Last year I wrote a post explaining why I felt the need to speak out. In it I talked about an encounter, with another preemie mom, that changed my life.
Here is a part of the original post...
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One day a friend of mine asked me to join her for lunch. She was meeting a first time client and thought that her and I would like to meet since the client's daughter was born early. My friend suggested that I bring my daughter (who was around 2 at the time) so the 2 kids could play together.
When we arrived I was surprised to see the client was without her daughter. As we started talking we realized that we had a lot in common. Both of our girls were born at 25 weeks, both of us had premature rupture of membranes and surprisingly, both of us delivered at the same hospital (this was odd because the hospital was 90 minutes away).
I opened my trap and started spouting off about how I was frustrated with some preemie moms who say that they wish their baby had not survived. I told her about how the neo at the first hospital told me that I had the right to not resuscitate our daughter. I proudly told her how I flipped out on the doc and that I was then transfered to the 2nd hospital (the same hospital she delivered at) and how they told me that their interest was in saving my baby, and my care came 2nd (I haven't gotten into this much but I will at a later date). I must have gone on for 15 minutes about saving preemies and how mine was such a miracle. I was so immersed in my own glory that it took me a minute to realize that "the client" was looking very angry. I shut my mouth long enough for her to collect her thoughts. She then said,
"I wish someone had given me the choice."
She went on to tell me that the doctors at the hospital told her that her "job" was to endure the time she needed to in order to save her baby (her water had broken and she was admitted). Even though she was telling them that she wasn't feeling good, they ignored her. (this also happened to me at the same hospital-a story I will tell another time). She asked them about having another baby if hers did not make it but they just kept on telling her that her baby would survive. She asked them about statistics but they just kept on telling her that she needed to relax (again-also happened to me at the same hospital).
The time finally came when her daughter needed to be born (due to infection-secondary to PROM). She lost a lot of blood during the c-section and ended up losing her uterus. Her daughter did survive but was massively affected by her early birth.
Again she said, "I wish they had given me the choice. I wouldn't have agreed to all of the meds to stop labor. My daughter suffers so much. I couldn't bring her here today because there is no room for her equipment at this restaurant. I can't even have more children."
My world changed that day. I was able to see "the other side".
**************
Since starting my blog I have met so many wonderful people. With each new relationship came an understanding that we have some things in common. With some it was prematurity or pediatric mental health issues. Some it was a love of scrabble or even long discussions on religion (or lack of).
But, with all of my old and new friends, I do not share ALL of the same beliefs as they do.
Did that stop me from getting to know them? No.
Did that stop me from being friends with them? No
Did it stop me from being able to understand how they feel differently than I do? No
To argue ones point or opinion is one thing. Being nasty to another human being is another thing.
If someone takes a different side on an issue, are they not worthy of being treated with respect?
If you only surround yourself with like-minded people, and treat all others with nastiness and hatred, you will never grow.
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210 comments:
1 – 200 of 210 Newer› Newest»I think that some of the participants/commenters of your own blog should heed your advice. Difference of opinion is not very welcome here. If someone has an opinion that is the exact opposite of Helen H or terriw/2 they are criticized and told that they will eventually come around to sharing the same opinion as they do.
It is disheartening to me when I come to read the posts and comments here and all I see is a woman (HH) with too much time on her hands out to inform people how wrong they are to think their children are anything less than miracles.
Now of course, HH will come back, as well as others, and say that they are only doing their part to get the word out about parental choice and parents being informed about the true outcomes of preemies. I expect it, completely. Know why? Because it's her MO. She never says to anyone, "I respect your point of view" or "I see where you're coming from."
Anon 12:44am,
I 100% agree with you, as do the many other preemie moms who have given up here and no longer comment.
I'm not really ready to throw in the towel because I want to reach the new preemie moms who come across this site.
I'd like to see a balanced discussion here, but when we have a difference of opinion, this is the sentiment:
"Most of the crop of bloggers kids are <3 with H&E [Holland & Eden] being the exception. Perhaps the future isnt something they want to look at daily. The common posters here all for the most part have older kids and it may not be something that bloggers with younger kids want to confront/see.
Most of the preemie blogs I read, the parents all think "they" are the exception. One day this will all be a memory and their kids wont be impacted. Hard to keep thinking that when helen and others show you those darn bothersome statistics.
I also agree with C&V when she said that alot of times we as parents, caregivers etc assign value, etc to our kids lives because it makes US feel better."
This is type of statement that is insulting and gets those with a difference of opinon steaming. Especially, when time and time again many of us have acknowledged that we are aware of the statistics; contrary to popular belief HERE, many of us heard these in the NICU. But because we know this and don't change our point of view, 'we assign value to our kids to make US feel better.' Come on!
To me, there is nothing worse someone can do than to insult your children. And when you hear them being referred to as 'damaged fetuses that nature meant to abort' it's hard not to get emotional. When it is pointed out that this was insulting, there is no apology, not admitting that this was probably quite insensitive and meant to get a rise out of parents, and this same commenter is praised time and time again by the author of this blog, you can't really expect everything is going to be peachy keen over here. At least not when you're insulting my children.
23wktwins wrote:
I'm not really ready to throw in the towel because I want to reach the new preemie moms who come across this site.
So you stalk other bloggers, trolling for traffic to your site, which only allows members who think like you ?
How sad and pathetic... did you ever think of getting a productive hobby like knitting, baking or gardening?
23wktwins wrote:
To me, there is nothing worse someone can do than to insult your children. And when you hear them being referred to as 'damaged fetuses that nature meant to abort' it's hard not to get emotional. When it is pointed out that this was insulting, there is no apology, not admitting that this was probably quite insensitive and meant to get a rise out of parents
It is extremely mentally ill to instantiate another persons generalized thoughts on the ethics of prematurity as being a statement about your own child, a child completely unknown to the author of the opinions. You really need help. I've never in the entire year this blog has been up read a single slanderous item about a *specific* child - not one time has someone written Stephanies' child is a damaged fetus. You apparently have deep seated doubts and fears about why your child was a preemie that Stacy cannot possibly be expected to help you with. If *I* don't view my child as a mistake or a failed abortion, I also don't care if anyone writes those things. Because I think in order for our society to be the BEST it can be not just what it is - we need to be blisteringly honest with ourselves and look at the ethics of EVERYTHING we do.
If what we are doing is truly ethical, then there is nothing to fear from all sides of the situation receiving glorious daylight. But if there are roach infested dark places, they typically DO avoid daylight and detection. If you REALLY loved your preemie, you'd be at the top of the class screaming for transparency.
To anon 9:08
"I've never in the entire year this blog has been up read a single slanderous item about a *specific* child - "
Looks to me like that's what you just did with this comment:
"If you REALLY loved your preemie, you'd be at the top of the class screaming for transparency."
I don't think Stephanie is mentally ill for being offended by the comment regarding damaged fetuses. I think it's perfectly normally for people to hear a comment and generalize or relate it to their own lives and experiences. Why do you think the word nigger has become so taboo? Because it insinuates a derragatory meaning. Whether a person is one of color or not, there have certainly been people on the planet who take great offense to the use of that word. Does that make the rest of them "mentally ill" as well? I have to argue that they're not even though I can't possibly know all of the people that are offended by that comment. So to say that Stephanie is because she finds a comment offensive is inane really.
Like the first anon poster said, let's all heed our own advice around here.
Yeah, well there is no point of trying to defend myself against that intelligent comment. What I can say is my blog is private, so I don't troll for traffic. What I can do is state my experiences, feelings, and beliefs and in an attempt a balanced discussion.
i agree with what you wrote at the end. it is a great goal to strive for...sometimes a rather lofty goal still a very good one. now to put the words and thoughts into action.
thank you sharing.
23wktwins wrote:
"I'm not really ready to throw in the towel because I want to reach the new preemie moms who come across this site."
Please do come by and tell your story. I am saying this without any insult. There should always be a balanced discussion. But, it will get heated. Each party has passion.
Isn't it that passion that drives you to write letters to authors who say something you do not like?
I will not go away.
I will not stop talking about the long term issues related to prematurity.
Each week I get letters from parents who are happy to have the research that we have posted here to take to their doctors.
I get letters thanking me for my honesty.
I get letters from parents of older preemies who thought they were alone because their child is struggling horribly.
I also get the letters from people who are praying for me because they THINK that I didn't want my daughter saved. (which couldn't be farther from the truth)
I wish that it all could be calmly discussed. Believe me... it would make my life a lot easier. But, I will not go away because of the turmoil, just as I would never want others to stop talking about their feelings and experience either.
I can assure you that these discussion would not be the same if we were all sitting around a table talking face to face. I've been a part of such discussions and everyone seems to be able to find a way to get their point across without the hatred.
TPE wrote: "I also get the letters from people who are praying for me because they THINK that I didn't want my daughter saved. (which couldn't be farther from the truth)"
I don't doubt, for one minute, that you are grateful that your daughter is alive. I believe that you love her with the same intensity that I love my son - a love born not only of simple maternal attachment but one forged in adversity, stretched to it's limits, and rebounding as the strongest of emotions.
BUT - The fear that blooms in the pit of my stomach as I read back through a years worth of posts and comments, is that I finally think that I have come to an understanding of the purpose of this blog. Many of your most frequent commentors, as well as yourself promote the opinion that saving >26 weekers is wrong. Not merely that information should be shared, and options should be explored, and parents and neos should work in partnership, but that NICU treatment at these gestations is WRONG. In the ideal world created here, Neo's would only offer treatment to these infants if parent's refused to listen to reason and best "medical advice" and insisted on treatment. Or even worse yet, treatment would not be offered at all, no matter the parents wishes, because the parents "have no idea what they are asking for". This is a scary idea to even contemplate. I think it is one of the main reasons that people are prone to strong, emotional comments here. They can't help but think of what would have happened to their children in that scenario.
Nancy wrote:
"I've never in the entire year this blog has been up read a single slanderous item about a *specific* child - "
Looks to me like that's what you just did with this comment:
"If you REALLY loved your preemie, you'd be at the top of the class screaming for transparency."
I don't think Stephanie is mentally ill for being offended by the comment regarding damaged fetuses
Holy cow Nancy.... can you not SEE the irony of your post ?? Again, personalizing a general comment. The YOU in the "if you really loved" comment is clearly, obviously and painfully the editorial "you". This was the exact point made ... if an individual is comfortable with their beliefs and decisions, the fact that someone ELSE feels they are unethical or immoral, should have absolutely, positively no impact/effect. If you are losing sleep, or peace of mind, over the opinions stated on the internet, it could be clear evidence that you aren't comfortable with your ethics and decisions - if you cannot have an intellectual debate without putting your own (and this once again to be clear since there seems to be some misunderstanding about that is the editorial your own) child in the argument. Just because many people who participate in Stacy's blog have NICU survivors, doesn't mean they personalize every ethical debate. They don't frame it around their one off experience, they look to the societal and cultural impact of technology without conscience.
Future of hope said:
In the ideal world created here, Neo's would only offer treatment to these infants if parent's refused to listen to reason and best "medical advice" and insisted on treatment. Or even worse yet, treatment would not be offered at all, no matter the parents wishes, because the parents "have no idea what they are asking for".
Unfortunately, because of folks who cannot stand the idea that parents would compassionately offer palliative care to their child, there seems to be the need to bully and harass individuals who have the bravery to be a voice for allowing there to be options other than the aggressive NICU care model. Over many, many years of talking with thousands of preemie parents, there have only been a few dozen parents who wanted their preemie "saved" and had that request flatly refused on ethical grounds, on the other hand, I know hundreds and hundreds who were at best deeply ambivilent about the anguishingly painful treatment their child was forced to endure in the name of "saving" them, to parents who took their refusal all the way to hospital ethics boards to no avail ... We do NOT have a level playing field. Until both sides can respect each others point of view (which these posts clearly illustrates we do not, since some responders actually believe that the regular posters here are advocating for the refusal of care to micropreemies, which they are not, and never have - regardless of what THEY PERSONALLY would do with their own fetal-infant they all would fight for your right to do something different.
We have sadly reached a point in our out of control experiment that women are being charged with murder for refusing to go to a hospital when laboring at 23 weeks. This unchecked medical juggernaut has removed parental rights at their most basic level. A mother can no longer miscarry in peace. It's a devastating crisis in America ... and the fact that there are brave voices like Stacy's is a glimmer of hope. You worry about your rights being infringed upon, yet you are totally blind to the fact that everyday in America, there are families whose rights are summarily stripped away. They cannot offer protection and comfort to their own children. That's not a potential situation.. that is a fact occurring daily.
"Holy cow Nancy.... can you not SEE the irony of your post ?? Again, personalizing a general comment. The YOU in the "if you really loved" comment is clearly, obviously and painfully the editorial "you". "
I read your comment to be in direct response to Stephanie.
"So you stalk other bloggers, trolling for traffic to your site, which only allows members who think like you ?
How sad and pathetic... did you ever think of getting a productive hobby like knitting, baking or gardening?"
You don't find this comment to be argumentative or insulting?
A lot is lost in the typed word versus the spoken word. And I have experienced that when people are speaking of the general you, it is put in quotation marks, or they say that it is just that, the general you.
I am not going to get into a back and forth discussion with you regarding what "you" it was that you meant in your comment.
"if an individual is comfortable with their beliefs and decisions, the fact that someone ELSE feels they are unethical or immoral, should have absolutely, positively no impact/effect. "
I disagree with this statement. While I am comfortable with the ethical decisions that I have made in my life, I think it is perfectly acceptable to have an emotional response to a decision someone has made that has been different from mine. For example, I support a woman's choice to have an abortion. When I hear someone discussing their reasons as to why they feel it is wrong, I naturally have a response to that. That same logic follows should someone have the belief that a 25 weeker should not be resuscitated. Obviously I have strong opinions, emotions, regarding that as my daughter is a 25 weeker. If in that conversation a person says they would never save a 25 weeker, how can I not have a reaction to that? I certainly can't imagine listening to something that I feel strongly about and sitting there stoicly, with no reaction what so ever. I have to assume that you feel the same way or you wouldn't be engaging in the discussions that take place here?
So in the same way that you found irony in my comments, I find it in yours. But again, so much is lost in the typed word that we could probably go round and round about this for days and it would lead us right back to where we are now.
I think there are a lot of good points being raised, and I don't think we should simply stop discussing these issues. Aka I'm not, and have never ave advocated for Stacy going away.
What I do think is we should speak with respect about all human life, and yes, even tiny micropreemies. Yes, I did personalize the 'damaged fetuses' remark. I have held a dead baby who was not viable to sustain life, and no she did not look like a typical baby. But, it is an insult to refer to that child a 'damaged fetus,' and if it makes me mentally ill to stand up against that language for my children, my neice who passed, and for all other micropreemies, then so be it. It was hurtful and disrespectful, and that's the way I feel about it. You can disagree, and you can use the language you chose to describe human life, but that doesn't mean everyone will sit by and not address how degrading it is. Like the point Nancy mentioned, there are still ignorant people who use the "N" word, I condemn it when I hear it.
I think talking about the long term issues associated with prematurity is vital. Thankfully many of us researched on our own and/or were informed in the NICU; unfortunately many didn't/weren't. The discussions are valuable because there are parents who would opt not to care for a child with special needs, clearly micropreemies will have some varying degree of special needs, parents msut be prepared for this.
What I have difficulty with is when parents state that they feel their children are doing well and have a good quality of life, this is dismissed because the child is not old enough. If a parent of an older micropreemie chimes in, they are usually ignored, and probably not even believed. Yes there are statistics, but not everyone's life fits nicely into them. We have to understand that even with disabilities, many parents, not just micropreemie parents, believe in the value of their child's life. This is where I wish the tone would gravitate to. A place where human life is valued, in all its imperfections.
This is not to dimiss the suffering that occurs. I wholeheartedly disagree with Drs who continued treatment in cases where the child was doing so poorly AND the parents wanted the treatment to end. I have said soooo many times here that I myself was ready to end treatment for my son. I believe in comfort care!!!!!
I don't believe in disrespecting the disabled. I don't believe because a person has a disability this means their life is not worth living. That's *my* opinion and others are entitled to theirs. There are people who are satisfied with their lives with their micropreemies, and this is the message that I think is often ignored here. You can tell me 100% of babies born under 26 weeks will have some sort of diability. This does not even begin to tell me what life is like for that family or that child. This is why sharing personal stories and talking about improving NICU care should continue.
You can make assumptions about my position on issues all you want. But I do not disagree with informed parental consent, providing comfort care to the critically ill infant with PARENTAL consent, improving NICUs and follow-up care, creating NICUs that are ALL family-centered, etc etc.
What I don't do is demean human life, even be it a disabled life, nor do I pretend to know the outcomes of all children born before 26 weeks.
future of hope wrote, "Many of your most frequent commentors, as well as yourself promote the opinion that saving >26 weekers is wrong."
Dear future of hope,
I have never said that I personally feel that saving all >26 weekers is wrong. What I have said is that I would not have saved my son if he was born before 23/24 weeks. (this after giving birth to a preemie at 25.5 weeks)
Does this mean that I fault other parents for their choice? Absolutely NOT!
I am going to say this again... *I* chose to have my daughter resuscitated when she was born at 25.5 weeks. I would do it again.
But, let me make myself perfectly clear... parents should be the ones choosing, not doctors. I am saddened when I hear from parents who did not have that choice. In either direction.
Nancy wrote:
That same logic follows should someone have the belief that a 25 weeker should not be resuscitated. Obviously I have strong opinions, emotions, regarding that as my daughter is a 25 weeker. If in that conversation a person says they would never save a 25 weeker, how can I not have a reaction to that? I certainly can't imagine listening to something that I feel strongly about and sitting there stoicly, with no reaction what so ever. I have to assume that you feel the same way or you wouldn't be engaging in the discussions that take place here?
Actually, no I don't have any emotional reaction to a person following their own beliefs, ideas or faith ... and I do not feel one bit threatened by them. I have no problem with an individual doing whatever their conscience dictates, so long as that is a choice for them, and not them institutionalizing their beliefs on me. Whether they would choose aggressive care for their fetal-infant or their dementia-rattled Granny is of no concern to me. I support their rights (probably a bit more if their choices are against mine, or in the minority ... because I feel they probably need support more than folks going with whatever seems to be the popular crowd of the moment.
I do not internalize, instantiate or emotionalize an ethical debate. The point *isn't* what would *I* do, but rather, what is the best environment for everyone. Generally that will end up being something that allows folks to follow their conscience within a framework. We do not have a framework, we have a drunkards path of historical actions taken many times in an ethical vacuum. Simply because we *can* do something, doesn't mean that it is correct to do it in every case. I hope we can get to a place where palliative care and aggressive care are peer choices offered to parents.
Anonymous 1:01 wrote:
I hope we can get to a place where palliative care and aggressive care are peer choices offered to parents.
I would potentially agree with this statement if there was a clear cut understanding of at what exact gestational age a baby could survive without life support. At almost 22 weeks, my neice lived only for several minutes. At 25+ weeks babies have come up from delivery on a nasal cannula.
Here in lies my ethical dilema, which I don't pretend to have the answer to.
To 23 week twins' mommy:
Since I am the one who once (in another blog, I believe) quite correctly used the words "damaged" and "fetus" in the same sentence to refer to *my son,* (who was, according to his doctors, damaged as a fetus in utero by the organism Listeria), let me assure you that I have never referred to your children as "fetuses" or "damaged."
I will state for the record that your twins are not now, and never have been, "fetuses" or "damaged."
And now I hope you can give up your fixation on "damaged fetuses" and stop repeating these words, over and over again, totally out of context.
You have chosen to feel personally insulted by a statement of medical fact concerning *my child* and others who were damaged in utero as he was.
Helen Harrison
I would potentially agree with this statement if there was a clear cut understanding of at what exact gestational age a baby could survive without life support. At almost 22 weeks, my neice lived only for several minutes. At 25+ weeks babies have come up from delivery on a nasal cannula.
Why would it be of any concern to you how old the infant in question was - unless it was your own family and you were making the decision for yourself. That would be the whole point of the options being "peer". It's not up to me or you or anyone but the individuals giving birth. If those individuals make the decision that they do not want aggressive measures taken, that should be the end of the discussion. Whether the birth in question is 22 weeks or 25 weeks.
It's not whether any one here "thinks" the fetal-infant is viable, it's about whether the parents want that kind of life for their child and their family. If the child was *truly* viable without life support, then they would by extension survive, regardless of what care they are given.
Thank you Helen for explaining yourself. You did make that remark on this blog and it certainly was not clear when you originally said it that it was about your son. Thank you for poining out that you were not referring to micropreemies as a whole.
To 23 weeks'twins mommy who said:
"Thank you Helen for explaining yourself. You did make that remark on this blog and it certainly was not clear when you originally said it that it was about your son. Thank you for poining out that you were not referring to micropreemies as a whole."
***
I made the original remark on Neonatal Doc's blog, *clearly* in reference to my own child.
My remark was taken up by a few angry parents and brought over to this blog where it was repeatedly misquoted and used as a term of harrassment. After a while, I saw it was pointless to try to respond.
However, I have always made it clear, whenever I was initiating any such remarks, that the terminology referred to *my child* and others like him who were, in fact, damaged in utero by infection.
It should be noted that the majority of infants born extremely prematurely are similarly affected in utero by infection. That is why, physcians think, they are born very prematurely in the first place.
Helen Harrison
23wktwinsmommy
I wrote the quote you metioned and I stand by it 100%. What exactly is insulting? I said nothing about YOUR specific children. Having been in this marathon a little longer I can speak from MY experience. Seriously, for one second, take an honest objective look at the micros you see. Liz's group makes my point better than I ever could.
There are good outcomes but to say they are the norm is at best misleading and at worst an outright lie from someone who knows better.
But the point behind this blog post by Stacy was that just because you disagree w/someone doesnt give you license to be mean or intentionaly hurtful, as has been the case by you and others the last few days. Or maybe I am imagining that this is where this post by Stacy came from...
Who have I been mean to the past few days?
To answer your question, the part that is insulting is "as parents, caregivers etc assign value, etc to our kids lives because it makes US feel better."
I think *most* parents, and since you brought up micropreemie moms who blog, I'll say *most* of them, do not assign value to their children, but rather the value of their children comes from the fact that *most* believe that ALL children have value. We don't do it because it makes us feel better, we value their lives because their lives are valuable, with or without US as parents.
*I keep deleting my douplicate comments, because for some reason my mouse is sticking.*
I've been baffled by the "damaged fetus" thing for ages, because although I thought I'd read every comment on every post, I couldn't remember anyone ever saying that. I wasn't sure if it was my faulty memory, something I missed, or words that got erroneously attributed to someone. It felt like when everyone kept teasing Al Gore for saying he invented the internet, when that wasn't quite what he said.
Now I get it. I never kept up with Neonatal Doc's blog, so that must be how I missed the origins of this.
On a lighter note (and please forgive me for interjecting a little lightheartedness into this conversation), I got the giggles when I read HH's statement that the 23 week twins have never been fetuses.
If I remember my 9th grade biology correctly, they were both fetuses once. And embryos. And zygotes. And two fertilized eggs. And twinkles in their mother's eye.
But I know what you meant. :-)
Please, please, everyone, I'm not trying to dismiss anyone's legitimate grievances, or tease anyone, or fail to take this seriously. It's just that in the midst of this important but difficult conversation, that struck me as really funny. But then again, I'm the kind of person who gets struck with the urge to giggle in church and at funerals. ;-)
It's ok, I thought that was kind of funny that she wrote that too, but I got her point. At least we're not still debating whether or not they get to become babies, infants, children when they are physically born. I know some of us differ on this point, but in this case we can agree to disagree.
Sometimes when it seems like I'm really mad and personalizing stuff here, I laugh about it with family and friends. Sometimes I am annoyed, and this is when Edwin says, "I don't want to hear anything about preemie stuff."
You have to laugh about stuff sometimes, because in the grand scheme of things, this blogging hobby of mine, is truly that, a hobby. Sorry gardening, baking and knitting are for old people. JUST KIDDING!!!!! And although I believe in advocating, at the end of the day, what really matters to me are *my* kids.
So I respect Stacy, and even though I don't know what I did wrong these past few days, (I have been mean in the past I don't deny that), I apologize for purposely hurting anyone or being mean. And that is sincere.
I'm finding it very hard to phrase what I want to say, so I hope I don't offend anyone too much.
Since the conversation is heading towards ethics: I live in what is pretty much a third world country. The idea that millions of dollars are spent on a regular basis in an attempt to save increasingly unviable babies is unconscienable to me, when there is so much poverty, suffering, and lack of healthcare in your own country! Never mind the third world! There are people in your own country who cannot access basic quality healthcare, education or housing!
I'm afraid that your government has really got its priorities completely backwards. Ridiculous anti-choice laws like "baby doe" should be the last thing on the agenda! The fact that the government and medical establishment can force you to save a baby that is extremely likely to be disabled without making any provision for their long term medical, financial, and educational needs is utterly cruel and inhumane.
I don't want to get into the issue of what age resucitation should take place at etc. I have personal opinions which I'm sure most don't share. But I feel strongly that, as a nation, you need to seriously re-examine your priorities.
Dee,
What a wonderful post. You're thoughts are incredibly insightful and accurate. We have increasingly become a save-every-sperm society with zero interest in saving the lives those sperm become. Parents are released from NICU's everyday without any meaningful support beyond an pathetic and totally inadequate "birth to three" programs that cannot begin to cope with the flood of infants requiring services, eventually dropping these kids on the doorsteps of schools that are completely underfunded and incapable of accepting the tsunami of SpEd kids they are being deluged with.
Everyone has an emotional argument for the first "15 minutes" of the game, but no one wants to deal with the uneducatable 3rd grader whose parents have declared bankruptcy and divorce because of the strain of trying to provide a decent life for their NICU survivor. Those are the ones who continue to struggle, some just give up and throw themselves and their kids off a bridge and the country reads the tragedy and looks down their noses with a tsk..tsk disapproval. Where is our societal concern before that mother approched the bridge in the first place.
sheila
Actually, Helen, I found the place where you made the damaged fetus comment on Neonatal Doc's blog. Here is a direct quote from you:
"Helen Harrison said...
I, for one, don't feel guilty about my son's premature birth. I know I did everything within my power to give him the best possible start in life, and I did so from the minute my husband and I began to think of having children.
I do, however, question the wisdom and culpability of those who think they can turn a damaged fetus, that nature "intended" to be miscarried, into a healthy, normal child.
10:44 PM "
In the beginning of your statement you are referring to your son. But the second paragraph is quite clearly calling into question the motives of others and calling their babies "damaged fetuses."
That doesn't really sound like somebody *only* talking about their infant, does it? Other posters, your thoughts?
And for clarity, in case anyone believes I am misquoting Helen. Here is the link to that comments section.
http://neonataldoc.blogspot.com/2007/03/guilt.html
Anon wrote:
I do, however, question the wisdom and culpability of those who think they can turn a damaged fetus, that nature "intended" to be miscarried, into a healthy, normal child.
10:44 PM "
In the beginning of your statement you are referring to your son. But the second paragraph is quite clearly calling into question the motives of others and calling their babies "damaged fetuses."
Anon 4:25 -
Apparently, you want to read insults into Helen's generic statement. She didn't call anyone elses child a damaged fetus. Her statement read to me as simply "you cannot make a silk purse from a sow's ear". She didn't tell anyone their fetus was damaged, she merely said, if a child sustained in-utero damage it is naive and poorly informed to presume that they will be completely healthy and neurologically intact. There seems to be little dispute in the scientific community that cytokines are neurotoxins and that at certain levels brain damage cannot be successfully accomodated by the developing child. That completely sets aside any arguments about additional damage they might encounter as a result of their NICU treatment.
I didn't read any accusations in Helen's post. I did however read some in yours.
Anon 4:42:
Of course I would expect your analysis of the comment to come down on the side of Helen. I feel I can safely say that others will likely have a different viewpoint.
By the way, your viewpoint is not automatically right and mine is wrong. They are different. I don't see my comment as accusatory. I am quoting Helen's own words, giving my interpretation of her comment and asking for others' opinions.
I read her comments quite differently than you did. I imagine others will as well.
Who said my opinion was right ? You asked (rather baitingly) if everyone agreed with your assessment of what Helen wrote. Then you get your panties in a bunch that not everyone agrees with you? Shame, shame, it's ok with you if everyone who disagrees with Helen posts here to their hearts content, but those who disagree with you should somehow be silent ?
Curious
To the various "anons":
You have quoted me correctly and I thank you for that. I stand by what I said.
Infants like my son are, in fact, damaged before they are born by infection. That is why very preterm labor is thought to occur in most cases. "Nature" does not "intend" these pregnancies to proceed to term.
Helen Harrison
To "Curious":
First, the "panties in a bunch" comment is not only an inaccurate assessment of my feelings but an insulting one. Perhaps we could refrain from such derogatory comments. You are more than welcome to your opinion. I am simply saying I have a right to mine. Particularly when I am posting word for word what Helen wrote. She consistently asks that we don't misquote her, so I took great pains not to do so.
As for baiting, I am most certainly not the only one here who does that. I have come across many comments from those who share your viewpoint that could be just as easily labeled as "baiting."
Helen, do you have research to back up the assertion that infection is involved in "most" cases of preterm labor. I am very aware it is prevalent, but the term most would suggest greater than 50%.
In my particular case, it was early onset pre-e. I think "damaged fetus" is pretty much the last term I would apply to my baby in that case. Or in your mind does that term still apply?
OK, here goes. I have to say first off that I don't really read many preemie blogs (other than this one, and my own). I think we all have to agree that in far too many cases (note I did not say ALL), parents do not seem to be getting balanced, accurate information about outcomes and prematurity. With my own daughter, all we were really told was her 90+% chance of survival (when I was admitted at 30 wks). Nothing was mentioned about problems at school age, sensory issues, etc. These are common problems that many preemies and their families contend with every day. They wouldn't have impacted her management, but it would have been nice to be more prepared for what we were really facing.
I have my MD, and was planning for a career in peds when my daughter was born at 31 weeks. I saw first hand how much micro preemies went through in the NICU, but I still had very little concept of what would happen after they left the NICU.
I remember being shown a picture of micro preemie triplets at birth, and then one of them around 5 years old. Everyone gushed about how they were doing so well. Later, I met this family when the kid who was "doing the best out of all of them" was diagnosed with epilepsy. The other two children had severe learning disabilities.
I agree that we all need to respect each other's opinions, and decisions. Hindsight can be 20/20, but it can also be clouded by a lot of emotional baggage. No two cases are the same.
I would really like to see more information getting out to parents. It doesn't really matter what decision they make. I'm looking for more informed decisions - one way or another.
To anon 5:17 who asked
"Helen, do you have research to back up the assertion that infection is involved in "most" cases of preterm labor. I am very aware it is prevalent, but the term most would suggest greater than 50%."
It appears to be greater than 50% for infants born before 30 weeks. Here is what Drs. Goldenberg and Andrews wrote in their review article "Intrauterine Infection and Why Preterm Prevention Programs Have Failed" _American Journal of Public Health_1996;86:781-3
"As many as 80% of women delivering prior to 30 weeks have histologic chorioamnionitis [aka: infection]. Recent studies indicate that if the membranes and the amniotic fluid are cultured carefully in women delivering spontaneously at less than 30 weeks, bacteria will be found in 60 to 80%."
"Evidence is also accumulating that the intrauterine infection that precipitates preterm labor after 20 weeks' gestation is present at least several weeks
earlier. As an example, in a report by Cassell et al. amniotic fluid colonization with Ureaplasma urealyticm was idenfied at 16 weeks, but was not followed by spontaneous preterm birth until 24 weeks. Several larger studies have confirmed that, when organisms are present in the amniotic fluid prior to 20 weeks, the pregnancy generally terminates spontaneously within the next 4 to 8 weeks. Recently, elevated midtrimester amniotic fluid pro-inflammatroy cytokines, present in asymptomatic women at 16 to 18 weeks' gestation, were found to be predictors of subsequent preterm delivery."
Of course, it isn't as straightforward as all this would indicate, and attempts to stop preterm labor with antibiotics have been disappointing.
Also there are indications that some pregnancies afflicted with the various bacteria associated with preterm labor may, in some cases, make it to term.
But, yes, infection is associated with (and probably directly causes) 60 - 80% of preterm births
before 30 weeks.
Helen Harrison
Anon,
Thanks for going out of your way to find the direct quote. It was the one I was referencing, and I was mistaken when I said I thought it was written here.
I don't want to beat the issue to death, so just know I agree with you, and I'll leave it at that.
Sometimes I am my most defensive because I have not been listened to (on a given subject) perhaps over a long period of time. My irritation, and then anger, about not being heard finally bursts forth. I have been dissed and I finally defend myself, and it is "defensive" and it is perfectly understandable.
And I also think it is understandable to defend one's child. I myself was fully entrenched in defending my child till I had more than one child. Then, the day came when one of my children bullied a sibling. On that day, I stopped unreservedly defending my child. I was forced to defend the underdog child and NOT defend the bully child . . . and so no longer automatically defended a child of mine. This may not make sense . . . until you have to "choose"--even my husband didn't get it at the time. OR, if you never get to this point, you WILL get to the point of hearing that your child did something awful in school . . . and you will let go of defending your child.
This doesn't mean that you don't value your child. Nor that you value an intact child MORE than a child with disabilities, whether that child is your child or another's.
Every life is sacred. My disabled son's life is sacred AND he will have some degree of suffering in a culture where he doesn't fit in because he is different/disabled.
That makes his life sacred AND sad. And it makes me, his mom, regretful.
I try to accept what-is. I try to keep my regrets and grief reined-in. Parents starting out with a preemie would be well-served if they could know early on (or better yet, ahead of time) about mine and Helen's and Stacy's regrets and grief.
So that is what The Preemie Experiment blog is about, I think.
And about respect.
I respect where everyone is coming from--
Be where you are.
Is that far?
It's as far as you are.
Chris and Vic
Very well said, Chris and Vic, as always your words are insightful and uplifting. This blog is a wonderful collaboration of everyone’s journey on the road less traveled. If only we could recognize that each person’s perception of their travels is correct at the time they are going through them. I have great respect for everyone who shares their experiences and greater respect for those who listen because much is to be learned from each other.
-Tammy-
I believe we should all be careful when we say that nature intended something to happen, as in pre-term labor.
Does this mean that everyone who has cancer should just let nature take its course? That a person with epilepsy should suffer seizures? That each infection should be allowed to fester?
Obviously, there aren't many of us who think that way--that we shouldn't allow intervention in natural events.
Right or wrong, we, as humans, intervene against nature every day.
Parents should be well informed. I happen to know at least one neonatologist who has changed how he practices, if even just a small amount, by listening to people such as Stacy and Helen. Yet, he also hears what others who disagree with some of Helen's assertions have to say. It is a balancing act. We would all have better balance if the snark, the anger, and the insults against all (parents, doctors, administrators, were reduced or completely removed.
--SB
To SB:
I put the words "nature" and "intended" in quotation marks because I do not really believe that nature has an intent in the usual way we think of human "intent."
I doubt, for example, that "gravity" "intends" objects that we drop to fall on the ground. However, that is what usually happens.
We interfere with "nature" (or try to ignore "gravity") at our peril, but also, sometimes, to our great profit. Still, there are almost always unintended consequences to consider.
For example, we use antibiotics to combat infections. However, our widespread use of antibiotics has led to microbal mutations and extremely dangerous antibiotic resistant infections which imperil everyone(btw, many of these infections incubate in intensive care units, especially in neonatal intensive care units.)
I'm all in favor of fooling "mother nature" if we can get away with it. I just have to question whether, in the case of trying to stop preterm labor, or in trying to treat all extremely premature babies aggressively, what we are really "getting away" with here.
For parents who think mere survival is the goal, then neonatology is doing a great job. Other parents may look at the short- and long-term suffering involved and see it differently.
I think all parents should be given full information about what neonatal medicine currently can and cannot do for these babies along with options for comfort care.
Then the parents should be allowed to decide which course is most advisable for their child and family.
This is currently not happening, with only about 1/3 of neonatologists allowing any parental input into resuscitation and treatment decisions.
Helen Harrison
Helen, my caution about using nature and natural as words in an argument with anyone with scientific training can be an immediate turn-off button in regards to listening. Science can be about elucidating the process of nature as much as learning how to tweak it for our benefit (real or supposed). The entire role of medicine is to thwart nature, keeping it from claiming lives unnecessarily. Saying that something is what nature intended is an instant insult to a medical professional's chosen vocation.
To SB:
I come from a family of scientists and physicians and understand your point, but not all scientific or medical interventions are wise or "successful."
My parents worked in the Manhattan Project...need I say more?
Science also tells us that the most successful species are those that maximize their reproductive capacities and pass their genes into future generations. Human females have relatively few reproductive opportunities compared with other species.
When something goes wrong with a given pregnancy, the human female's chances of reproducing again successfully are usually enhanced by having the pregnancy end to let her try again.
When medicine intervenes in this process, it may be limiting the woman's future reproductive capacity and limiting her ability to care properly for the children she may already have.
The question to ask here: "Are such interventions a wise use of medicine?"
Each of us will have different answers, including physicians.
Helen Harrison
SB wrote:
Right or wrong, we, as humans, intervene against nature every day.
Yes, we are opportunists--we intervene against nature when it seems to be in our best interests.
And we "follow" nature's course when it suits our purposes.
There used to be a commercial, years ago, where a gauzy-gowned Mother Nature sternly said "It's not NICE to fool Mother Nature!!!" (thunderclaps heard, bolts of lightning flashing . . .) I think we all KNOW this--that if we fool Mother Nature, that is, thwart the natural laws, it could backfire on us.
And neonatology has thwarted a cardinal rule of nature--the survival of the fittest.
And many of us condone or profit. (That is, it suits our purposes to have those intensive care units set up and running.) And some of us would like to draw the line--only mess with Mother Nature up to a point . . . because here is an example of the fallout: prematurity and its long-term consequences.
Chris and Vic
Also to SB who said:
"Saying that something is what nature intended is an instant insult to a medical professional's chosen vocation."
****
At a recent meeting of perinatal physicians, a poll was taken, I am told, in which the assembled docs were asked if they would have their own 23 week gestation infants treated aggressively (as they often insist for other people's children).
89% of these neonatologists/perinatologists said they would *not* want their own infants treated at that gestational age. In other words, these physicians would opt (to use your words) to "claim lives
unnecessarily."
Have these neonatologists thereby insulted their own chosen vocation?
Helen Harrison
I still assert that using the terms natural, nature, etc. is not hot to win the hearts and minds of the medical machine. Maybe, you could get parents to join with you with those terms just not doctors or scientists. Natural and nature intended cause a certain logic stream that goes something like this: If we follow nature or what nature intended, we would have maternal death rates approaching that of the non-industrialized world. Don't we value human life more than that?
Lastly, Chris and Vic, I have only this to say, since humans harnessed fire, learned to farm, and eased the transport of water, we were no longer governed by evolution.
I could say more, but it isn't relevant to this conversation.
Oops, that should read "not how" instead of "not hot". Those typos!
At a recent meeting of perinatal physicians, a poll was taken, I am told, in which the assembled docs were asked if they would have their own 23 week gestation infants treated aggressively (as they often insist for other people's children).
89% of these neonatologists/perinatologists said they would *not* want their own infants treated at that gestational age. In other words, these physicians would opt (to use your words) to "claim lives
unnecessarily."
Have these neonatologists thereby insulted their own chosen vocation?
Oh, that's absurd to ask that last question. You assert that that parents should have a choice. Those people were expressing which choice they would take. As many people know and have experienced, when on the front line decisions change.
My words, which I feel you have misinterpreted or are misrepresenting, were meant to help you reach doctors, which is who need changing, right?
What good are you doing by asking such a question? I agree with you. Why so combative?
To SB:
The problem using metaphors like "nature intended" with scientists is that they raise questions of "agency" and "causation" and the "anthropormophizing" of nature. I understand that.
But using the expression "nature intended" has nothing to do with insulting a profession, as you stated.
I am also not sure why you think physicians who say they would not want treatment for their 23-weekers (or under 26-weekers, for that matter) don't act on their opinions. In my experience, they often do, if they have the chance.
Helen Harrison
Because I have known a few who changed their minds, that's why.
To SB:
The ones I know (with two exceptions) chose otherwise.
Helen Harrison
To sb who said "since humans harnessed fire, learned to farm, and eased the transport of water, we were no longer governed by evolution."
No longer governed by evolution? Where do you think our brains came from that allowed us to pursue farming, etc.?
We also, I would argue, evolved to have common sense and compassion to rein in the more extravagent and self-destructive follies of our intellects.
Helen Harrison
I think for me the problem is not being disrespectful of other people's opinions (unless that person's opinion insults any of my children, or children in a similar situation, living or dead, by referring to them as a fetuses nature meant to abort) but that one person's opinion takes up so much of the comments. When you have, say, 49 comments, and 16, or roughly 1/3 of the comments are from the same person, and that situation occurs over and over again, it really does feel like one person's opinion is being shoved down my throat, even if that was not the intent. It colors the reactions of the other commentors, it drives some away, it makes others uncomfortable stating their opinion, and others become defensive. And then you tell us we are not tolerant of other's opinions, which makes it even harder to stand up.
I have heard her opinion, and I am tolerant up until the point that it is covering up opinions of other people I would like to hear from. Yet these commentors, like 23-week twin mom of E&S, spend most of their posts defending their beliefs to Helen. To those posters, I want to say, I have heard from Helen, now I want to hear from you, and I am listening. Don't base your posts around her reactions.
sce
To SCE:
Stop putting out ridiculous distortions of my views, and I'll stop having to correct them.
Helen Harrison
"Stop putting out ridiculous distortions of my views, and I'll stop having to correct them."
It's not always a distortion of your views. When we are asked for an opinion and we offer one up, you are quite quick to offer "statistics" and "research" to discount *our* opinions. When really, no matter what the evidence, it can't always change an opinion. An opinion is often not based merely on statistical fact.
To Nancy:
I realize that some of the opinions expressed here are not evidence-based, and I recognize that my citing of research makes little difference to people who staunchly hold opinions that may be contradicted by fact.
But others find the research, facts, and evidence validating and useful.
And, I must point out both to you and to "sce":
my posting on this blog in no way precludes or prevents any of the rest of you from posting with your opinions, evidence-based, or otherwise.
Helen Harrison
But Helen the point I think they are trying to make is when another poster post here, you bust out your stastistic quoting cape and in my opinion have a tendency to disregard anyones opinions or feelings if they are not in agreeance with you...why is that? are you the only one who can have a said opinion? i do agree that the parents should have the final say in the end, i'm not sure if there has been any debate by anyone that the parent should be able to decide if they want only comfort care given..but when these discussions come up you want to take it to the next level of quoting studies you have found, or making someone who chose to have their child who was a 23, 24, 25, 26 wkr feel that they put their child through a lot of unwaranted pain or "torture" as some have said, or that they are in for a burdened life..maybe this is your life, maybe this is how you view it..
sce said:
I have heard her opinion, and I am tolerant up until the point that it is covering up opinions of other people I would like to hear from. Yet these commentors, like 23-week twin mom of E&S, spend most of their posts defending their beliefs to Helen. To those posters, I want to say, I have heard from Helen, now I want to hear from you, and I am listening. Don't base your posts around her reactions.
Here's just a glimpse of some of my opinions related to the positions I take here.
-I believe that all human life, in and of itself, has value.
-I believe people with disabilities have lives that are valuable and worthwhile.
-I do not believe that parents assign value to their children to make themselves feel better. I don't believe you assign value to children, I believe they simply are valuable, and if you can't see that as a parent, then that's your issue.
-I am thankful that we are aware that S&E's life will always be affected, in some way, by their prematurity. I will use any and all pertinent information to advocate for them in the medical arena and school settings.
-When I made the committment to become a parent, I accepted the fact that my children would always come first. If I can't pursue something I once wanted, I will not resent my kids for it.
-If Edwin, Sr. and I don't last, I won't blame it on S&E's medical or special needs. It'll never be their fault. If we can't make it as a team, it's our issues, not theirs.
-No matter what the future holds, I will never regret our decision to resuscitate and continue care.
-I think parents should be well informed that their lives will be significantly altered by parenting a premature child. They should be told everything from CP, to sensory issues, to feeding issues, to mental health issues, to learning issues, etc.
-I also think it's worthwhile to consider, that although micropreemies are at a significant increased risk of long term issues, nothing in life is definite, and this includes the long term outcomes of any and all children.
-If I could somehow go back in time and have S&E at term I would in an instant. I picture this sometimes. They'd have the same amazing personalities, but with healthier lungs and milestones that came a little easier. They would have the same souls, just their physical would change. Even though I sometimes allow myself to go there in my dreams, I have 100% accepted the fact that this is not possible. Does it suck sometimes? Hell yes. Will any statistic change my opinion on the value of my children's lives? Hell no.
I've talked at length about how NICUs should operate, family-centered and family-empowered. I've talked about my opinion that I agree with comfort care in situations where further efforts would be futile and the parents agree; I even think if the efforts would be truly futile and the parents can't see this because of their love for their child, the ethics board must step in. And I've made it quite clear that I believe that fetuses become babies, infants, and/or children when they born, whether that be born alive or not.
That's just a little about me in a nutshell.
Helen Harrison replied...
to "kellar's mommy" who said: "you bust out your stastistic quoting cape and in my opinion have a tendency to disregard anyones opinions or feelings if they are not in agreeance with you...why is that? are you the only one who can have a said opinion? "
***
Again, my posting here doesn't preclude anyone else from posting with their opinions.
If you don't like what I have to say -- it's really simple -- just don't read my posts.
Since Stacy's blog no longer offers an option for automatically putting one's name at the top of the post, I'll try to be sure to put my name at the head of each post I write. When you see it, just don't read it. No one is forcing you.
Helen Harrison
Well said Steph!
If you don't like what I have to say -- it's really simple -- just don't read my posts.
did i strike a nerve? you say how you feel and i just simply said how i felt, as several others have
From Helen Harrison to "kellars mommy" who asked:
"did i strike a nerve?"
***
More like a gag reflex.
Quote from the original post:
"To argue ones point or opinion is one thing. Being nasty to another human being is another thing."
"From Helen Harrison to "kellars mommy" who asked:
"did i strike a nerve?"
***
More like a gag reflex."
Does this not constitute being nasty to another person? And will this be tolerated??
Helen:
I think what many posters are trying to say is that most of your posts on this subject are flying in the face of the topic itself. Respecting difference of opinion. Opinion is not based solely on facts. Sure, the opinions I form are partially based on facts, but they are also based on experiences, belief systems, etc.
A post about difference of opinion is not really the place to continue to post study after study. If it were, the title of the post might be "Please cite journal articles."
You can still post with just your name. Instead of "Anonymous," click on "Name/URL" and it'll expand to give you a place to type your name.
Unfortunately, although the url should be optional, at the moment, it isn't. I've searched the blogger knowledge base, and no one seems to have noticed this bug, yet, so I reported it. So, you can just use a bogus url. (The url I've chosen for this post is rated PG-13 for language, and is not aimed at anyone in particular.)
Of course, if you spend a lot of time reading and commenting on blogs, it might be worth the 5 minute investment of time to get a blogger ID. (Especially if you already use gmail, you'll always be logged in.) Then you could have a user profile with whatever background info and helpful links you'd like to include.
There's that acronym- HALT. Don't do anything when you are
H= Hungry
A= Angry
L= Lonely
T=Tired
Sometimes, when feathers and fur start to fly here, I write a rant, then think of the halt acronym. Usually, I am tired, pretty hungry and quite possibly angry. So, I delete the rant realising that to be honest, we can all beg to differ.
I don't mean to be trite - but after 13 years of being in this state of tiredness, a fair proportion of what I say is a reflex rant that might best be left unsaid. Or at least unsaid at that time until I am less hungry, have had some rest, talked it out with someone else etc.
I am sure you get the picture.
Peace out!
Nancy wrote: ""From Helen Harrison to "kellars mommy" who asked:
"did i strike a nerve?"
***
More like a gag reflex."
Does this not constitute being nasty to another person? And will this be tolerated??"
Hi Nancy,
To be honest, in the past I have tried to stop it before it starts. But, when one person feels attacked, I feel it is only fair to let them answer back. By asking someone, with tone to the question, "did I strike a nerve?", I'm pretty sure most all would respond.
And, I am not singling out Helen and Kellars mommy. It has happened with many other participants on this blog and others.
In a perfect world, no one would be arguing. I am on only child so I do not do well with snarkiness. I really don't. It stresses me out more than it should. When my husband reads the comments he simply rolls his eyes and chuckles. Once he said, "You are stressed out over THAT? You should have had my older sister."
Again, passion drives us. I've been on the receiving end of many nasty comments myself and thrown a few too. I think I'll be remembering long term listener's acronym. HALT
I'm going to do a bit of Helen help here.
Facts, journal articles, and statistics should be part of this discussion at all times. These are the tools we should use to determine policy and to change practices. It is emotion that frequently gets in the way of a sound policy.
And, Helen, you can just click the Name/URL button to input your name without the URL with it. I do it. That will make it easier for others to ignore your comments, although I think they shouldn't.
More like a gag reflex?
Come on Helen, surely with all the research you do you could find something a iittle better than that. And yes I have noticed that it IS okay for HH to talk to other posters however she pleases, it doesn't matter what she says it seems to be condoned..I don't have a problem with statistics really I don't, but when someone post about their 24 wkr is doing wonderful, the following post always seems to be about something negative or how the majority of those babies end up with such and such..And I keep looking at the original post and can't seem to figure out where the need for all of your studies fits in? Is it just to try and *prove* your point, to try and shove what YOU think should be done with these early babies. My question of did I strike a nerve could have answered a little bit more maturely instead of "a gag reflex" but I must say I have my laugh for the morning, thanks Helen..
Stacy,
I don't see where there was any *tone* in my ? to HH..I can read back through some of the post and see where HH wasn't exactly playing fairly with other posters. Granted you didn't stop or step in, but when someone ask about what HH said you basically say that I was in the wrong for my "did i strike a nerve" comment so therefore HH had the right to retaliate, right?
“I have great respect for everyone who shares their experiences and greater respect for those who listen because much is to be learned from each other.”
I have to reiterate this because I think that is the problem. One needs to truly listen to each other’s opinions, without the need to campaign them over to your way of thinking. Even if we disagree, which will happen, we must remember that we are all very real people behind these typed words. People with genuine feelings living lives that have been altered by prematurity. And after reading these posts, I feel the need to remind people that Helen Harrison is a real person too. She has never said I don’t think neonatologists shouldn’t resuscitate babies less than 26 weeks. IMHO, she only advocates awareness and choices. And I for one love that she can back her comments with statistics and study data. This is no easy feat to come by, as she must dedicate a lot of her time to do this. I, for one, benefit from the information she shares with us on the latest released studies/discoveries, as this information is hard to come by and pertinent for any parent of a micro preemie.
In ending, an opinion is neither right nor wrong; it is just one’s thoughts. However, if opinions are followed up with proven data, then an opinion becomes a fact. Facts can be believed or disputed, but I guess that is the great thing about choice. No one can make you believe anything you don’t want to believe or not ready to concede to because we are all at different places on this journey. Ah, but to pay attention, to truly make an effort to hear where someone is coming from or more importantly where they have been, could make all the difference on yours.
-Tammy-
Yes I agree Helen is a real person, with real feelings but so is everyone who reads this blog, everyone who comments on this blog. I am not saying there is anything wrong with her studying, researching or whatever she chooses to do, but there are times when she quotes her studies after someone has posted about how well their child is doing, to me it's a well if you think your child is doing so well look at these studies, look at how many kids end up with this and that after they enter school..That is what bothers me, it's not that she has research to back up what she feels,that's fine I have a 2 yr old that is doing everything the dr's said he wouldn't to back up my feelings. If we want to get on the subject of feelings, go back to the post about preemies and pain and read her "not impressed with that one" comment, she said that to a poster who commented about cancer and that a pt with cancer is treat bed ( something to that matter, I am not quoting is word for word ) then she comes back very sarcastically with her not impressed comment, well the person she said that to has a mother that has cancer, so you know she should think about other peoples feelings as well, sure she didn't know the situation but this person had feelings and presented her opinion only to be shot down..
that should say that a pt with cancer is treated ( my son got to pushing buttons on my laptop and i couldn't figure out where he had the cursor..)
I personally don't mind when Helen posts statistics here; for one reason it usually doesn't apply to anything I find valuable...in other words I made my decision about resuscitation so nothing in them really impacts me. If 90% of babies at 23 weeks end up with X, it's not as significant as if S&E have X. In other words, I'll deal with what comes my way with my kids when that time comes, no need to compare how many other kids in a certain study have X.
What concerns me is the implied conclusions that come out of the studies and her remarks. She keeps it safe by saying *she* wouldn't chose resuscitation before 26 weeks, but believes parents should have a choice, only if they are given all the information, preferrably when they are teens in biology class. I found a piece she had written where she talks about how many affects of prematurity are usually mild, something I have never heard her talk about here. Here, it's usually the incredible suffering that preemies endure, although a few times she has talked about her son's many ABILITIES, and I find them fascinating. I wish there was an acknowledgement that there are preemies who do not endure life long suffering.
What I worry is that there is such a varying degree of disabilities that very early preemies face, and I wonder how ethical it is to make decisions on life or death based on this wide range. There are children severely affected and there are children in mainstream classrooms with no notable affects; Nancy's daughter for example (correct me if I'm wrong here Nancy I'm going off what I've read in your blog.)
I know there is suffering that is worse than death. I also know there are plently of full term babies who go on to develop learning disabilites and mental illness.
There was a comment made about "survival of the fittest." Why then do we have babies born healthy who go on to have severe disabilites? Why do children with significant gentic mutations arrive at term? There is nothing "perfect" about human biology.
I'm trying to be controversial or debate with anyone. These are the thoughts that go through my mind when I read these comments.
Kellars Mom said:
“but there are times when she quotes her studies after someone has posted about how well their child is doing, to me it's a well if you think your child is doing so well look at these studies, look at how many kids end up with this and that after they enter school..That is what bothers me”
And again, I must reinterate:
Facts can be believed or disputed, but I guess that is the great thing about choice. No one can make you believe anything you don’t want to believe or not ready to concede to because we are all at different places on this journey. Ah, but to pay attention, to truly make an effort to hear where someone is coming from or more importantly where they have been, could make all the difference on yours.
I could actually feel your passion on this but want you to know that
Helen Harrison’s opinions/comments/quotes on studies after someone has posted how well their child is doing DOES NOT trump that person’s post or devalues it. Only the reader can put life or imply intent to the words. I am just trying to say that the intent we imply to others words are sometimes blurred by where we are and what we are experiencing when it comes to the outcome of prematurity. It is not easy and to paraphrase Stacy, sometimes we have to put our heads in the ground because we just can’t take in anything else. I am just encouraging everyone to listen to each other without implying intent to others words and most importantly, without voiding your own voices/thoughts. Because the reality is each one of us brings value and insight to this blog.
-Tammy-
23wktwins’mommy said:
These are the thoughts that go through my mind when I read these comments.
Thank you for continuing to share them as they are valuable.
-Tammy-
I'm always struck by how what upsets people on this blog is never our parenting choices, and rarely the CONTENT of what we're saying, but HOW it's said. We're all protective of our children, and it's natural (at least for some people) to apply general statements to our own lives, and they're not always applicable or aimed at us personally.
I think that there's also a huge theme of people feeling that the conversation, or certain contributers, are too one-sided. I suspect that our actual opinions and feelings aren't that far apart, but no one wants to see the conversation tilt too extremely one way, so they throw out a huge contribution for the opposing viewpoint. It's like a few people are shouting the same things at each other, over and over and over, feeling like the other person isn't hearing it. If we acknowledged the truth of both COMPLEMENTARY viewpoints, everyone could calm down, feel heard, and deescalate.
I think that if we were all having this conversation in person, it would go differently. When we type to each other, what if instead of picturing ourselves at opposing podiums at a debate, or on opposite sides of the street with picket signs, we pictured ourselves sitting around a table, having coffee. (Or better yet, DRINKS.) When someone shares a difficult personal story and cries, some of us would jump out of our chairs and give that person a hug or a tissue. When Helen says, "That's very interesting, there was a study about that very topic!" Some would gather around her chair to see the article she'd pull out of her briefcase, and others would smile, roll their eyes, and take the opportunity to go get us all another round.
How differently would this conversation go if there were less trying to change people's minds, and more acknowledgment that we hear each other? What if we came into these conversations presuming that everyone has good will, so that when things are said that can be interpreted more than one way, we can be generous instead of defensive in how we read it?
What if we started counter-arguments with statements like, "I hear what you're saying. I understand how you would feel the way you do, given your situation. However, I don't feel like that is quite the same for my life, because..."
Maybe this is the middle child in me, but I feel like when I read debates on this blog, I can identify with EVERYONE. I see where everyone's coming from, I see how they misunderstand each other, I see what people meant to say AND how it could be misinterpreted... I can't tell you how many times I've written posts along the lines of "That's not what she meant!" and then deleted them, because that isn't my role here.
I wish we could act more like a community and less like a debating society. Virtual hugs for everyone!
Well said, as always, Kathy. It is good for us all to remember that we all love our children and that we all share a common experience. It really would be nice if we could be gentler to each other. Most parents of full termers can't begin to understand us, our experiences, our emotions, etc.
The thing that can be said for all of us is we have all stared in the face of prematurity and lived to talk about it.
Helen Harrison responds:
I have been away from the computer for the day and have returned to find many posts still bringing up my name, and not always in a very positive way.
And, so, I'm left with a familiar dilemma: Do I dignify mispresentations with a response? Or do I just walk away and have the insults later repeated as gospel since I chose not to address them?
***
I can't begin to get to it all, but...
I have been taken to task for posting research results on this thread by anon 11:57 (Feb 26) who complains:
"A post about difference of opinion is not really the place to continue to post study after study. If it were, the title of the post might be "Please cite journal articles."
Anon, someone asked me if I had evidence to back up my statement that most very early preterm births were caused by intrauterine infection. [See anon 5:15,Feb. 25]. As it happens, I do have the evidence and I cited it, as requested. This seems to have made you angry. Why? What would you have me do?
***
"Kellar's Mommy" feels I have been insensitive to cancer patients, apparently by saying that I did not think a course of chemotherapy is the equivalent of a course in the NICU for a micropreemie. I am truly not "impressed" with the argument that the two are similar, even in that they both can cause harm.
But I do not take cancer lightly, as I also have friends and family who have died (the most recent -- 2 days ago) or are dying from it, some having refused chemotherapy in favor of comfort care.
***
Some of you seem to feel I should not be posting here at all, or that I post too much. I would like you to go back and review how this discussion started.
I have posted here only in response to those who launched gratuitious insults at me. If you stop, you will hear much less from me. It's all so simple!
***
Finally, I kinda like Kathy's idea of us all gathering for a drink somewhere!
Cheers!
Helen Harrison
kellars mommy wrote: "Stacy,
I don't see where there was any *tone* in my ? to HH..I can read back through some of the post and see where HH wasn't exactly playing fairly with other posters. Granted you didn't stop or step in, but when someone ask about what HH said you basically say that I was in the wrong for my "did i strike a nerve" comment so therefore HH had the right to retaliate, right?"
Here lies the problem with blogs/the written word... emotion or tone gets lost or misunderstood. I was not saying anyone was wrong but I do think that your comment ("did I strike a nerve")would cause me to retaliate. I wasn't blaming or complaining about either of you.
Another thing to remember... I have been called a b*tch a few times and accused of being negative and quick to attack. Why? Am I a b*tch? Who knows. But, I've spent a number of years talking about a subject that can cause others to be volatile. I'm used to being attacked and I tend to be on guard and quite used to being on the defense. I think that colors words.
Too bad we all live in different parts of the country...it would be really cool to get together and talk over drinks.
We discuss a lot of emotionally-charged and sometimes depressing topics. Can one day we all post some of our favorite things about our children? I'd love to hear from people about this.
kellars mommy
Helen,
I am not sure if you read what I wrote. Another poster had commented about feelings, that you had feelings and were human. I took that as we all need to think about what we write and say, I do agree with this, but I felt at the same time you too need to be aware that others here have feelings and therefore it would be nice if you take a step back and think before you speak as we all should..I used the example of the cancer topic b/c you in my opinion blew off this posters *comparison* of the 2, then went as far as to say you were not impressed w/her opinion.. this lady's mother has cancer, you did not know what she was going through but...there is where not only you but i'm sure me as well could stop and think about how what we are about to say may make one feel? i wasn't implying that you were being insensitive to cancer pts, just very insensitive to that posters comment, to her it was a genuine issue that obviously is very close to home with her and after reading her mother has cancer i felt it was insultful.. i am not looking for debate, nor am i looking for a sarcastic answer from you, i think we have all came to the conclusion that conversating over a computer is not the best way of communicating...
Thank you. That's all I can say for posting this.
To kellars mommy who wrote "I am not sure if you read what I wrote."
Believe me, I tried.
What do you want me to say? That I think chemotherapy equals NICU care? I'm sorry, in most cases, I don't.
Helen Harrison
Obviously you are not understanding what I am saying, my purpose of using that example was about FEELINGS and to be mindful of things that are said, nothing to do with nicu care verses chemo care or trying to convince you that one is just as bad as another, just how you *in my opinion* were rude with your response to her and never took into consideration how her feelings may have been with what you posted in response to her comment..you either really don't understand what i am trying to say or you just don't want to, either is fine but let's drop it, no sense in keeping this going when you say you don't understand the point i'm trying to make and i don't feel i could put it any plainer..
A previous blogger mentioned that newer parents and parents of former preemies who are doing well are hesitant about joining the discussions here.
I have to share that parents of former preemies who are not doing well may feel the same. It is extremely difficult to have normalcy or near normalcy crammed down your throat when dealing with such an extreme situation personally on a daily basis.
Perhaps it boils down to negation - negating the others' position when the position is not your own. This is going to always be a challenge, and ESPECIALLY when it involves continued suffering and challenges faced by a child and family.
I'm bothered by those who profess to speak for me by representing themselves as the "preemie norm." The preemie norm covers the gamut from not affected to very very severely affected. Unfortunately, the younger the preemie, the more affected for the most part. .but the nerve that gets hit is when only the "miracle baby" side is presented to the media, or when those who do present other than anecdotal information are shot down. I've been called bitter, a bad mother, accused of not loving my children, etc etc, when nothing could be further from the truth.
How much we could accomplish for help for our children, or changes in how NICU care is practiced, or how social services is delivered if our numbers could come together and speak in one voice!
I am the mom of a 27 week preemie and would just like to obtain more information on what the future may hold. My son has done well so far, despite being delayed developmentally. I lived in a constant state of fear during his first year. Would be be able to crawl or walk? Would he be able to talk? My son is doing all of those things, just a bit later than his adjusted age peers. Can someone please provide more info on the potential things that happen at 3 years of age? What should I be watching for? Where can I find resources on recent US stats? Exactly what percentage of kids do turn out to be OK?
While I appreciate reading all of this cerebral cat fighting (interesting to read so many different perspectives), at the end of the day, I really would just like some credible information on what to expect down the road with my 27 weeker.
anon:
you will obviously have different ( very different ) opinions on what to expect..i for one think it is difficult to tell someone what to expect of their child when they are such and such age as ALL children are different..have you googled 27 wk preemie? i'm sure someone here will have great info to share, i can see where the difference of opinion post hasn't been beneficial try searching out on the net, there are several blogs out there that parents tell of their childs progress, their milestones they have met, haven't met, what diagnosis they have etc..
I'm not an expert of this, nor do I pretend to be, I'm sure people who have more time than me, and are more research savvy will provide you will a lot of statistics. What I can say from what *I've* read and got to know through my involvement with families with preemies, is there is a varying degree of long term affects. Terri w/ 2 pointed out in a recent comment that it ranges from very severely affected, to mild and *sometimes* no affect. But to be fair most of the families I know have micropreemies, so this may differ for the 27 weeker. In other words, most all micropreemies I read about had or have some affects, and I concede most are still under 3, because blogging wasn't as "cool" 3+ years ago and I wasn't part of a family committee until my 2 were born 17 months ago.
I think it may be obvious to state that if you son is walking, you can rule out *severe* CP. How is he eating? Does he appear to be sensitive to different sensory stimuli? This is something to watch for as many preemies have sensory issues. As I'm sure Stacy and others can tell you, even by 3 it will not tell you everything.
Stacy has done a good job of providing links to preemie parents who blog about their children. Then you can also always check out the links that that parent's blog has listed to read about even more. Sometimes it's helpful to read and know statistics and sometimes it's nice to get a first hand look at children of similar gestations.
Anonymous wrote: "at the end of the day, I really would just like some credible information on what to expect down the road with my 27 weeker."
Dear Anonymous,
All preemies are different. The reasons why they were born early, the drugs used in the NICU, steroids, etc... all play a factor. It is impossible to say, just based on gestation, what may be in your child's future.
I have been trying to catch up on labeling my posts so information will be easier to find. But, I've been slacking. lol Some of the labels (in the right margin, on the main page) will have useful info for you.
2 posts that may be of interest to you would be
http://thepreemieexperiment.blogspot.com/2007/02/invisible-issues-related-to-prematurity.html
from Feb. 4, 2007
and
http://thepreemieexperiment.blogspot.com/2007/01/outcomes.html
from Jan. 17, 2007.
If you there is anything that those 2 posts don't answer, please feel free to email me and I will help you however I can.
Stacy
Ok, it looks like the links may be getting cut off. You will need to use the dates below the link to find the information. If it would be easier, please email me and I will send you the links.
Stacy
Helen Harrison offers:
To anon 8:30:
I have worked on an international research project (Premature Outcomes Research Project -- based at MSU, funded by NIH) looking at school age outcomes of very low birth weight children (born at less than 33 weeks and/or with birthweights below 1500 grams), and continue to follow the outcome data closely.
I would be glad to share the mountain of information I have accumulated on the topic. Specific questions on areas of concern you may have would help me know where to start.
If you would like answers on this blog (other than the info in the threads Stacy has referred you to already), please feel free to ask.
If you would like to contact me privately, email me at Helen1144@aol.com
Helen Harrison
Once again, to represent the silent group of parents of former preemies that ARE NOT PERFECT success stories, yet ARE NOT REGRETTED OR RESENTED. We are the parents of the physically handicapped or the mentally challenged. We are the parents that deal with the unrelenting seizures, the emotional upsets, the physical limitations, the social abandonments, the "cruel twists of fate" as it were, and yet we still, against the weight of all "studies" and "research" find true worth and value in our children's lives. We do not consider them "failed experiments", but instead human beings with much to offer, if only the world would pause to listen. The words and arguments listed here are painful to read, much more so because many are written by parents that cannot see the value in their own children ---- parents that fight for their right to die, without ever considering what they would have to offer if they lived.
Anonymous above. .I read your comment with a mixture of awe and suspect. . .
Much has been written about parenting children with disabilities, the challenges, the grief - Kubler-Ross' stages of grief normally used to describe what loved ones go through during a death, also apply to parents raising children with disabilities. Denial is a biggie.
I do not believe that any one of us here has said that our children are not valued. .Quite the opposite is true. It is because I value my children that I was willing to set my own needs aside - the "I wants" and say "what is in their best interest". .sometimes what is in someone's best interest is to let go and NOT subject them to the horrific treatment of NICU "care." THAT to me is the ultimate loving gift. Each case is different and unique - others might choose a different path.
Also, my children ARE here, and we are bumping along the road. . 'been bumping along the road for 22 years, and it is a hell of a ride - poor social services, lack of health care, poor education, divorce, financial devastation. These are the truths for quite a lot of preemie families. On top of that, and most of all is the suffering our children have endured. It is very brave of PE to allow us these discussions - and voice the "perhaps things would have been better if". .this is not to say that people with disabilities have no value - certainly they do! But, at what cost for them, for their families and for society.
And isn't it an irony that while there are groups fighting for the rights of the disabled, the disabled now have no rights to say "no" as others do?
Someone needs to discuss this - who better than the families who are navigating these waters on a daily basis?
Anonymous wrote: "We are the parents that deal with the unrelenting seizures, the emotional upsets, the physical limitations, the social abandonments, the "cruel twists of fate" as it were, and yet we still, against the weight of all "studies" and "research" find true worth and value in our children's lives."
Never, never have I said that my child does not have value. I dare you to find any place that I've said this!
I am sick and tired of people assuming that I don't love or value my children just because *I* personally would choose limiting resuscitation based on an early gestation.
My daughter has value now. I feel honored to be watching what will come from her in the future as well.
But, the bottom line is that prematurity affects many areas of families and society.
There are many voices that deserve to be heard, not just ones that are easy for everyone to hear!
Perhaps the anonymous above post DID come from a parent - but I am suspicious. What parent could so easily dismiss the horrific challenges of having to stand by and watch their child endure "unrelenting seizures, the emotional upsets, the physical limitations, the social abandohnments, the cruel twists of fate". .sounds like perhaps a neonatologist wrote this. Someone who wants to negate how difficult it is to deal with these issues day after day, year after year, decade after decade. .
Hi all,
I've been reading this blog and made it up to the "gag reflex" comment by Helen, where I laughed out loud - what a hoot!
I read the posts reflecting the obsession and dissection of Helen's use of the words "damaged" and "fetus" referring to the aftermaths of Listeria infection.
And I wonder why I didn't read any cries of outrage or endless obsessing when Helen posted the following quote from Dr. William Silverman’s article in the “First Do No Harm” blog on this site:
“It occurred when a new chief of obstetric anesthesiology was called to be present at the delivery of an extremely small baby at about 23 weeks of gestation and weighing roughly 500 grams. The neonate did not breathe spontaneously and had no pulse. The new anesthetist asked for a scalpel, opened the chest with one stroke, and began to squeeze the heart directly as he yelled for someone to intubate the baby immediately. No one prior to this had ever dreamt of using open-heart cardiac massage for the resuscitation of the newborn. Needless to say, this incident had an electrifying effect on the crowd of open-mouthed young people in the room. This was a very loud signal indicating how far resuscitative efforts were now prepared to go. The fact that the neonate died a few hours later was dismissed as an irrelevant detail."
Where’s the shock? Where’s the outrage? Where’s our sense of horror? Where are the posts reflecting the normal human response to THIS scene – THIS scene in the 1950’s that set the stage and accepted parameters for what was to become accepted in neonatal care? THIS scene – where a man uses a knife to split open the chest of an expired infant with no apparent pulse or respirations – some mother’s precious child AND her grievous loss - and then INTUBATES this child. THIS scene, where the reality of these actions become rationalized, obscured and somehow acceptable by using words that describe a medical procedure - with words like “resuscitation”, “open heart cardiac massage” and “scalpel”. Where’s our gag reflex when we read THIS paragraph?
It is interesting that there was only silence in response to the description of this real life event that helped to set the stage for the subsequent experience of every one of us. Yet there is endless outrage, attack and defense over semantics and opinions.
Joan
Helen Harrison to Terri w/2 who said "sounds like perhaps a neonatologist wrote this. "
I'm inclined to disagree. I think neonatologists, even those with awesome literary skills, would be educationally and culturally unable to compose that particular post, even if they were trying very hard.
I may be wrong... but I suspect it was written by a new (or relatively new) preemie parent who is flailing about, in desperation, trying to find a workable philosophical stance from which to confront a very difficult reality.
I hope this person eventually finds some degree of peace, but s/he will learn, in time, that hurling baseless insults at those further along the road is not going to help.
Helen
Oh yes Helen, that is exactly what it was, another "newbie" who has no clue what they are in for..(eye roll) Thank goodness you thought of that, maybe after reading this they have changed their mind..
Joan, you're right. That description nauseated me, on more than one level.
There are just no words to respond to that kind of horror show.
Joan, I was quite distraught when I read that too. Where was the parents' permission for such uncivilized treatment? We wouldn't even allow our cats or dogs to undergo something that horrendous.
Helen writes:
I may be wrong... but I suspect it was written by a new (or relatively new) preemie parent who is flailing about, in desperation, trying to find a workable philosophical stance from which to confront a very difficult reality.
Here you go Stacy, a precise example of Helen not respecting differnece of opinion. Maybe anonymous should not have talked about other people's opinions on their children's lives, but why does there have to be an assumption that this is a new preemie parent "flailing about" just because they don't see their child's life the way Helen does?
I have a friend who has a 9 year old son. He suffered a stroke in utero. Upon delivery it was clear he had massive brain swelling. As a result of the traumatic birth, she is unable to have anymore children.
Her son has multiple disabilities. Only one side of his brain functions. He is blind, non verbal, and has CP; he is just beginning to walk with his AFOs. We talk candidly about life and by no means is she in denial or searching for anything. She knows her life is extremely hard, and actually pretty damn unfair. She knows her son suffers at times, BUT *in her opinion* he is not better off dead. She lives with her son and sees him every day. She sees him smile and enjoy himself, so who are we to say she is wrong and "looking for a philosophical stance?"
There could be two people who have children with identical medical and developmental issues, and it is not fair to say the parent who is thankful her child is alive is wrong, just like it's not fair to judge Terri w/2 or Helen. Although it is a hard for *me personally* to hear the way they talk about their lives, this is the way they see their lives with their disabled children. We have no right to tell them they are evil people who don't love their children, and they have no right to tell parents who do not see their lives that way that they are wrong, in denial, or searching for anything.
Any parent who loves their child does not want to see them suffer, but some people do not have control over that. Not everyone can blame neonatology. Many people have children with disabilities, who suffer, and there is no one to blame. So to say all parents who do not see their lives the way Helen and Terri do "are new preemie parents" discounts the many other parents who have children with disabilities who were not born prematurely.
You see your life and your child's life the way you want and allow others to do the same about their lives and their children's lives.
I completely want to echo the sentiments of the early responses to this blog entry, whose posters feel disheartened by the strenuous efforts to inform preemie parents how misguidedly optimistic they are.
I, too, wonder why do I periodically visit and post here? I decided it is for two reasons: (1) I enjoy reading stories about Paige, and seeing her adorable pictures; and (2) I don't want new parents of preemies to believe that the posters here speak for all (or most, or even a small minority of) preemie parents.
In theory what is wrong with "educating" parents about the longlasting effects of prematurity? Nothing in theory. Why do I feel repulsed to the core by the activity and these messages? Because as a preemie parent myself (twice over) I could not utter ONE word, let alone devote years of my life, energy, and essentially ALL of my words, to "educating" others to question whether a life begun prematurely is worth living. It IS personal. I could more understand if a medical ethicist were writing on this topic. But I feel a visceral need to OPPOSE mothers who ask me to respect their right to use their children as examples of why extremely premature babies may not be worth saving.
Sorry, I should've finished my thought. While I feel compelled to oppose the use of one's own children as examples in the quest to limit resuscitation of extremely premature infants, I would not recommend withholding support for parents who would do so. In fact, I think those parents are in need of emotional/psychological support, like therapy. They are probably depressed, angry, trying to make sense out of and contribute to this world like everyone else. I happen to believe the approach is destructive and not constructive, however. If I met a mom who told me she wishes her child had not lived, and expressed sadness that his life made it impossible to bear more children, I'd certainly feel sorry for her and wonder if she needed help coping with the demands in her life. I would not feel the need to support her in her views opposing doctors who seek to protect unborn babies with all the resources at their disposal. It's not that I don't understand her feelings, it's that I don't think it's a valid option, I don't think it's a morally correct option, and I think she is probably suffering from emotional illness.
From Helen Harrison to 23 week twins' mommy who said:
"why does there have to be an assumption that this is a new preemie parent "flailing about" just because they don't see their child's life the way Helen does?"
***
Because the internal evidence of the post strongly suggests that "anonymous" is both a "new parent" and a "flailing" parent.
Most experienced parents no longer feel the need to lash out in the way anonymous does, or to ascribe invented positions to others, then attack them with this sort of raw vitriol.
"Anonymous" sounds more like someone carrying on an internal argument, flailing against his/her own demons, than someone honestly addressing what is being said here in the blog.
Most experienced parents are more or less settled into their way of thinking about their situation and their children.
They do not have a deep inner need to insist, contrary to evidence, (as "anonymous" does) that we "cannot see value in [our] children" or refer to them as "failed experiments."
Speaking for myself, if I did not deeply love and value my son, I would not have cared of him for 32 years. We can afford to put him in a good institution, and have often been urged to do so by various well-meaning people.
Instead, my husband and I provide 24 hour a day care for Edward whether he is at home or in the hospital. We appreciate, and are grateful for, his good times, and do not want him to suffer or to die. But his death would be preferable, to us, than say, a life of "intractable seizures" or a life of constant shunt problems and pain. I wouldn't want such a life for myself. I don't think *he* wants it for himself.
I wouldn't want to have to endure what he did in the NICU to get to where he is today. I doubt that would agree to NICU care either if we could rewind the tape of his life and give him a choice.
Others may disagree for themselves and their children, and I have no problem with that. No one has to think as I do about this.
I would suggest, however, that any person who feels the need to hurl anonymous insults at me or Terri or Stacy or others who clearly love our children ... I would suggest this person appears to be "flailing."
This anonymous person's need to lash out in such a dishonest and ignorant way shows cowardice, fear, instabily, and, almost certainly, inexperience at "special parenthood."
Many of us have seen this pattern of behavior over and over again on lists and blogs. (I've been seeing the "cycle" for the last 12 years, at least.)
Those of you who are new to preemie parenthood may be unaware of how many legions of others have gone before you, saying the exact same words in the same virulent way.
New parents say these things because they are hurt and struggling and threatened by perspectives of older parents (and, implicitly, of what the future might hold for them).
The reactions the parents who came before you have given, as well as your own, can almost be graphed on a chart. And yes, these perspectives do tend to change with time.
Preemie-list and preemie-child had to separate into two lists many years ago because of these scenarios and cycles. New parents could not handle the way more experienced parents discussed the difficult issues they faced and the hard-won knowledge they had acquired.
But, in time, many of the harshest critics of the older parents have become older parents themselves. Some of them, in time and with changed perspectives, joined NAROF and preemie-child; others are on this blog and other lists, being attacked by a new crop of new preemie parents. And so it goes...
Helen
Helen, It is not true that given enough time and experience as parents of premature kids that all, most, or even a small minority of parents will share your views. There are no doubt some like-minded and well-meaning individuals (with what I believe is a lack of understanding of the value of human life) who find each other on the Internet. I do not say this in anger, it is simply the conclusion I have drawn as an experienced preemie parent observing my own feelings and actions and those of other parents of preemies. I am very heartened that the scientific and medical community does not take such a dismal view of premature human life, and are not swayed by the pseudo-scientific, biased, and outdated "studies" often cited by Helen and others here.
Sorry everyone for jumping in with multiple posts. I wanted to give you some history on me--one of the first Internet sites I came across as a preemie parent was Helen's old premature baby/child site. I was immediately struck by the lack of balance and focus on the negative. In some ways I have Helen to thank for my convictions now--I was determined never to write or say anything which, if my kids read later in life, would damage their psyches. The pen can be mightier than the sword, it's true, and the wounds to the psyche inflicted by those words far greater than diseases of the flesh. Imagine reading the words of your mother, implying if not stating outright that you would be better left for dead. That horrifies me as much as the surgeon who in 1950 (before he knew better!) took a scalpel to an infant's chest.
Helen Harrison responds:
To anonymous who has a "a visceral need to OPPOSE mothers... who don't share her right-to-life-at-all costs views and considers them to be suffering from "emotional illness."
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Then you are opposing 2/3 of all pregnant women who, when given information and options, chose genetic testing prenatally and overwhelmingly chose to end those pregnancies that are not normal.
Are all these women "emotionally ill"?
You also state "I am very heartened that the scientific and medical community does not take such a dismal view of premature human life, and are not swayed by the pseudo-scientific, biased, and outdated "studies" often cited by Helen and others here."
However, the scientific and medical community -- which conducts and writes the studies you think are "biased" and "outdated" -- also rejects the idea of having their *own* extremely premature infants subjected to aggressive NICU care! Maybe they are "emotionally ill," or maybe some of them know something you weren't told.
And, maybe, just maybe, you keep coming back to this blog because you are insatiably, viscerally curious about what it is they/we know and you don't.
However, if life-at-all-costs is the name of the game to you, why should it even matter what the outcomes are?
Helen
Helen Harrison to anonymous who mentioned "Helen's old premature baby/child site"
FYI, I have never had a website.
Helen
Helen, I can certainly appreciate that what your son had to endure in the NICU was extremely painful and experimental, and to bring him to the life he has now, only he, and most likely through you as his mother, can attest to whether or not that invasive care should have taken place. I'm not in either of your shoes, so I can only take your word that he wouldn't have chosen it could he have known his outcome.
The major issue I have is there is no way of knowing these things. Perhaps in your case more so because of the bacterial infection, and I know you have studies, but even in a case like Paige, there would be no telling that this 25 weeker would be in mainstream classes, performing very well academically, but suffering with mental illness.
It is fine for you personally to opt not to resuscitate if you were to become pregnant again. But there is a problem in assumpting that once preemie parents get older they will see life the same way you do, and hence agree that invasive NICU care before 26 weeks is not the right choice. I can see how parents *might* feel this way should they be under an assumption that their child would walk away with no issues. And I can see how a parent of a severely affected child may also feel this way. But the parents of children who are doing well would probably not agree with this no matter if their child was 32. The entire problem with this whole prematurity thing is there are varying degrees of long term outcomes. Notice I'm not saying some are completely unaffected...but there are varying degrees, many of which do not include enduring physical pain on a regular basis.
Obviously outcomes *can* shade people's views, and this is why some will change and see life as you do, and why others never will.
You can't discount the children who are not as severely affected. These parents, I'm sure, are very thankful for neonatology.
And then there are the parents who have severely disabled children who will still not see life the way you do. This doesn't mean they're in denial. They're not wrong to be thankful their child is alive, and you're not wrong to have your views. It's a personal opinion on life, and it's not fair to make judgements about the quality of someone's life...as bleak as it may look to the outsider.
Helen Harrison replies to "23 week twins mommy" who said:
"But there is a problem in assumpting that once preemie parents get older they will see life the same way you do."
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I have never *assumed* that they would, even though, in my many years of experience, they often do.
The "problem" here is you and others keep inventing and attacking positions I do not hold.
Helen
"I have never *assumed* that they would, even though, in my many years of experience, they often do."
Because you have seen that "they often do" isn't that the same as assuming that these parents posting anonymously will also? At least that is the tone or idea that comes across in your comments.
Not trying to beat a dead horse here, but that seems to be an argument that you state quite often. That once these parents have become more seasoned preemie parents, they will come to see your point of view and possibly even begin to agree with you.
I think that's what Stephanie is trying to say, that despite the fact that you have seen some parents change their points of view in the past, that doesn't imply that once preemie parents hit a certain year (becoming a veteran) they will agree with your point of view. And now matter how many times and how many different ways she tries to say that, as well as others, you can't seem to get that.
Also, just out of curiosity, because you mentioned a poster being a "newbie," when does one stop being a newbie preemie parent and morph into a seasoned one? I'm not being sarcastic, I really do just want to know what age you consider a parent to no longer be "new" at that position.
To Nancy who asked when one stops being a "newbie":
It is whenever one has a clear and realistic view of his/her child's future.
For those whose children are severely handicapped, that may come early in first five years or so -- but even in these cases, the proverbial shoes continue to fall throughout life.
Each course is different, but I would say (and researchers agree), that at least 6 years of follow-up are necessary to diagnose most severe handicaps in preemies.
Research to be presented later this year may push that age even higher.
Our son would rate as "mildly handicapped" on many studies. He was walking, talking, and reading before he was two. At age 3 he was declared "advanced," intellectually and socially, by the NICU follow-up clinic psychologist. We were hopeful that his shunt was no longer needed.
I ceased being a "newbie" when I realized that Edward would never be mainstreamed or capable of independent living and would probably be shunt dependent for life.
That was when he was about 8 or 9 years old, although the full impact of his health issues and disabilities continues to be revealed 32 years later.
I have never changed my mind about the resuscitation issue. But my views on this matter were never tied to our son's individual outcome.
Helen
Anon
I think you put into words what so many of us as we are very often referred to *newbies* or *new preemie parents flailing about* that come here feel, not all of us may feel this way but I know of a few that do..To me there could be nothing any worse than to one day find out that your mother *felt* that you were better off dead, how awful would that be to one day come to that realization that you were such a burden, that your mother felt your life wasn't worth living? Helen I have to ask, if raising Ed was such a burden, if it was so hard on you emotionally, physically and you felt that his life was that awful why didn't you put him in a home? ( I don't mean that in a ugly way but more just really curious )I believe that every human being serves a purpose, those with disabilities as well..I would never ever want Kellar to see something so negative, nor would *I* ever say that..There is a old saying the Lord giveth and the Lord taketh, so I believe in being careful what you say and what you ask for, but that's just me and my belief and I have said it before the love for my child is greater than any disability...
Helen Harrison, again to Nancy who said: "that doesn't imply that once preemie parents hit a certain year (becoming a veteran) they will agree with your point of view. And now matter how many times and how many different ways she tries to say that, as well as others, you can't seem to get that"
***
What you don't seem to "get" is that I don't think veteran parents will necessarily "agree with [my] point of view" (whatever that means).
However, many will moderate their views considerably as time goes by, at least enough so that they can engage in thoughtful and substantive discussions about prematurity and lose the need to make "visceral" ad hominem attacks on other parents.
But I'm certainly willing to stipulate that you and "23 week twins mommy" will never change or moderate your views.
Helen
To Kellar's mommy who asked "Helen I have to ask, if raising Ed was such a burden, if it was so hard on you emotionally, physically and you felt that his life was that awful why didn't you put him in a home? ( I don't mean that in a ugly way but more just really curious )"
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It is really pathetic that this needs continued explanation, but here goes...
We never put Edward in a home because that would not have been in *his best interests* and Edward's best interest is what my husband and I have always felt was paramount.
Yes, caring for him has been challenging and difficult, especially so now that we are all getting older, but what *Edward* has had to go through is so much worse!
He does not want to live outside our home, and has made this clear. We want to abide by his wishes and give him the best life he can have under the circumstances.
Helen
"Each course is different, but I would say (and researchers agree), that at least 6 years of follow-up are necessary to diagnose most severe handicaps in preemies.
Research to be presented later this year may push that age even higher."
What research is that? I only ask because in my experience, the more significant the disability, the earlier the diagnosis. Although, I suppose that's probably more of the low-incidence disabilities? And the high incidence disabilities are what you are talking about taking longer to diagnose? But you also state that "For those whose children are severely handicapped, that may come early in first five years or so --." I think this is where my confusion lies. It seems like you are saying severe handicaps are diagnosed prior to five and after 6 years of follow up. Can you clarify that for me?
"It is whenever one has a clear and realistic view of his/her child's future."
I think that this statement is also where some confusion comes in with some of the parents that post here. They speak as though they do have a very realistic view of their child's future. Or at least, as realistic as they can, not being able to know exactly what the future holds one way or the other. I think that most of the parents who have posted here have articulated this. So I wonder whether or not you think they are being realistic. Again, no sarcasm intended. I truly am trying to understand your messages and your point of view here.
"I have never changed my mind about the resuscitation issue. But my views on this matter were never tied to our son's individual outcome"
I think this is an interesting statement! I have often thought that a person's view of the NICU and neonatology is directly related to the outcome of their child. Although, maybe for you the relationship wasn't as profound because of your extensive knowledge of the NICU. But for most of us "lay" persons, we didn't become "experts" in neonatology until we were thrust into that world. So I think that is why I have held that belief that the view/perception is directly related to the outcome. Just out of curiosity, and pardon me if you have stated this in the past, but did your interest in neonatology come before or after Edward was born? And were you well versed on the subject prior to his birth?
To Helen,
So one stops being a newbie either when one agrees with you, or when our children are older than creek water and still have no diagnosed disabilities.
I definitely do not come here because at some level I think you are "right". Despite your statement that your views "were never tied to [your son's] individual outcome," I believe that not only are your views tied to his outcome, but that you use your "research" as a facade to selfishly and publicly nurture your own emotional wounds, sacrificing your own son's emotions in the process while ironically meeting his physical needs.
The emotional illness I refer to is one that comes after the birth of a less-than-perfect child.
It's like this is your "payback" for the sacrifices you have made for your son--to devote your life to a viewpoint that, if held at the time your son was born, would've ended his life. That sickens me and I want to ensure that other parents know that is NOT how most of us preemie parents feel. Obviously you have rationalized your life's work differently and vehemently disagree with my assessment. Yet it is what I have gathered from reading your thoughts over the years and nothing you are saying makes me think otherwise.
Helen
I'll tell you what is pathetic is your attitude towards someone who was for once really trying to understand what you were saying. Is there a problem you have with me..So what I don't agree with your views, I don't and that is that, but can you not get past that I am not of your beliefs for one second ask answer a ? that I genuinely asked with no sarcasm behind it? I do think that a lot of your problems is the hand that you were dealt, you seem bitter to anyone who as of yet has taken a walk down the path you have been. Why be like that, why not be happy for someone whose child has survived prematurity and for the time being is not another number in your statistics findings, is it that hard? Is it jealousy that we don't have that so called burdened life that you are having? I don't mean that ugly, really I don't but I can't seem to understand why you have such a hard time putting into perspective that just b/c things did not turn out the way you wanted for Ed that you have to be so critical of those of us who as of right now don't share your same view on our preemies life..You say you want to abide by Ed's wishes and give him the best life possible, I admire you for that, but then I take a look back at the post where you would rather have him pass on than to *suffer* as you basically put it..I too do wonder if Ed had been born with no preemie effects would you feel the same? Would you still feel that saving babies under 26 wks gestation was "cruel" or inhumane?
I'm really sorry Ed suffers as much as you write about. A couple of times you've talked about his amazing music and language abilities. It must hurt deeply to see your child suffer, and I'm sorry you see that, I just wish there was an acknowledgment of what joy Ed does bring to your life and about the things that bring joy to his.
So moderate my views, no I'm sure we'll never see eye to eye on many things Helen, but I do try and understand why you feel the way you do about your life.
Helen Harrison wrote: "I have never changed my mind about the resuscitation issue. But my views on this matter were never tied to our son's individual outcome."
I wanted to add to Helen's statement...
My views were also not tied to our child's gestation.
My views (personally choosing a gestational cutoff-of 23/24 weeks- if my 2nd pregnancy ended early) came about after years of being in the preemie world and also meeting people who were not given the choice. Then came hearing from docs who knew the experiments (with meds, equipment, etc) were just that... experiments. Then came the realization that there was no long term follow up.
I don't always agree with everything being said here, on either side. But, what I do know is that everyone is entitled to their choice and there are many more people out there who choose the same (on either side). Not one person on this earth is ever the ONLY one to feel a certain way.
As far as the original reason for me writing this post....
I received an email from a person who is a member of online group that I am also a member of. The person was wondering why I wasn't commenting on a thread in which I was clearly being talked about. She was very upset about the things being said about an author of a controversial article.
Since I hadn't seen the thread (I honestly do not have time to read every post on every email group I am on) I sent an email back saying I would get to it in a few days.
Then came an email from another person on the group wondering if I felt that the author should know what was being said about her. The person sending me the email was afraid for the author. The person sending the email aslo wondered how come I was letting someone talk about me on the group.
I decided I better read the posts on the on line group since I had now gotten 2 emails.
I was sickened when I read post after post of what was being done to this author. Since the moms did not like what she wrote, they did things that were borderline illegal. I also did not agree with everything the author said, but what was being done to her was horrible. (I will not disclose the specifics as I do believe in privacy)
And, for some reason, one of the members decided to tie me in with the conversation. I chose to ignore it. You know who you are. If you want to talk to me about it, you are more than welcome to email me privately. I will not argue with you on the forum. That's not what it's for.
Since then, I have received a few more emails from parents who felt bad for that author, despite not agreeing with all that she wrote about.
A simple difference of opinion. That's all it should have been about.
From Helen Harrison:
Debates like this, all too often, become threatening.
I think almost all of us parents of a certain age (experienced parents who dared to contradict the right-to-life-at-all-costs folks) have had our own lives, and the lives of our families, threatened. Ironic.
I know one preemie dad who was followed to work and harassed by a group of angry right-to-life-at-all-costs parents.
Another, a preemie mom, lost her job as a teacher of the disabled thanks to people such as we have been hearing from on this blog.
I could go on...
When such things happen, I hope those of you who like to bully anonymously (you think!) will be aware that we are not powerless.
And, if you are so happy with your child(ren)'s outcomes, perhaps what we have to say is not meant for you. Stick with pablum until you can digest more substantive fare.
You should also know that what I have to say, what Stacy and others have to say, is mainstream ethical thinking, endorsed by the AAP, and ACOG. Are you ready to launch complaints and threats against these organizations?
Helen
Where did that come from? I'm not sure that I have read anyone threating anyone nor have I seen anyone threatening to launch a complaint? WOW..
From Helen Harrison to Nancy who asks about the 6 year level for diagnosing severe handicap:
Here's one of many references: Voss et al. Neurodevelopmental outcome in extremely low birth weight infants: what is the minimum age for reliable developmental prognosis? _Acta Pediatrica_2007;96:342-347.
More to come, if you want it.
But I would wait till later this spring, when "11" may become the new "6"...
Helen
From Helen Harrison
to Kellar's Mommy who asked
"where did that come from":
Read Stacy's post, about the journalist currently being attacked. Maybe you've had nothing to do with that.
But, please note that the point of view that Stacy, I and others (including the journalist in question) advocate, and to which several of you are currently launching complaints, is *identical* to official statements by the major medical associations.
I am simply suggesting that you direct your attack to them, rather than us, if you think you have a case.
Helen
I enjoy reading about Paige and I apologize that my sparse comments usually show up not in response to one of your excellent blog entries but instead to something that HH said that irks me. In reality I have not had to make the life-and-death decisions that others have had to make, and I am grateful for that. I do not know what I would do, and I will not find out because I will not be having more children. I am in no way condemning anyone who has made the decision not to resuscitate. My only "issues" are those that I stated above--I don't doubt HH that you are sincere in your convictions, and that you are tireless in your efforts, but I believe the efforts are misplaced and destructive. I think I've said enough and I really came on again to clarify that I appreciate this blog and my intent isn't to criticize anyone for posting thoughts and feelings and experiences about being a preemie parent.
I did read the article that is being talked about, I myself didn't post about it..I was however offended at the fact that she insinuated that preemie children are born b/c the mother was a druggie, or that these babies use up medicaid and that parents who choose to continue care are playing god..I was not a druggie, never used them, had family members whose life is ruined because of that and it's not something I condone nor do I care to venture there. Kellars bills were covered 2ndary by medicaid, I however was a mother prior to his early delivery that worked, worked since I was 17 years old so if one considers that using up something that I needed then so be it..at least I wasn't a mother who sat on my behind and depended on welfare just b/c I was to lazy to get out and get a job..I don't think that continuing care on a baby born before 26 wks is playing god, as we all know if it is one's time to go it's just that..i know of several preemies who have had medical treatment and there parents were wanting everything done to save their little ones and they still passed away..
So yes I was one who was offended by the authors story, did I send her a email about it, no..do i think it was pretty crappy to basically judge a mother that has had a premature child, yes..
To Kellar's Mommy who said:
"So what I don't agree with your views, I don't and that is that, but can you not get past that I am not of your beliefs for one second ask answer a ? that I genuinely asked with no sarcasm behind it? I do think that a lot of your problems is the hand that you were dealt, you seem bitter to anyone who as of yet has taken a walk down the path you have been. Why be like that, why not be happy for someone whose child has survived prematurity and for the time being is not another number in your statistics findings, is it that hard? Is it jealousy that we don't have that so called burdened life that you are having? I don't mean that ugly,..."
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I'm sorry, but what you have written is largely incoherent. Post it again tomorrow when your mind is clearer, and I will try to answer.
Helen
Helen,
Come on you and I both know that I was referring to your sarcastic remark about why you didn't put Ed in some sort of home..Are you that angry that you have to make the stupidest remarks or comebacks? I was actually trying to understand why you chose to care for your son if it was actually that hard on you, instead of answering you come back with "it's pathetic" that you have to keep answering that ?...talk about incoherent...yes i may make typos i do have a toddler that i am trying to keep off my keyboard, keep him from drooling into my keyboard ( oh that probably just threw up a red flag huh, drooling ) so yes there are times that i may not say exactly what i am meaning to say but anyone can plainly get the point i am trying to make..you always gotta be a smartelic thought don't cha..
ohhhh i said thought instead of though so i guess you wont' get that either...
To Helen, How ironic that you threaten anonymous posters in your rant against those who supposedly threaten you (and I don't care if everyone knows who I am, I am simply too lazy to think up and remember my username and password.
The views I express have nothing to do with statistics or studies or the views of any medical organization -- I think you cherry pick and distort much of what is published and said by neonatologists to support your own biased opinons -- but that is beside the point. My point is that I simply think you are (to put it crudely) messed up.
Helen Harrison to Kellar's mommy who said:
"...talk about incoherent...yes i may make typos i do have a toddler that i am trying to keep off my keyboard, keep him from drooling into my keyboard ( oh that probably just threw up a red flag huh, drooling ) so yes there are times that i may not say exactly what i am meaning to say but anyone can plainly get the point i am trying to make..you always gotta be a smartelic thought don't cha.."
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To "Kellar's Mommy":
Unless you live in Hawaii, it is long past time for you and your toddler to be in bed. Let's resume in the morning.
Helen
Thank you for the article Helen. Although I must admit, I am far to tired at this hour of the evening to read through it and actually be able to comprehend it. I would be interested in reading more about the studies of children once they've entered school age though.
Also, I was just wondering if you could answer the other questions that I asked in my last comment? (those regarding parents having a realistic point of view and your knowledge of neonatology and when it began). I am really trying to understand your point of view.
From Helen Harrison to Anonymous who said:
"I think you cherry pick and distort much of what is published and said by neonatologists to support your own biased opinons -- but that is beside the point. My point is that I simply think you are (to put it crudely) messed up."
***
You've raised some debatable hypotheses, which I'm more than willing to address with you.
But let me suggest that if you are, as you say, too lazy (or, perhaps, cowardly) to remember or print your own name on your posts, you are more messed up than most of the rest of us.
And unless you live in California, Hawaii, Asia or Europe, it's way past your bedtime! Sweet dreams!
Helen Harrison
Helen1144@aol.com
Helen Harrison to Nancy who asked "I was just wondering if you could answer the other questions that I asked in my last comment? (those regarding parents having a realistic point of view and your knowledge of neonatology and when it began). I am really trying to understand your point of view."
I will try to get to this as soon as I can tomorrow, though I'll be out much of the AM. I really want to answer your questions as fully as I can and as soon as I can. They are important.
Till then,
Helen
Did she seriously just tell a 31 year old woman that she needs to be in bed, oh wait it gets better..that my child should be in bed? Oh my gosh I think I have seen it all..My question is why do you want to answer others questions, yet when myself or others ask you something you blow it off with sarcasm? As I have said I was seriously at one point trying to understand where you were coming from, and while yes you did go on to say why you chose this for Ed, you still had to add your flavor of sarcasm in there, that is what I don't understand..Do you like controversy, do you enjoy feeling like you have made another poster look like a fool? That is what I am starting to feel like, like you really could care less if any, well wait some of us understand where you are coming from..Oh and for the record, my child decides when it's time to go to bed around here..
I actually did go to sleep early last night, so am just getting here now. Kellar's mommy, don't even waste your energy...
As for the other group, let me clarify in saying I did not read any threats on the said threads and Stacy's name was NEVER mentioned. I have emailed her and have addressed this with her, but thought it unfair not to defend the truth in this circumstance.
Let me just state that no matter how a person talks about micropreemies or the disabled (because that's really what we are talking about here...is the disabled life worth living?), it is wrong and illegal to threaten people. Thankfully, no one has done that here, at least from what I've read nor on the other group.
23ktwins mommy:
I actually thought Stacy started this thread in response to the mean and hateful things said about the author of the article regarding resus of micropreemies. There were MANY mean, threatening things said about the author, solely because she holds a different opinion than most of the blog moms list readership. And for the record Stephanie, you DID bring Helens name into it in a place where she could not defend herself. Gratuitious mud slinging when someome cannot defend themselves is childish and just another form of stirring the pot!
Sorry Stacy that I was off in my prior comment. Excellent timing nonetheless.
Disagreeing is ok, tearing someone down to make yourself feel better than them, not OK.
What I dont get is why cant be civil and agree to disagree. I love my son. He was born @ 25 weeks. He has issues. Given the same situation I would do the same. It was right for MY family. It is not the right decision in every circumstance. Both sides stop trying to change the others mind and this discussion can become more civil.
Stacy said someone brought her name into it...that never happened. I didn't threaten anyone, nor did I read anyone else threaten. Did they disagree, yes. Were they angry, yes. Is that ok, yes it is.
can someone please tell me where this infamous article/thread lives so I can read and judge for myself?
Oh and I never mentioned Helen's name either. But thanks for the accusations.
It's a member's only group, and should never even have been brought up on this blog. However, I wasn't about to sit and let people accuse me or others of doing things they didn't do. If Stacy had an issue with what was said she should have brought it to the creator of the group or to individuals directly. There are no anonymous posters there so they are accesible.
23wksmommy,
thanks for the info. I wish I was a member of this group as it sounds like there is lots of interesting dialogue.
Stacy - is it possible to block people from posting anonymously?
I used to moderate a board that was even more controversial than this one (you didn't think that was possible, did you?) and we had a name for this. We called it "bitchcraft"... This has really just become a flame war where people nitpick eachother's posts.
At least Godwin's law hasn't come into play yet... http://en.wikipedia.org/wiki/Godwin's_law
Microsmom:
I am sure there are things posted on the members only Narof Yahoo Group regarding some commenters on here. I don't think it would be that strange for Helen's name to come up on a Yahoo Group of micropreemie moms.
I also read through the posts on that group, and although there was much anger at the attitude of the "author" (I use that term loosely), no threats were made. I also don't ever recall seeing Stacy's name or blog mentioned.
Not trying to stir the pot, but what threatening things were said? I didn't read all of the threads on it b/c a lot of repeated itself but I didn't see any threats, again not looking for an argument or anything..
actually no there is NOTHING on NAROF remotely related to bashing of preemie moms.
And while it might not be odd for Helens name to be mentioned, when it is in the context of someone bashing her then it is not appropriate.
Kellars mom:
I didnt say anyone threatened Carly, only that there were some VERY mean and hurtful things said merely because her point of view is different than the list members. Bringing up her son in law as a way to bash her had to be an all time low.
There were MANY mean, threatening things said about the author*****
I'm not sure who wrote it b/c it is anon but this DID say that there were threatening things said about the author, this is the post I was referring to.
someone said that and said stacy and helen's names were mentioned. both not true.
and....i think that bringing her son in law into the picture wasn't out of line, it in *my* opinion shows a lot about her character and what she stands for, which to put it bluntly she backs her son in law who KILLED his child by shaking him..The point they were making was that she feels this way about someone saving a childs life who she felt was better left to die, was born to a crack ridden mother YET she defends someone who took a childs life...her OWN grandchilds at that..
Stacy said she was emailed and was informed that her name was being mentioned, in the ones that I read I never seen her name nor HH's name mentioned, but then again I didn't read ALL of them b/c some of it was very repetitious...
"Bringing up her son in law as a way to bash her had to be an all time low."
I kind of have a hard time relating to this statement. The information is out there on the internet, public domain. One simply has to google a name to come up with this information. If people were googling Caryl's name to find out more information about her, this would come up fairly high on the search engine. (Try it and you will see that it does.)
People were absolutely discussing the article that she wrote. And not only on the preemie blog moms, it was all around preemie forums. Typically when people author an article, they include their name and email link, as Caryl did, knowing full well that they may in fact actually hear from the readers. Most major newspapers have links for readers to email the authors, letters to the editors, etc.
What people choose to include in those letters is completely up to them. How they are perceived and handled by the author, again, is up to the author.
If I were an author and I felt truly threatened by a reader's letter to me, I certainly wouldn't respond to that reader. Nor would I respond to the numerous other letters written with the same tone. Yet Caryl did. And I don't pretent to know why she did it, I can't speak for her. But if it were me, you can bet I would have contacted the proper authorities. So I'm not sure how much I buy into the sentiments that she felt threatened by a bunch of moms writing to her and sharing their grave diapproval of her article.
Most of the letters that were written, people posted on the forum, as well as Caryl's response. And, correct me if I am wrong ladies, I don't think in a single response did she tell the writer that she felt threatened by their letter. It may have been true of other writers. But I think we need to be careful about making blanket statements that everyone writing her was threatening her.
From Helen Harrison to Nancy who wanted to know about my "knowledge of neonatology and when it began."
***
My specific knowledge of neonatology began with my son's birth. However, I also had a science and ethics backgound to help put it in perspective.
My parents, friends, and other family members were/are scientists; several are physicians. My family always had a great interest in ethics, which I remember discussing from the time I learned to talk.
Bioethics and the proper and improper uses of medicine were all parts of our normal dinner table discussions. We discussed how best to allocate scarce resources in medical and societal decision making. For example, do you spend millions of dollars on a few cases of heroic medicine with poor outcomes, or use the same resources to save many thousands with simple treatments resulting in intact lives? The answer to us seemed obvious.
We also spoke often about neurology, brain development, and brain damage. My youngest brother was born (at term) with severe behavioral issues that are very much like those Stacy has described in Paige. Watching my brother develop and seeing his pain was a major influence on us all. My husband, when he joined our family, also came to share our views.
Besides the family background, I was fortunate to have excellent college biology courses that taught me how fetuses develop and how development can go horribly wrong.
My interest in biology eventually led me to consider a career in medicine (after a detour into Russian linguistics), and I began work as a "medic" at a community clinic. I worked under several doctors' licenses and personal supervision. Many of my co-workers at the clinic went on to become physicians, and I was leaning in that direction myself.
As I was considering applying to medical school, I became pregnant with Edward. I contracted food poisoning (Listeria) at about 26-27weeks of gestation.
Entering the NICU, I already understood how knowledgeable people thought about ethical issues. I knew that patients (or their surrogates) could decline treatments, even life-saving treatments that they considered "disproportionate" or having an excessive "burden to benefit" ratio. The Catholic Church, even with its strong anti-abortion stance, has eloquently defined and affirmed these rights.
Patients' and parents' rights (and their routine violation in NICUs), are described in a recent article -- Singh et al. "Resuscitation in the 'Gray Zone' of Viability: Determining Physician Preferences and Predicting Infant Outcomes" 2007;120:519-526.
The authors found that only 1/3 of neonatologists would consider the parents preference in deciding [against] resuscitation of infants at 23-24 weeks gestation. The authors write:
"[In the NICU] patient autonomy, which is considered central to modern bioethical decision-making, is inadequately respected. More than one half of the infants in this gray zone will die, all the survivors will have extended NICU courses marked by expensive, invasive, technological interventions, and almost one half of the survivors will have permanent morbid handicaps. For most other patients (adults or older children) faced with comparable prognoses in other ICUs, their preferences, or those of their surrogates, would be the determining factors in decisions about continuing or withholding intensive intervention. This is apparently not the case in the NICU."
In fact, the only time the parents prevail is when they advocate more aggressive treatment than the doctors want to give. Doctors do tend to honor these requests, especially if the requests are in the financial interests of their hospital (ie, if the parents are well-insured).
When our son was in the NICU, we sooned learned that he had been left severely brain damaged and chronically health-impaired by his prematurity and its treatment. The only question was: how bad would his outcome ultimately be?
The best case scenario, I knew, was an outcome something like my brother's, and I knew how harmful and damaging even such "mild" issues could be.
[BTW, my brother's outcome --which seriously impacts on his ability to live independently -- would not even have registered on a 2-year preemie follow-up evaluation as a "problem." He would have been declared -- as our son wrongly was! -- "normal" or "advanced."]
We just didn't think our son's NICU treatment with its chronic, excruciating, unrelieved pain and inherently damaging nature was worth the agony when all it would lead to was more of the same. All of our family, all of our friends and advisors agreed with us. Most of the doctors and nurses agreed with us.
The knowledge I had going into the NICU, then, was largely a familiarity with bioethical issues. I had been able to discuss them previously with my husband and family. We were all on the same page.
Because of experience with my brother I had a realistic understanding of what brain damage could mean and an informed idea of what to expect (in the event of a "mild" impact).
A good background in biology helped me understand the development of the various organ systems and their inter-relationship to the brain. I understood the hazards of trying to interfere with the processes of normal development. I had a lot to learn...but I knew enough to make a well-informed decision.
***
Currently, the 50% death and severe disability rate (diagnosable by age 2, at least) applies to preemies born at less than 26 weeks gestation.
I advocate decision making power for parents whose fetuses or newborns are in this category.
My own son was born *above* this gestational age, and so would not automatically be considered for decision-making by parents. For this reason, I would say my proposed guidelines (which are identical to those of the AAP and ACOG) are not specifically based on my son.
This doesn't mean all babies over 26 weeks would be treated aggressively no matter what, just that the presumption would be in favor of resuscitation and treatment barring really bad complications.
I hope other prospective parents can come to the NICU with some kind of background in outcomes, bioethical issues and their rights as parents to be surrogate decision makers for their babies. I also hope that neonatologists will begin to let the informed wishes of parents prevail.
Helen
Helen,
Did your NICU simply ignore you and your family's desire not to treat Ed aggressively? Did you take it to the ethics board?
Regarding the article and threats... I just went to one preemie forum that I use to post on quite a bit and there where "threatening" language used in regards to the author. "May lightening strike when she isn't looking." "I would love to take the writer into a dark alley." And while HH was not actually mentioned by name, nor this blog, it was obvious that several of the posters were refering to Helen and this blog. The forum I just checked is not a members only forum. But the thread died sometime last week.
I really enjoy reading this blog, especially the different points of view. I agree with a lot of what is said. I know I have mentioned this before, I believe most of us are actually on the same "side." And that is doing what is best for our families and our kids. And I think we all want families to be an integral part of the decisions that are made in the NICU. If I never got on the internet after having my son, I would think that all NICU's were very family centered - We were lucky.
I appreciate everyone's points-of-view.
Carrie
Helen Harrison
To 23 week twins' mommy:
I'll get back to you on the very complicated story of how our son survived...it's a long and tedious tale, which I've told many times online, but for the time being suffice it to say, it did not involve any division between us and the staff.
***
To switch topics slightly, before this all gets by us, "shaken baby syndrome" has been mentioned.
This is an important issue that *all* preemie parents should be aware of:
Several treatments commonly administered in the NICU -- such as chest PT/postural drainage -- can reportedly cause the same pattern of brain damage as "shaken baby syndrome."
I am aware of several cases in which parents of preemies were falsely accused of abuse, when, in fact, the damage was caused in the NICU, by staff, in the course of "treatment."
I don't know the story behind whatever it is that is being discussed on your other lists and blogs, but keep this in mind: Many preemie parents have been falsely accused of abuse (broken bones -- actually from rickets because of poor NICU nutrition; failure to thrive -- actually from multiple organic causes secondary to NICU care and prematurity; 'cigarette burns' -- actually from heated montitor leads, and on and on.)
If you ever have to take your child to an ER, be *sure* to let them know before any x-rays are taken, before they do an MRI or CT, or even a physical exam, that your child was a preemie! Explain all scars beforehand! Otherwise, you might find yourselves in the cross-hairs of an abuse charge.
And please be very careful before accepting at face value any story that a preemie parent -- or, in fact, any parent of a child who was hospitalized as a neonate -- has abused their child.
Thank you,
Helen
HH
I mentioned the shaken baby, I was referring back to what all went on regarding the author ( if that is what you want to call her ). Someone had mentioned that bringing her son in law into was *low* and I of course felt that it was something rather interesting that he was accused of shaking his child and it resulted in his death...I do make it a point to tell of Kellars preemie history and I had always wondered if they ever had to do a head scan if they would ? it..
May I respectfully suggest that everyone is entitled to their own "gut" opinion.
But we must keep in mind that our gut-feelings are overwhelmingly biased, because we have a bond with our own children. And these topics are personal, hugely personal.
If individuals who are responding here have never done so, I recommend doing some background work in ethics. Ethics is a well-developed field. There are ethical principles upon which decisions can be made when 1) experts differ; 2) those personally involved differ with experts; 3) when the debate is unremitting, and there are sound points on both sides (in other words, it looks like a tie).
Utility. Rights. Duties. Intuition.
Some of the books that I have on ethics expand on these theories, and actually try to provide decision trees . . .
My next suggestion, is to ask oneself what influence religion, law and cultural mores have upon one's viewpoints. Conflicts with ethical principles may arise, if you add this layer.
This will confound your thinking for a while, but it will also cause you to take a step back from the heat of this discussion. And perhaps acknowledge that there is no clear-cut right or wrong.
There is just people, families, parents, trying to figure out where they are and what they need to do in order to do the right thing.
Chris and Vic
Helen, I had never heard you explain the story of your son's survival and had always assumed that you decided not to treat, but the NICU ignored you and your family's choices. That's why I was surprised when you said the Drs and nurses agreed with you. If you've already explained it, no need to go into it if you do not want. I was just curious what your experience with your son's NICU was.
Ah yes, it all comes back to those evil neonatologists, doesn't it? HH I have to thank you because when you come out from behind the data you like to hide behind to reveal your paranoid, cooky thought processes, I realize that going back-and-forth with you I might as well be trying to have a conversation with guy on the subway ranting at me about the devil.
I will call myself "ThePreemieDefender", so you can differentiate my previous anonymous postings from the other anonymous postings that were not from me.
Helen Harrison to Anonymous "TPD" who said
"Ah yes, it all comes back to those evil neonatologists, doesn't it?"
***
What *are* you talking about here?
Helen
From Helen Harrison to 23 week twins mommy who said:
"Helen, I had never heard you explain the story of your son's survival and had always assumed that you decided not to treat, but the NICU ignored you and your family's choices."
***
Check out, among other places, Neonatal Doc's blog threads. I wrote about it at the same time I explained why most very preterm neonates have been damaged as fetuses in utero.
[And, parenthetically, on that topic, there is an interesting study in the most recent British Journal of Obsteterics and Gynecology, showing that pre-eclampsia appears to be caused by infection of the fetus in utero by viruses, especially, the herpes virus.]
I'll see if I can track my post on Edward's near death experience and put it up on this blog. If I can't, I'll compose a new post on the topic soon.
Helen
Helen Harrison to 23 week twins mommy:
Well that was quick! I just found the post. Anyhow, my response is to neo doc concerns the ways decision-making is held hostage to the differing opinions of staff, which parents are not necessarily aware of. Any disagreements or arguments in our case were among the staff and not between us and the staff. At any rate, here's what I wrote to neodoc:
The situation you describe could well have been what occurred when our son Edward was(sort of)taken off the respirator.
Nurses who were there during the early "ethical" discussions concerning our son(which we knew nothing about) have hinted darkly that it was.
Several of these nurses are friends of ours, and to this day I have never asked them for the details of what went on behind the scenes. At this point I don't even want to know.
What I *do* know is that the docs continually misconstrued our wishes, and we constantly misconstrued their intent.
For example, I remember being asked by a doctor while I was still on the delivery table whether or not I "wanted" my baby. (This, after a precipitous delivery in which there was no time for counseling or discussion.) I was shocked at the question, and replied "Of course!" not understanding that this was going to start a chain of aggressive treatment.
What *I* meant was "of course I want this baby! We got pregnant deliberately, and it has been the happiest time of our lives. If I hadn't wanted a baby I wouldn't have become pregnant to begin with!"
My husband and I were both in tears at our son's bedside in the NICU which the staff took to mean we desperately wanted him to live, no matter what.
And we *were* grieving what we had been told was our son's impending death. A neonatologist in charge of our son had bluntly told my husband, on our son's admission to the NICU: "He has 7 (or was it 9?) serious problems, any of which could kill him, but all together, there is no hope."
We were there, we thought, at a death watch, but we also knew that there could be an even more tragic outcome -- our son's severely impaired survival.
We assumed that the neonatologists, who struck us as kind, well-educated people who shared our values (we thought)would not violate the bounds of what(we thought) all decent people considered reasonable and humane.
Days went by. Our son rebounded from crisis to crisis and, with maximal support, was still alive. My mother and I approached one of the neonatologists and told him, "We don't want anything heroic done to keep this baby alive."
The neonatolgist assured us that our son, whose every organ system, it seemed, was being artificially supported, was not being treated "heroically."
I begin to suspect at that point that perhaps we weren't all on the same page.
Then came the conference with the head neonatologist who said our son had suffered a massive brain bleed and the kindest thing to do was let him go... We agreed, tearfully.
However, the doc also told us that he first wanted to wean Edward from the phenobarbital he was being given for seizures. I said that sounded cruel to me since phenobarb was the only half-way *possibly* calming or analgesic drug he had been given throughout this ordeal.
Not to worry, said the neo, "These babies do not feel pain the way you or I would."
Eventually we came to the NICU to hold our baby when(we thought) he would be taken from the vent. What happened instead was that some dials were turned and Ed was put on CPAP, and his numbers didn't look as bad as expected. At some point(again we were not in on this -- after 8 hours we had gone home to cry ourselves to sleep), he was put back on full vent support.
After that, the staff became very upbeat saying things like, "Aren't you glad you live in these miraculous times when babies like your son can be saved?"
I felt like Alice must have felt when she fell down the rabbit hole -- only this wasn't Wonderland, but a circle in hell.
Ed was then vigorously resuscitated through every crisis, and there were many of them over the months that followed.
Our son was put through torture that continues to this day 31 years later. This is *not* what we wanted for him, then or now.
It would have helped immensely if we had been allowed to know about, and be present at, all important discussions concerning our son. The process should have been totally transparent.
I would *very* much like to have heard any differences of opinion among the staff, and I think the staff might have wanted to know how we really felt.
Instead, every one was walking on eggs with us and talking around the real issues. When we tried to tell the docs what we did (or didn't) want, they were not able to hear it.
Based on our experience, and that of so many other parents, I think that these issues need to be discussed by every OB with every pregnant couple, before the time a viable birth becomes possible. Parents should then have the option (if they wish to take it) of preparing an advance directive stating what they do and don't want done in the event of such a birth. At least that would start the discussion.
Yes, it would be disturbing to some parents, but the alternative is much more disturbing, believe me.
To add a poignant post-script to all of this, two years ago I was speaking at a conference and a white haired lady came up to the podium afterwards. She introduced herself as one my son's old neonatologists (I remembered her fondly). She also told me that she had left neonatology for the very reasons I had discussed in my talk. She expressed amazement on learning that Ed was severely disabled (hydrocephalus, MR, CP, severe vision impairment, autism, etc.), since the follow-up clinic had apparently reported back to the NICU that he was doing great!
Folks, we need to start communicating with each other openly and honestly!
Yours for evidence-based, and transparent, medicine and ethics,
Helen Harrison
Helen, thank you so much for sharing that. That was the most relatable, touching thing I've ever read from you. Things truly were barbaric 30 years ago, weren't they?
A relative's son was deprived of oxygen at birth (full-term) and is severely handicapped. The diagnosis is severe CP and severe mental retardation, but the upshot is that at 30+ years old, he's stuck in very early infancy.
The crime, though, was that NO ONE told the mother what had happened, because they didn't want the mom's expectations to limit the child's chances in life. She only found out by accident what all of her doctors knew.
I think that things have come a long, long way since then, but they still have a way to go. Some of us had terrific experiences with awesome, caring, realistic neonatologists and perinatologists. And some of us got screwed.
And, yes, I think we can all (or at least mostly) agree that open communication is best-- both the scary information and the hope. And we can all agree that parents need to be making the choices for their own families. I think it's safe to assume that everyone here LOVES their children passionately. I also suspect that if we stepped back and thought about our positions, for most of us, it's not black and white, but murky gray. Every life, every baby, has inherent value, no matter how disabled, but there are some things are worse than death that we would not want our beloved children to endure. (And here's where open communication comes into play, and a crystal ball would be VERY handy!)
Now, if only we could find a way to talk about these things with each other!
From ThePreemieDefender...
What a horrible ordeal. I am not sure that all the up-front talking would've made the difference, however. It is a situation that is rife with difficulty for everyone. I am sorry you have had to go through so much. It doesn't change how I feel, however.
HH
This is what I have been looking for from you, the curiosity in me was just wanting to know "why", what happened, why does she so strongly feel the way that she does..Hearing first hand puts things so much more into perspective than the statistics, the numbers, the articles that you present when these discussions come up..I am not saying that I totally agree with everything still, and I'm sure that in future discussions there will be things that I feel differently on but I have never felt that the parents should not have a say in what they want...thank you for sharing..
Helen,
Everything I have ever read on preeclampsia is suggestive of the fact that it is a syndrome...a disease that may be triggered by several independent factors that leads to a common situation (compromised placenta).
While I think there is certainly evidence that some cases of preeclampsia might be related to infection, certainly not all or even most would be. In my case, when my PIH reared its head at 24 weeks, I had a herpes test...negative.
A perinatologist followed a hunch at 26 weeks and ran a clotting panel on me. Sure enough, I had homozygous MTHFR and my homocysteine levels were ridiculously high. He said definitely high enough to cause clots in the placenta.
I think I can be relatively sure that you didn't mean to imply that all preeclampsia is caused by infection, right?
Forgot to add...the peri ran pretty much every conceivable test for viruses on me and I tested negative for everything. They did a TORCH and a whole slew of other things. I believe they took...not kidding...13 vials of blood from me at week 26.
To anonymouse TPD who said:
"What a horrible ordeal. I am not sure that all the up-front talking would've made the difference, however."
Two of our son's neonatologists have said otherwise.
Helen
Helen Harrison
to Aidan's mom who said: "I think I can be relatively sure that you didn't mean to imply that all preeclampsia is caused by infection, right?"
***
I don't think anyone knows for sure.
I have only read a brief summary of the study in the New York Times (Science Times). I'm sure you can check out the story online, because I know it was carried elsewhere.
I'll see if I can find something more about it to post here.
Helen
Kathy said, "Things truly were barbaric 30 years ago, weren't they?"
They were just as barbaric if not more so 20 years ago.
While we initially liked the chief neonatologist, it soon became obvious that all conversations were just generalities. We discovered through social services that our son had suffered a massive, grade 4 brain bleed in the first couple days after his delivery. It probably occurred right after birth since a nurse told one of our relatives that she was sure he was having seizures but the docs said he wasn't. Video taken through the NICU window by another relative pretty much confirms the early seizures. We found out accidentally (by overhearing a conversation between a resident and a nurse who did not even know we were the parents) that our son, a 28-weeker, was born "flat" and getting a heartbeat took a very long time despite having been intubated in the delivery room.
We found out through a nurse that our child's "necrotizing enterocolitis," which doctors attributed to a common preemie thing, was really caused when the feeding tube was threaded too far and accidentally punctured his intestine, resulting in infection and major surgery for a temporary colostomy at one week old.
Every time we asked a resident how he was doing, about all we got, was "Oh, time will tell."
They did give us some info when they needed our permission for a surgery. However, we did not initially agree to shunt surgery for hydrocephalus caused by scar tissue that resulted from the brain bleed, because the neurosurgeon would not discuss the pending surgery with us. In fact, she did not return our calls and was never in her office when we tried to see her and did not respond to notes we left on his incubator.
Meanwhile, he had surgery to repair the colostomy, and the surgeon never talked to me until I called him at home!
We checked out other neos at other hospitals, talked with them, toured their NICUs, then hired a lawyer and transferred our child to a different hospital where the neos were very forthcoming. We soon learned everything that was wrong with our baby and what his future might be, which of course, was severely impaired. Even the neurosurgeon who did the shunt surgery, went over his options and what he might or might not do and why. We were finally given a few options and input.
By contrast, we were given no options at his birth as to how far to take treatment should he be born without heartbeat and respiration. While I am very pro-life and would not agree to let a born-breathing preemie at that gestation just die, and while we might have agreed to whatever it took to save him, we should have been told at the initial NICU about how they operated and what to expect. We were there several days before the birth. It could have been discussed. We just had no idea that preemies born that early (50-50 survival chance at the time) were treated so aggressively against all odds. None of the hospitals we knew about in similar cases (and one of our relatives was an NICU nurse in another state) even attempted to save a preemie born under such grave circumstances.
However, my OB-GYN sent me there, because he said it was the best.
These days, I am heartened to read stories about how family-centered some NICUs have become and how parents are allowed input on their preemies' NICU care.
However strongly you may feel about Helen's opinions, and I disagree with her often, I believe it is only because of concerned, activist parents like her, that many of you newer preemie parents had such good NICU experiences. She has certainly brought up a lot of issues (such as preemie pain and the right for parents to be fully informed) that have benefited today's neonates.
Just wish we had known a whole lot more at the time.
BTW, I have also had a sibling who was born full-term with moderate disabilities, and there is generally a big difference between a sick full-term baby and a sick very early or micropreemie. In a full-term baby, the organs are usually fine-tuned and functional, a huge advantage.
From Helen Harrison
To Aidan's Mom:
Here's an excerpt from the article:
Having a Baby: Blood Pressure Troubles Linked to a Virus Infection
By NICHOLAS BAKALAR
Pre-eclampsia, the high blood pressure in pregnancy that can endanger both mother and baby, may be associated with a virus infection of the fetus, an Australian study has found.
Researchers compared 609 normal pregnancies with 717 that had one or more of four adverse outcomes: premature birth, small for gestational age, bleeding during pregnancy or pre-eclampsia.
The scientists tested each baby’s blood within five days of birth for the DNA or RNA of eight different viruses, including five strains of herpes. Virus exposure was associated with all four negative outcomes, but especially highly with pre-eclampsia. Mothers of babies who tested positive for any virus were more than five times as likely to have had pre-eclampsia, and those whose babies tested positive for a herpes virus were almost six times as likely.
The study appears in the March issue of The British Journal of Obstetrics and Gynaecology.
The authors acknowledged that their cases and controls were not matched and that the small number of cases of pre-eclampsia in their sample (23) made it difficult to draw firm conclusions..."
Helen
From Helen Harrison
To anon 4:43:
Sadly, many experiences such the one you had at the first hospital still go on today.
I think no parent should go into a preterm birth situation as powerless, and kept as uninformed, as you and I were.
You are right in saying that this is what I am trying to change.
Thank you for sharing your very difficult experience,
Helen
Thanks for the journal article, Helen.
I think the point I was trying to illustrate was that preeclampsia has many causes. Certainly some are destined to be viral. But there is very solid evidence to support cases or preeclampsia with their origins in poor diet, autoimmune issues, and (in my case) clotting disorders.
I just didn't want anybody else getting the idea that all preeclampsia is linked to viral origins.
Thanks again for the article.
Lori
I just go to a computer now. Helen, thank you so much for sharing your experience. I am so sorry to hear what happened to Ed and your family. It is outrageous that they did not inform you and continued procedure after procedure, denying your rights as parents to be informed and have your opinions listened to and honored.
I know you have stated you have in part helped NICUs to be more family-centered. As I've shared, ours was family-centered to the core. We were informed and involved in everything...from blood transfusions to vent changes to PDA and ROP surgeries, we were informed of it all. We had 4 intense family meetings, where everything was outlined and our positions were explained, accepted, and validated; one neo point blank told me he did not feel it was unethical to end support but also thought we were not yet at the point that it was unethical to continue either...the choice was ours, and they gave us the medical implications that we needed to keep in mind while making the heartwrentching decisions.
So thank you for sharing your story, and thank you for pioneering for NICUs to be the way they should, family-centered and family-empowered.
Helen Harrison
To 23 week twins mommy,
***
Sorry to have fallen silent here, but our daughter is getting married this fall, and I've been off doing mother-of-the bride things.
I have a few more comments to make in this discussion when time permits. Tomorrow or Saturday, perhaps.
Helen
Helen Harrison
to 23 week twins mommy who said:
"It is outrageous that they did not inform you and continued procedure after procedure, denying your rights as parents to be informed and have your opinions listened to and honored."
***
I don't want to leave the impression that we were not informed of procedures. We were physically in the NICU almost all the time (even for rounds), and I don't think the staff was ever trying to exclude us, except, possibly, on a few rare occasions, to spare us emotional pain.
It was just that the staff were operating under assumptions about what we wanted (i.e. everything to keep Ed alive no matter what)and these assumptions were wrong.
We were also acting under assumptions about the staff (that they would not resuscitate or take heroic measures if anything were to go seriously wrong)and, as it turned out, our assumptions about them were also wrong.
After the first passive-aggressive attempt at taking Ed off the ventilator "failed", a decision was apparently made to go "all out" with Ed's treatment. We were never part of any such discussion, if, indeed, such a discussion ever occurred. However, a lot of these things happen not so much by conscious decision as by default, inertia, poor communication, or decisions not properly relayed to the next shift.
We were not treated any worse than other parents are treated in the NICU -- either then or now. In fact, I'd have to say we were treated somewhat better -- after all, we were the only parents in the NICU at that time who consistently showed up and showed an interest.
But there were no more ethics discussions between us and the staff, and we had no way of knowing they were needed.
At one point, Ed's neurosurgeon did inform me, as Ed was being wheeled off for shunt surgery, that Ed's outlook for anything approaching a normal outcome was not good, but the doctor "reassured" me, saying, "Don't worry, there are good institutions for children like this, and if the shunt gets infected, they just won't treat it aggressively."
I'm not easily shocked, but this shocked and appalled me. I wanted to say to the surgeon: "Why are you treating him now, just to let him die horribly later?" But I was too stunned to say anything. Formal, ongoing, ethical discussions would have greatly helped at that particular point.
But we signed all the consent forms for all the surgeries -- even for the anesthesia (which we later learned didn't really mean pain relief).
I should add that I don't think just giving parents consent forms to sign and giving them cursory knowledge of the immediate medical side effects of treatments is nearly enough.
Parents also have to have a full understanding of what their child's degree of prematurity (in and of itself) and the entire course of treatment probably *mean* for the future.
However, very few parents are given information and choices about resuscitation even at the lowest gestations.
I wonder how many parents sign consent forms to have their children put on TPN (which reportedly causes a loss of one IQ point a day for each day the child is on it)?
How many sign consent for steroids which can permanently interfere with normal brain, lung and other organ development, greatly increasing the risk of many diseases and disabilities?
How many sign consent forms to have their child put on a vent(which causes brain and lung damage)?
These, and many other NICU interventions, can cause life-long complications, yet rarely is this information shared with parents.
How many are told that neonatologists still do not know how to properly nourish preemies (and that current methods cause great harm) or that proper oxygen levels are a mystery and that "too much" or "too little" can be disastrous? (but no one knows what level to aim for)
Grade 4 IVH is emphasized (as well it should be!), but there is little, if any, discussion of the other forms of damage to the brain that happen simply as a consequence of prematurity, and which worsen as gestation decreases -- with or without IVH, cystic PVL, or other ultrasound abnormalities.
How many parents, I wonder, leave the NICU thinking(falsely) that their child's clear ultrasound means that all is well? Or that their child's bleed has "resolved" so no damage has occurred?
How many parents are given a full and honest description of the pain of treatment and its permanent effects on their child?
When I hear the many misconception with which parents commonly
leave the NICU, I realize that even the "family-centered" NICUs have a *long* way to go to achieve fully informed and transparent decision-making with families.
The sorts of problems and issues we discuss on TPE should never come as a shock or surprise to new preemie parents. Sadly, more often than not, they do.
Helen
Helen, thank you for your comments. I'm hoping you can elaborate on "false thinking" that clear ultrasounds provide. I am one of the parents who left the NICU thinking all was fine.
"How many parents, I wonder, leave the NICU thinking(falsely) that their child's clear ultrasound means that all is well?"
We were told that clear ultrasounds were very significant and that the opposite can be an indicator of brain damage but that a clear ultrasound was an indicator of a more positive outcome.
Can you please tell the other side of the story...the one you are suggesting I wasn't told by the neos.
Thanks!
Helen
For me I think the shock is the lack of knowledge, or better yet the understanding that there is going to be some degree of noticeable prematurity effects..Though Kellar has done far better than anyone ever expected him to ( except his family of course ) I can still see things that will always be a reminder of his prematurity, whether it be the numerous scars his body still wears, how easily he gets sick with the weather change, how unsteady he is when walking...it goes on and on..but I didn't walk out of the nicu only to be blind sided once we got home..honestly i guess i just never thought of a parent thinking that just b/c their little ones bleed had resolved that they were basically *out of the woods*..but one thing I didn't realize was about the tpn, very interesting..kellar was on tpn for quite some time due to his surgical nec and inability to tolerate feeds..
Thanks for your clarification Helen. I wish there had been an opportunity for you and the neos to have a frank discussion about how you felt about continuing based upon Ed's long term outcomes.
I definitely have a much better sense of your positions, and actually agree with you quite a bit.
Believe it or not I am not a life-at-all costs person. I fully admit my love and desire for my children had a huge impact on my choice to resuscitate and continue treatment. But let me assure you there were limits to what I would consent to, and a grade III or IV IVH happened to be one thing that played a role in continuing or not. I also knew they were in pain, especially Edwin on the osciallator, and I had made up my mind to end treatment simply based on the fact that he was failing respiratory wise and it was painful to be on that machine. My family was up from Florida and I decided to give him the weekend, and give us all the weekend to say our goodbyes. We created a plan that he would not be increased on his vent settings and we'd wean every day, if he didn't tolerate it, we would take him off life support. I couldn't watch him shake on that osciallator anymore.
Had either Serena or Edwin had seizures while heavily ventilated this would have also been a cause to end support. Contracting NEC probably as well. Because they were barely stable without all of these things, adding any one of them would have created a situation where I felt enough was enough.
I think the reason I have the views I have is because I was prepared, in part by reading here and other blogs, for a life with two special needs children. I have never believed life would be "normal." I have read about many micropreemies who have a lot of health issues and it really does break my heart to know they suffer. We have a long road ahead, but there is a lot I am thankful for. We still have school which will give us a sense of S&E's IQ, possible learning and behavioral problems, and obviously as they get older a sense of whether they will live independently or with us.
I wish with every ounce of my being that they could have been born at term. I ruminate about it sometimes because it does hurt to know my children were robbed of a whole hell of a lot...and that we were too. But I don't wish they didn't make it, I can see how that might be different if they were struggling or in pain daily. I can accept the fact that they may have learning and behavioral issues, it would be much harder if I was facing a future of their constant physical pain. I'd still love them and be thankful for the good times, but I would hurt deeply to know they were suffering.
I just want to clarify that the decision to end treatment should those other issues have arisen is because of how unstable my particular children were while vented. Because of their extreme prematurity and extremely underdeveloped lungs, they had a much more difficult time tolerating much of anything.
And I fully admit it is much easier to say what I would have done now, not having to go through with it. I personally believe the same is true for the surveyed neos who say they wouldn't resuscitate. It is certainly one thing to say it and another to go through with it.
And this is a little off topic, but what are your (Helen, or anyone else's) views on the March of Dimes? My number one reason in supporting them is to fund research to find out what can be done to stop prematurity...i.e. how do we prevent/treat infection, etc. Do you think they put enough dollars toward this type of research?
Re: views on the March of Dimes. .
It is difficult for me to support them when they are only putting the best face on prematurity at this point. They are part of the reason there is such a misconception about the long-term impacts of prematurity.
About 10 years ago, part of their campaign (of blame)
showed full page ads in major magazines of a very preterm footprint, next to a large fullterm footprint. All that was said was "Guess which mother smoked while she was pregnant?"
And although they claim to be supporting research, just how much of the dollars generated are actually going toward this?
When the March of Dimes started, it was designed to support families who were affected by polio. I know a retired Physical Therapist who had her college education paid by the MOD so that she would become a PT and work with the many polio survivors.
What family or therapist or anyone really sees any of the money generated from the March of Dimes THESE days?
Stephanie
***and a grade III or IV IVH happened to be one thing that played a role in continuing or not***
What was it about the higher grades of ivh that possibly would have led to your limit of treatment?
From Helen Harrison to
Anon 5:56 who said:
"We were told that clear ultrasounds were very significant and that the opposite can be an indicator of brain damage but that a clear ultrasound was an indicator of a more positive outcome.
Can you please tell the other side of the story...the one you are suggesting I wasn't told by the neos."
***
Yes, when time permits, I would like to talk about this in *great* detail. But, for the time being...
What you were told was partially true but...
did they also tell you that at least half of all preemies with CP have "clear" scans in the NICU?
A clear scan, though better than a scan showing overt damage detectable on ultrasound, is not a guarantee of much of anything.
MRI scans, which are superior to ultrasound, have been showing what "clear" ultrasounds fail to distinguish: diffuse PVL (widespread, pinpoint areas of brain tissue damage and atrophy)and abnormalities in overall brain growth.
Preemies, even without IVH or cystic PVL have been found to have: significant reductions in size of the basal ganglia, hippocampus, amygdala, corpus callosum, and cerebellum.
Cortical volumes are smaller in the sensori-motor areas, premotor cortex, midtemporal, perieto-occipital, and subgenual cotices.
What this means in real life is cognitive, psychiatric, motor and sensory problems.
A very good way to learn about these structures and areas of the brain, and their importance, is with the excellent Teaching Company DVD course on the brain by Dr. Jeanette Norden at Vanderbilt (and, no, I don't get a kickback). Go to
www.teach12.com
and check it out.
Neurons are reduced in number and in their connections in preemies. They also fail to migrate to the cortex in a normal pattern because of the disruption of preterm birth.
Recent MRI studies from Yale using a special MRI technique that charts the "microstructure" of the brain shows that: "preterm birth [at age 12 years] results in significant long-term, cerebral microstructural changes in children with no known evidence of intraventricular hemorrhage or cystic white matter damage [PVL] injury in the newborn period." [Pediatrics 2008;121:306-316]
Our children are going to grow up to be very different, and this is why.
More to come...
Helen
I will say that had Kellar not had a mri prior to his nicu discharge, we would have never knew that he had a cerebellum bleed..we found on out day 2 day that he had bilateral grade 3 ivh and basically were told we needed to take lunch and discuss our options, for us there was no need for discussion but i won't go into that as most know my feelings on this..when we were told of the cerebellum bleed i immediately wanted to know what this meant, what would it effect and suprisingly we were told that there really isn't a lot of studys done b/c until recently doing a mri before discharged wasn't a common practice..he said that there is probably quite a few parents that left the nicu thinking there child had no brain damage and in reality there is very much a chance that there was cerebellum damage that of course wasn't detected on just a head u/s..i have found very little on preemies with cerebellum bleed..if you google it now kellars website gets a hit as well as a few others blogs i frequent..
i guess i should add when i was searching i was looking for other preemie stories..i do know if you google cerebellum bleed in infants you get all sorts of links, but i was looking ( in desperation ) for other *real life* stories..hh i actually found something you wrote under cerebellum bleeds in infants..
The higher bleeds had an impact because they could have possibly led to hydrocephalus or seizures. I know not in all cases, but it was something to watch closely. I would not have consented to shunt surgery, nor would they have been able to perform it because of the degree of ventilation and their size, (although a bleed can occur at any time they mainly happen within the first few weeks, at this point both were vented and not always stable and they weighed between 14 ounces and 1 and 1/2 pounds.) I can't say I would have ended support right away with a grade III or IV, but it would have impacted our thinking process because it was hard enough seeing them (mostly Edwin) unstable day after day. Like I mentioned, we were already uncomfortable with continuing to treat beyond week 4 (we ultimately decided we wanted to give him the weekend and this is when we consented to steroids and decided to see what he did with the wean plan. For that weekend we made him a DNR, the hardest thing I have ever had to consent to, but he was struggling and in pain, and I was not having anyone inject drugs into his veins to restart his heart. I didn't want to bring him back to that life. If he was trying to die, I told him it was ok and he could.) Additionally, he needed PDA surgery and I would not consent to it, nor could they do it unless he came off the osciallator. I personally did not want him to die in surgery. It looked like we were losing him before we started the steroids (I know they have scary side effects) so I made it clear he would pass in our arms and not on an operating table.
That's why I wanted to clarify. I do not want to insult any parent who consented to shunt surgery or kept treating with a large bleed, just in our case their survival was already so uncertain, adding another factor that could have meant the need for brain surgery or seizures while so unstable just didn't seem right to us. Not to mention they told us they didn't do shunt surgery on babies as small as S&E so we would have had to wait for them to grow while they continued bleeding in their brains. Even without hydrocephalus, the bleeding could have led to more "fluid" on board which was already a problem because of their lung disease.
And the most difficult part is the fact that although you really don't know the impact, one thing that was made clear was the effect a large bleed can have on a child's life. Although I fully accepted parenting two special needs children, I also wanted to protect, as much as I could, their brains. That's why should they have had a large bleed speaking with the neurologist would have been vital to our decision making. If it was found that there was massive damage that would have meant possible lifelong seizures or painful shunt revisions from hydrocephalus I would not have consented to that. Like I mentioned, I have less of an issue parenting a child with mental retardation, learning problems, behavior issues, and the other unknowns, but would have a harder time consenting to something that would mean a lifetime of physical pain. And remember at this time they were already on quite a bit of life support and their survival was uncertain. Ending support without the large bleeds was already an option for our family, so to add those extra pieces in with their possible negative impact on their already declining health was not something I would have wanted for them.
So I am saying these things in the context of where I was at the time. What choices we talked about as a family and with the neonatologists. An experience that differed from Helen's, and I think it was wrong for her not to be able to have had these discussions, although I understand the miscommunication piece I wish the neos had reached out to her in that difficult time and talked about implications of treatment and of what Ed was dealing with medically. Knowing my children now it's MUCH harder to say I would have ended support because I truly can't imagine life without them. But the point I'm making is I'm not a life-at-all costs person. Because of how critically ill S&E were, there was a limit to how far I would have gone in treating them.
I am forever thankful that *in my opinion* they were meant to be here. I know that might sound ridiculous to some because obviously they came way too early and were clinging to life, but I really tried to do everything I felt was ethically possible medically and listen to what they were telling me. I literally had conversations in silence "with" them and told them how much I loved and wanted them, but told them if it was too much that they could stop fighting. Those were the most painful and difficult times of my life but I tried to make the best choices for their sake.
Oh, and one more thing. Helen I know you were in the hospital and were aware of Ed's medical condition and procedures, I just meant I wish the neos had reached out to you and explained what was going on, and said, "these are the implications", "how do you feel about treating in this way when the possible effects are x,y,z?" To have the neurosurgeon say that to you on the way down to shunt surgery was not informed consent.
During our second family meeting the neo was a little less optimistic than the first. He mistakenly said "I know you want everything done BUT..." I said "no you're mistaken. Yes we WANT our children but we want to ask you some questions to help us come up with a plan for Edwin." Like Helen's experience, because we were there all the time and cried over their bedsides and were extremely involved and asked to sleep over every night, it was assumed we wanted all out measures taken. This assumption should not be made, but instead there should be opportunities to talk openly and honestly about your child/ren's care.
I appreciated when this neo told me that continuing to treat Edwin was most likely "prolonging the inevitable" because he was being honest (as much as it hurt to hear it) and it helped us set up standards of care that in our opinion were fair to Edwin. I didn't know anything about CO2, BPD, chest x rays, desatting, etc before this. I needed him to tell me in his medical opinion want was going on, what we could do about it, and what it meant for EJ's future.
Although I am not completely comfortable with not resuscitating at such and such gestation, I am completely for informed consent to end care. There are 29 weekers who are much "sicker" than a 23 weeker and IMO there should be parental consent related to how far you want to go and how long treatment should continue based on the individual child and the parent's feelings.
Helen Harrison
To kellar's mommy who wrote:
"when we were told of the cerebellum bleed i immediately wanted to know what this meant, what would it effect and suprisingly we were told that there really isn't a lot of studys done b/c until recently doing a mri before discharged wasn't a common practice..he said that there is probably quite a few parents that left the nicu thinking there child had no brain damage and in reality there is very much a chance that there was cerebellum damage that of course wasn't detected on just a head u/s..i have found very little on preemies with cerebellum bleed."
***
The doctor could have told you a great deal more than he did, especially since he already knew that many preemies leave the NICU with "clear ultrasounds" but have had cerebellar bleeds (and/or atrophy). The studies (and they date back to the 1970s)that have found this have also contained good information about what this damage means.
Half of all the brain's neurons are packed into the cerebellum, and it is a very critical brain structure for every human function. It is heavily implicated in motor and coordination skills, language issues, coordination of sensory input, and in ADDH/autism and other behavioral disorders.
I have a number of studies on the cerebellum that I can send out to anyone who wants them -- post me at Helen1144@aol.com.
In addition, I believe there is a fairly recent thread on this blog having to do with the cerebellum and autism in preemies.
I really can't stress enough the value of beginning with some good basic information on the brain and brain structures -- such as the excellent course by Jeanette Norden at the Teaching Company, who devotes an entire lecture to coordination of movement/behavior and the cerebellum.
Helen
HH
We took Kellar to a pedi neurologist when we came home from the nicu b/c he had a very noticeable hand/head tremor when he was trying to reach for a toy is when it was most noticeable..The neuro looked at Kellars mri report as well as his u/s reports and said that he felt that the older Kellar got and the more he put his hands to use that it would get better, and as of now it's gone all together..He felt that Kellar would do anything he put his mind to, he did say that Kellar would probably never be an artist by far..I know it's still early, I have brought up autism w/our therapist just in talking and none feel that it's going to be an issue with kellar..now as far as his attention span right now, it's pretty short but I'm hoping it's just his age right now, nothing wrong with holding out a little bit of hope right..Thank you for sharing!!
From Helen Harrison
To Kellar's Mommy:
The tremors you mention sound like they *might* be indicative of cerebellar injury.
Here is Dr. Jeanette Norden speaking about what are called "intention tremors:"
"...as the person comes to the end of a skilled motor movement...as they get closer and closer they are unable to stop a tremor or movement of their arm or hand...so if they have a cup... in their hand, the gross movement might be all right as they bring it to their face, but as they get very close to their mouth the cup starts moving and of course people [can]injure themselves. We call it an intention tremor, because the movement gets worse as you try to make an intentional movement."
***
Now babies sometimes also make what look a bit (to me) like intention tremors that (usually) they get over as development progresses, so it can be hard to tell what is going on in the beginning.
I think it is useful, in trying to determine if what your child is doing is normal or not, to look at your child along side a full term child of a similar gestational age. Are their attempts to move a cup to the mouth different? How so?
Then wait about six months and compare again.
By age two, you should have some answers, or, at least, some further questions.
Helen
Helen,
I was wondering if you could share when you as a parent noticed things that were different with Ed. You have said NICU follow-up thought he was doing great. You also mentioned he could read by age 3 (this is not typical...did it concern you?). You say he has mild CP, was there anything about his early development that clued you into this? What about his autism?
I find it concerning that the developmental doctors would have missed out on everything, I would have guessed that mild CP would be evident by the time he was walking, playing, etc. Did you believe NICU follow up, or did your maternal instincts tell you different?
HH
Kellars tremors are gone, he drinks just like other kiddos now, grabs toys with no shaking or tremoring..The neuro did feel that it was the cerebellum injury and that the more he used his hands and the older he got it would work itself out, but his words were "practice will make near perfect"..
23 weeks mommy wrote:
"You say he has mild CP, was there anything about his early development that clued you into this? What about his autism?
I find it concerning that the developmental doctors would have missed out on everything".
The preemies who are not diagnosed with CP are often given the Developmental Coordination Disorder diagnosis. It has been suggested - that DCD is the mild end of the CP spectrum.
At the age of 9 - I took my son to an OT for an eval - after learning about OT for preemies on a preemie internet list. This was about 2001. I learned about the preemie lists from picking up the book Baby ER at my local library.
The preemie internet site I found was the first place that validated our experience, defined the problems and sent me in the right direction for help.
Knowledge is power and that was the first place I was given any - although I had read, searched, talked to physicians, talked to educators, school counselors, other parents over the years.
My son was given a DCD dx at the age of 9 - the first time we saw a developmental ped. He had complaints of joint pains since he could speak. He has dysgraphia, hypotonia, abnormal gait, joint laxity observed by an OT when he was 9.
Over the years, since toddler days, I brought up his joint pains to his ped. I was given the "growing pains" explanation. At about the age of 9 - they did xrays and sent me to a world renowned ortho - again at a world renowned Children's Hospital. He took one glance at my son - who was wearing very baggy pants, did no other assessment and said to me: "He has tibial torsion. You're the sixth mother today who brought her child in today for tibial torsion."
He then started dictating his report at a mile a minute into his little tape machine.
When he started talking about my son's birth experience into his tape machine - as if we weren't there - I asked him to please stop - as he was giving some information my son had never heard before.
Lucky I read online that other preemie parents took their kid to OT's and PT's - which I found out when my son was 9 - when we had a computer and after I found the preemie list. It was at the age of 13 my son had an eval by a pediatric physical therapist who found some "significant gross motor delays".
When I again mentioned the joint pains to his pediatrician (also from a world renowned Children's Hospital) along with the assessment by the PT - he said:
"Did anyone ever tell you that the joint pains can be related to the hypotonia?"
Gee doc, YOU didn't!
Knowledge is power and I have Helen Harrison to thank for the bulk of it - for the endless supply of medical research she provides - research I would not have heard about from any other source.
Although the following resources re not specifically on CP, they are resources for early development:
http://www.icdl.com/
and
http://www.stanleygreenspan.com/
And although there may be a response to my post that it is sad this happened to me, and that things are different now - I beleive my case is more of the norm than out of the norm and that the systems that are meant to support and educate us are failing far more than they are helping.
I recently worked in a kindergarten and saw a MULTITUDE - a large percentage of children I call NYD's - "not yet diagnosed" and struggling with issues that seemed blatant to me. I heard teachers blame mom, label the child.
It goes on and on...
Joan
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