Wednesday, November 7, 2007

So Many Good Points

So often, there are many wonderful, thought provoking points that are made in the comments section on my blog. My fear is that they get missed.

I would like to bring forward some of the ones that were left on the post titled, "Dear Dr. Anwar".

These are not in any order. And, please know that I honestly felt there were many good points, not just the ones listed below. (Hopefully you can read them. Blogger seems to want to squish my words together, despite me telling it not to.)

I am starting with Chris's comment because I feel that she sums up my feelings and, as always, it is beautifully written.

Chris wrote:
"When I read all the comments, it gives me a "solemn" feeling. I have read such give-and-take before on this blog and on others, such as Neonatal Doc's, and have regarded it as "spirited debate". This time, however, I see and hear and feel that we are asking one another for tolerance." and "And we are asking one another for tolerance, each for her own perspective. It is solemn to me, even spiritual. Please, let us give one another this great gift."

I have seen a change in the comments section of this past post, compared to others. Many people were stating their points and then, after reading others comments, making a great effort to understand where the other person was coming from. Seriously folks, call me hormonal, but it was beautiful. I thank you for it too.

23wktwins'mommy wrote:
"I just don't want parents who opted to resuscitate feel that they loved their child less because they chose to give them a shot rather than save them from NICU and possible long term pain. I can see how a family who had seen a suffering child not want that for their own. The tough part is there is a spectrum, and some children have *better* outcomes than others. Living with either decision can be difficult, I'm sure."

Tammy wrote:
"I did feel guilty during the NICU for wanting him to live despite any future statistical outcome. I now know that there are no guarantees when it comes to the future. I don’t think doctors can list all possible outcomes but I think they should give you the facts. I wish premature births, especially micro-preemies cases were followed better. I definitely wish doctors (other specialists) beyond the NICU were more knowledgeable about prematurity. The public needs to know more."
I too felt guilty when Paige was in the NICU. It was our decision that put her there. But, over the years I have learned to let that guilt go. That's my wish for new preemie parents who are 2nd guessing their decision... let it go.


Terri w/2 wrote:
"I will never, ever waiver from believing that this decision was THE RIGHT ONE, and the neonatologist's decision to over-ride our decision was absolutely the WRONG one."

Anonymous (11/5 at 8:31) wrote:
"I had a note in my chart not to resuscitate before 26 weeks. My husband and I quickly changed our minds when I was in the delivery room at 24.1 weeks. Our doctor kept reminding us of our previous request but we demanded our daughter be resuscitated."



"In the end, we each make our decision and make our peace with that decision. But we should stop judging the decisions made by others especially if they differ with the ones we might have made."
and
"It is unclear to me why my choice must threaten someone who has made a different choice, unless they believe things would be better if we all made the same choices. One can read Orwell's 1984 and see what that kind of world looks like."
Kim's last statement echos my feelings. Why are we so threatened when someone makes a different choice than ours?
And finally...

Helen Harrison wrote:
"We need to take our heads out of the sand, and begin speaking out whenever the media or others try to gloss over, or misrepresent, the realities of preterm birth and its consequences. "

Yes! Yes! Yes! We are never going to be a society in which we can make decisions based on informed consent if we are never informed!

83 comments:

buddhist mama said...

Just wanted to say, oops, I commented under the Dr. Anwar post rather than here, because my comments refer to that conversation. Readers, check that out, the comments seem to keep coming in on that post.

buddhist mama said...

I'd like to elaborate on the comments I made at tail end of the Dr. Anwar post, in light of the new post on tolerance. Why do I feel it is important to point out that one third of the four million women giving birth in the US annually are single mothers? And why mention that some are not just the teens or working class moms, but that some are single mother's by choice---who are using the new reproductive technologies to have babies? Because I want to remind us of the variety of circumstances and experiences out there that frame our choices and so desperately call out for tolerance.

And it angers me when we see Neos and Fertility doctors acting on their assumptions about what is best for a family (or best for their NICU, best for their fertility clinic) and then leave us, the parents to pick up the pieces. Indeed, it is the lack of appreciation of diversity of experiences and moral choices that adds to the suffering of others.

I am upset at the fertility doctor who assures a woman that it is perfectly safe to implant 5 embyros, and leaves her to deal with the results of that choice, to deal with the long term effects of raising quads or triplets with limited medical care, as well as the neonatology staff that may have assured the mother that 'everything will be fine' in the long run, but does not have to stick around to see that long run in action.

We live with an administration that is ever more eager to dictate moral decisions to individuals about end and beginning of life, but ever more reluctant to act in ways that I would define as truly moral--namely support those who are suffer from illness, disability, poverty, and other circumstances that are largely beyond their control and hardly their 'fault'.

It is this intolerance that most bothers me.

terri w/2 said...

Buddhist Mama - WELL SAID!

I too, am amazed at the "Republican mentality" - those that are so eager to save, save, save - Baby Doe Laws, namely, but the fiasco surrounding Terry Schaivo, as well as the Born Alive Act. C'mon! Where are the resources suppose to come from to support all that they want - no DEMAND be saved? The many challenges to social services, health care systems, special education, families - particularly mothers, as a result of their need to be on some moral high horse, is nothing short of hypocritical.

23wktwins'mommy said...

First, please read my comment at the end of the Dr. Anwar post, I never said it was not Christian or irreligious to not resuscitate...the entire point of that comment was missed...unbelievable.

Anyway...
I'm glad we are having these conversations. Over the past week I have begun to have an understanding about the choice opposite of my own. Previously, I could not really understand how a parent could opt not to save their living baby when the technology exists to do so. Especially at 25.something gestation, which I know of three babies born at this gestation who barely spent time on a ventilator, one didn't spend even 24 hours vented. Who knows how long that family would've held their baby before he/she died...it was a hard thing for me to grasp.

Having read the comments and having spoken to our 2 private duty nurses, I understand more about a parent's motivation behind not resuscitating. Although neither nurse has worked with 23 weekers before, they have worked with children who have severe medical and special needs, (many not preemies, but those with genetic disorders and birth defects), one even worked in a medical institution years ago. Hearing about the multiple seizures, shunt revisions, severe spasticity, etc. helped me understand why a parent would chose not to resuscitate their preemie...fear their child would suffer in similar ways.

Even though I didn't fully understand a parent's motivation to opt not to give their child a chance at life previously, I have always been supportive of informed consent and the decision to end support and initiate comfort care if a family chose this was best for their baby. I believe in frequent, honest conversations between families and the NICU team.

So when it comes to me, there is more understanding and less judging about parents who opt not to resuscitate because of this blog and my honest conversations with those who have seen the issues that I have not seen in my own children.

What hasn't changed is my immense respect and admiration for families who, in spite of the knowledge that long term issues are likely yet quite variable, still make that commitment to give their child a chance at life and stick by their child throughout life. They sacrifice their original plans in life, a "normal" experience at parenting, and perhaps even their desire to have more children for fear of another early delivery or because their child has needs that consume nearly all of their time. They love their child even though they may look, act, and respond differently. They hurt because their child may hurt but they don't regret their decisions, because they didn't know what the future held and they vowed to love and care for their child no matter what. And for those who opted to give these preemies a life when their biological parents walked away, I am greatly humbled by them.

Making the decision to end life support is a devastating one. I spent countless hours screaming in tears into my pillow at night about how unfair it was that my children were born so soon and whose lives were slipping away even with life supporting technology. I had the ability to see that my son's lungs were failing, that he was suffering, and had the knowledge that if something didn't change quickly he would die. In that sense, it made it easier, not easy in the least, but easiER to make a decision to end care if he didn't improve over the weekend. I can't quite imagine the pain and anguish a family endures when they do not attempt resuscitation. Are they left with the "what if" feeling that I had the ability not to have to deal with? The uncertainty of what your life would have been like had you opted to resuscitate at a gestation that is routinely resuscitated would haunt me forever. It's not to say it isn't the right decision for a family, but like I have to live with my decision to resuscitate forever, that decision lives with a family forever as well. Like someone commented earlier, you may have made a decision about what you would do, but when the time comes and you are in labor with your baby who is "viable" it may be difficult to stick with your original plan. I have yet to hear from a mother who actually chose not to resuscitate, minus the mom of the 22.5 weeker. Not to minimize her experience, but at many hospitals including the one S&E were born at, she would not have had the choice to resuscitate at this gestation. 22 weeks is not a routinely resuscitated gestational age; and the reason I bring this point up is because I have yet to find much, if any, detailed information on surviving 22 weekers. I have yet to find one blog featuring a surviving 22 weeker, but have found a few 23 weekers and many blogs featuring 24, 25, 26, 27, etc. I've read one mom's comments and she was told her 23 week twins didn't have a chance by the neonatologist and she wasn't given a choice. But I've yet to hear from a parent who gave birth to a routinely resuscitated gestational age baby and CHOSE not to resuscitate. I've shared my choice at length, and the implications of that choice are featured on my blog in almost daily posts. I'd like to hear from someone who made the opposite choice.

terri w/2 said...

23 WTM - It is interesting that you were willing to listen to your nurses' account of what life is like for many of our severely disabled preemies, but you haven't been willing to listen (up until this point at least) to other parents' accounts. .

The tone of your above message still leaves something to be desired. . as if parents who "choose life" are to be respected, but those of us who would have opted other choices but have still hung in there caring for and loving our children despite their many severe issues are not deserving of that respect?
This continues to seem quite judgemental.

Helen Harrison said...

To 23 wtm who said:

"I've yet to hear from a parent who gave birth to a routinely resuscitated gestational age baby and CHOSE not to resuscitate."

I personally know, and have heard from, many such parents. Some of them post on this blog.

They tend to have been well-informed (prior to delivery) about the serious medical issues involved in the resuscitation, treatment, and outcomes of extremely premature infants. Often they are doctors or nurses themselves -- several have worked in premature infant follow-up.

They are, with very few exceptions, quite comfortable with their choices. Formal research shows the same thing (Carolyn Daniel's work at McMaster in Ontario comes to mind.)

To quote neonatologist Joseph Kaempf (one of the good guys, IMO), who wrote in Pediatrics:

"My experience counseling families in high morbidity situations, whether it be a threatened 24-week delivery or a baby with severe intraventricular hemorrhage, is that few of them want to take the chance of having a brain-damaged baby. Furthermore, those families that have received factual, unbiased counseling and have chosen to forego intensive care support for their high risk infant have felt overwhelmingly that their decision was the correct one."

I think you, 23wtm, do not hear from these parents because they have already considered and rejected the point of view you seem to espouse. They may also find your relatively brief experience with your children, and your current view of their outcomes, as not being meaningful to them.

Another point missing from your discussion is any acknowledgment that what constitutes "a routinely resuscitated gestation" differs from one country to the next, one hospital to the next, and from one doctor to the next (and may be based on financial and research agendas.)

Not all that *might* be done, can realistically or humanely be done, and there is great medical debate -- informed by recent very poor follow-up results and several recent iatrogenic disasters -- about the wisdom of routine resuscitation <26 weeks. And the questions are not limited to <26-weekers.

You express your "immense respect and admiration for families who, in spite of the knowledge that long term issues are likely yet quite variable, still make that commitment to give their child a chance at life and stick by their child throughout life. They sacrifice their original plans in life, a "normal" experience at parenting, and perhaps even their desire to have more children for fear of another early delivery or because their child has needs that consume nearly all of their time. They love their child even though they may look, act, and respond differently."

But do you also respect parents who *knew* from the outset that life was going to be unacceptably difficult and painful for them and their child; who chose against resuscitation but were overruled; who were left with a damaged child, but who stood by that child for life nonetheless?

Do you respect those experienced parents when they try to inform prospective parents of their rights to refuse a similar course?

And how do you feel about the situations in which parents who insisted everything be done, who tried to put a good face on poor outcomes, who paraded their parental "heroism", but who finally cracked under the strain and abandoned their child? The Kelso case comes to mind, and there are so many others.

I hope you will consider these situations and perspectives as you try to develop greater understanding of others who chose a different path.

Anonymous said...

The Morrison Sextuplets delivered at 22 weeks but I have no idea how many days. They had a blog but it's since been taken down. They rarely updated it after the birth of the babies unless they were posting about a passing. A friend sometimes updates on the one surviving sextuplet on her site but hasn't in a while. Her last post about him said he was still in the hospital but doing well. So I don't know of any 22 week blogs either. There was so much media coverage around the birth but nothing now. Wonder why? Well, we all know.

23wktwins'mommy said...

Terri w/ 2...why wouldn't I be willing to listen to the nurses accounts of severely disabled children? I work with children with various physiological and emotional issues. I'm not in denial that these children exist, nor do I believe that we shouldn't hear their stories and feel empathy for them and their families. And I have always been willing to listen how life is for your preemies, but might not agree with the tone or some of the wording that is used to describe disabled children and preemies. I am coming to a place where I understand why parents don't resuscitate, but that doesn't mean I agree that we call these children 'damaged fetuses who nature meant to abort' (rough translation from a previous comment on this blog.)I have never tried to hide the fact that preemies have significant medical and special needs and have never thought that people shouldn't share their experiences. Look at my blog roll, do I only have preemies there that are unaffected? No, first off, that doesn't exist, they are all affected. And I read, care, and am interested in every single one of them regardless of their diagnoses. So I don't know why you were surprised.

I respect any parent who sticks by their child. And yes, I respect parents who continue to care for their medically needy child even when they wanted the NICU to stop treating, and unfortunately they were ignored. It's not being judgmental that I point out that I have respect for people who make certain choices. I am understanding WHY people make choices and think people are entitled to their choices, it doesn't mean I agree with those choices or would chose that for myself. These are *my* opinions and I think I am entitled to them.
And no I don't respect parents who "paraded" their heroism and then cracked under the pressure. I don't respect people who abandon or harm their children.

Helen, you have heard from parents who have made this choice, all I'm saying is I would like to hear about their choice and how they feel about it. You say "I" might not have heard from them because:

"...they have already considered and rejected the point of view you seem to espouse. They may also find your relatively brief experience with your children, and your current view of their outcomes, as not being meaningful to them."

Those who share on this blog talk about what they "would" do, I'm just waiting to hear from those who "have" done it. Why does my children's age have anything to do with the lack of input from parents who opted not to resuscitate? Why should they NOT talk about their choice because of how they think *I* feel about the topic? The fact that so many here have stated that they WOULDN'T resuscitate at 23 weeks doesn't stop *me* from chiming in. So if at 13 1/2 months of life their outcome isn't meaningful to someone, then I really don't care. It's meaningful to me and those who love them and those who frequently check my blog. Those who aren't interested don't need to worry about how my kids are doing when they are sharing their experience on their choice not to resuscitate. So don't worry about my feelings on resuscitation and don't worry about my 13 1/2 month old's meaningless development...please share.

And as far as gestational age:
You yourself list countless studies Helen, and you know as well as I do that when we are talking about routinely resuscitated babies it's 23 weeks, minimum. Why does that even matter? If there are SO many people who opt not to resuscitate, then I'd like to hear their experience. And again I said why gestational age was significant...there are NO blogs about 22 weekers. There is NO concrete follow up that I can find on 22 weekers, so what one NICU does in this country or any other doesn't interest me with respect to this point. I want to hear from those who opted not to resuscitate at 23 or >. Those who can read the statistics, those who can read blogs of surviving micro preemies.

I can understand why parents make the choices they do. I understand many people do not want to care for a child who has medical and special needs. I know they worry their child will experience suffering. But I also believe there is a place in this world for those with special needs and I know that I would have missed out on the best things in my life had a made a different choice.

Helen Harrison said...

To 23wtm:

You say: "I'm just waiting to hear from those who "have" done it."

Done what? Not resuscitated at <26 weeks weeks? Yes, people who have requested these things and had their wishes honored (or more often, not honored) have posted on this blog.

Not resuscitating <26 weeks happens almost every day -- at least at some hospitals in the US.

I doubt that parents who have made such decisions would feel welcome posting on your blog, however.

You say: "Why does my children's age have anything to do with the lack of input from parents who opted not to resuscitate?"

Informed parents aren't going to seek you out as an example of "doing great" after 23 weeks survival, because they know that at age 9 months corrected it is impossible to know about many of the very serious outcomes of prematurity. Your input at this stage may simply not be relevant to such parents in giving perspective on what they have been through or are going through.

For the most part, parents who have opted not to resuscitate and have had their wishes honored are not going to be posting on this blog *or* on yours because they are moving on with their lives, often having fullterm healthy children.

23wktwins'mommy said...

I have 23 week twins, I try and live one day at a time. All I have to say is my kids are doing great to me and they always will be, today at 9 months adjusted age and years down the line. It doesn't mean they will be unaffected...again, I am not naive, I know they are and in some ways always will be. And of course I never want to see them in pain or suffer, but I know this is impossible for me to prevent. We are just enjoying them and loving them every day.
I don't want parents who opted not to resuscitate to comment on my blog, that's not what it's there for. This is a blog more suited for these types of discussions, but I guess the parents who have opted not to resuscitate have moved on and don't feel compelled to participate in discussions on parental choice. I just thought at least a couple would, but I guess not.

Helen Harrison said...

To 23 wtm:

If I were a parent who had turned down resuscitation between 22 and 26 weeks, I'm not sure I would want to enter such a discussion with you, since your aim appears to be simply to convince others of the "rightness" of your decision and the satisfactions of your life (which no one disputes, as far as I can tell -- it is your decision, your perception, your family.)

Under the circumstances, I would be surprised if we get any legitimate responses to this thread.

The Preemie Experiment said...

First off, I have heard, via email, from parents who have chosen to not resuscitate. On average the gestation seems to be around 24 weeks. I don't post specifics about the content of the emails because I honor the confidence entrusted to me.

Secondly, I believe that we won't see comments from many who chose comfort care. They have no reason to be seeking out blogs like mine.

future of hope said...

I have tried, over and over, to understand the hostility that emanates from several of the regular posters whenever someone else disagrees with their viewpoint. Anyone on this blog that shares a personal point of view that differs from the majority is chastised and derided. We are accused of "having our heads in the sand", or "making lemonade", or "out of touch with reality" or "searching for meaning in our chaotic and painful lives". Not once have I ever said or implied that my personal choice is the correct one for all people. I certainly have not read in any of the posts of 23wktwins'mommy saying anything of that sort either. I stand by the fact that I made the correct(and informed) decision in MY CHILD's case. And to forstall the questions of why am I reading/posting here if I am so goshdarn happy - the answer is simple. I am the mother of a child that was born 14 weeks too soon. He will bear the scars of that early birth his entire life, in many, many ways it will shape and control his life. He shares many of the same "preemie quirks" that are mentioned here, in addition to his CP. But unlike the portrayals that so many of you give of your kids, my child does not spend his days mired in pain and dispair. He actively participates in and embraces life. (Yes, I realize that he is only 10, and I don't understand what adulthood will bring, etc.. etc.. etc... but that can be said to ANY parent, of ANY child) I am posting here for the many silent readers that no longer have a choice to make. Their choice is behind them, and they need to know that life can go on.

Helen Harrison said...

To future of hope:

Of course life goes on! Good grief!

And no one bears you (or the "silent readers") any hostility. No one questions the "rightness" of your decision -- it is, after all, your perception, your decision, your family, and that's what counts.

Please, however, return the favor, and let the rest of us write honestly about our perceptions,
decisions, and families -- without the insults and insinuations that began this exchange.

That's all anyone is asking.

Anonymous said...

We provided comfort care to our son at 23 weeks. He lived for an hour and 11 minutes in our arms; no tubes, no wires, no bright lights, no monitors, no alarms and hopefully no pain. At the time, it was not a difficult decision for us. The delivery was the difficult part. I was totally aware of the situation so I didn't want to push, I didn't want him out b/c I knew out meant over and I was so afraid of that. Bringing him into world so early was a death sentence for him and that is the guilt I live with everyday. Even now as I am "preemie-educated" I strongly believe that not resuscitating our son was the right decision for our family. It wasn't his time.

I requested a DNR for my next pregnancy. No heroic measures before 26 weeks. This time around I was very informed, prepared and sure of my positions, or so I thought. Things changed quickly when I was in the delivery room at 24 weeks.

No one can pass judgment- these decisions are difficult and heart wrenching no matter what you choose. I can say that confidently as I have experienced both circumstances.

There are still times today when I see the news celebrating the birth of a baby the size of a stick of butter- they say he's a "miracle" and going to be "fine." And although I know better sometimes I curse myself and think, maybe I should have given my son a chance for life. At times I still feel anxiety over our decision for comfort care but more often I feel at peace. I am proud of my guardian angel and feel blessed that I was able to know him, even for a short time.

Today my daughter is 19 months old.

23wktwins'mommy said...

Well PE, with all due respect, they sought out your blog enough to email you about their experience of comfort care at or before 24 weeks.

I advocate for parental choice and like future of hope, I want people who already made their "choice" (often without real information) to understand that not everyone who has a former premature child is unhappy and believes they would chose death over their current life.
I just wonder why people who believe their decision was the right one don't advocate here for parental choice, yet are emailing PE and Helen. For one, this would help parents who are currently debating their decision about resuscitation by giving them an example of a personal experience. We know the parents who opt not to resuscitate are well informed, I agree this must be true. I'd like to hear specifically what they feared for their child that brought them to this choice. This isn't about me trying to convince people they made the wrong choice, it's about openly discussing the very difficult place I've been in and many others as well. There is clearly a huge disparity between what information parents have when in the position of whether to resuscitate or not. I wanted to hear what info they had, what their personal experiences were (like the nurse who had seen the severely affected children with birth defects), and how the NICU responded to their choice (which I'm sure also varies since some of us were supported in our DNR decisions, while others were not.)

Helen assumes I want people to share so I can make them feel bad about their decision, well that's not true. Even though they might "move on" when they have a healthy full term baby, I highly doubt the pain of their decision ever leaves them, in the same way the pain of my decision will never leave me. This isn't about throwing stones, it's about honestly discussing the implications of the "choices" that many of us were not fully prepared for. This blog is about getting the true story out about prematurity and its affects, clearly some people have a better understanding of what those are prior to experiencing it for themselves. Let's hear about where they got their information and figure out what we CAN do about parents who have yet to be thrust into a decision without enough information.

And please stop accusing me of being insulting in this thread without specific examples.

terri w/2 said...

The blog here is so valuable because it represents all viewpoints, and all experiences are welcome. From briefly going down the list of other blogs Stacy has given - many of them contain things like the word "miracle" - I cannot stop at blogs that perpetuate the myth that all prematurity and the heart wrenching decisions that I've had to make personally are ANYthing close to miraculous.

Does that make me a bad mother because I don't agree that extreme prematurity is something much less than miraculous? No. It means that I do not comment there as these parents are at a vastly different place than I am. I cannot relate. Imagine a mother who chose not to resuscitate at 23 or 24 weeks (and was actually listened to) - there is NO way they would stop at a blog claiming all in the prematurity world to be miraculous. What a slap in the face of her reality.

Stacy is doing a wonderful job with this blog because it does welcome and generate discussion from many different parents. She has never made anyone feel that their decision was the wrong one by insinuating anything less than full out life support somehow makes you less of a parent.

23wktwins'mommy said...

I think Helen and Terrri w/ 2 are confused. When did I ever say I wanted people who opted not to resuscitate to frequent and/or comment on my blog?
I'm talking about discussions HERE. It seems every time I make a point it is either ignored or misconstrued.
And those of us who are thankful for our children and blog about them don't pretend everything is fine. Some people, including me, believe the fact that our children are alive is a miracle. I personally think all children are miracles but that's another story. We don't sugar coat our lives Terri. We blog about our every day struggles, joys, and affects that these children have on our lives. Just because we're not unhappy they are alive does not mean that our blogs claim all in the prematurity world is miraculous. Why do you see everything as black or white? We write about projectile vomit (some even post pictures), we write about numerous doctors appointments, physical therapy, CP diagnosis, PVL, oxygen needs, g-tubes, oral aversion, SPD dx, the list goes on and on. Sometimes we are frustrated, depressed, and extremely sleep deprived, and we need to vent and get support from those who know what we're going through. Sometimes we are posts are filled with joy when our children reach another milestone. We bounce ideas off one another so that we can have more information when books and outsider's advice don't pertain to our kids.
I don't what blogs you've been reading but the ones linked to this blog do not hide the realities of our lives. Some kids are in wheelchairs, pony walkers, and leg braces. Some kids have shunts and are currently in the hospital.
The difference is we celebrate their lives and for some reason that is insulting to some here.

Anonymous said...

Great post 23wktwins'mommy!

The preemie path isn't all doom and gloom. Its not as 'easy' as most full term paths (if any of it is really easy) but its not horrible either.

We preemie parents rejoice at sitting up more than full term moms. We rejoice at coming off the vent where full term moms don't even know what that is. We rejoice (as TPE has) when our child rides a bike, probably more than most full term ones. We rejoice when our child does good in school, probably even more so than most unaffected full term ones.

If anything I see the preemie path being MORE rejoiceful (dare I say, miraculous) than most paths of full term children.

Are we mad that they came early? eys! Are we mad that they suffer from being a preemie? yes! But that doesn't mean we can't rejoice in what they do manage to do and find joy in the little things - things full term parents can't understand.

Having that outlook is good - much better for our children too.

It's not all doom and gloom! Its only that way if you make it.

micromom said...

Anonymous 11:10

Your comments are YOUR response NOT we preemie parents. I am a mom to a moderately impacted 25 weeker and I communicate daily withother moms of micros born in the same 2-3 span as my son. I can tell you that you DONT speak for any of them. Please refrain from acting as though your superior "mothering" of a preemie speaks for all as it really doesnt and just perpetuates the martyr image which makes me ill.

Rejoice my ass. My son didnt deserve to be born early and there was/is nothing miraculous about his birth. Pain, suffering yes but miraculous? No.

23wktwins'mommy said...

I'm pretty sure anonymous is referring to my comment...the preemie parents who keep these blogs that were accused of "claiming all in the prematurity world to be miraculous."-Terri w/ 2. Which I have pointed out is untrue.
If anonymous 11:10 posts here I'm sure she realizes she doesn't speak for all preemie moms. Clearly there is a disparity between how we view our children and our lives.

Anonymous said...

micromom - I'm specifically talking about this:

"Some people, including me, believe the fact that our children are alive is a miracle. I personally think all children are miracles but that's another story. We don't sugar coat our lives Terri. We blog about our every day struggles, joys, and affects that these children have on our lives. Just because we're not unhappy they are alive does not mean that our blogs claim all in the prematurity world is miraculous."

Yes, the fact that our children are alive is a miracle. Rejoicing in what they can accomplish is so much better for your children. Yes, its tragic that they came early and suffer life long for it (my son (a 26 weeker surviving twin) will never be like his friends - he's deaf and has SPD), but we celebrate the things he accomplishes because they really are so big for him!

Do we use such phrases as:
"Rejoice my ass. My son didnt deserve to be born early and there was/is nothing miraculous about his birth."

around him or to describe any aspect of him? Heck no!

His birth was tragic and there is no rejoicing in that, but his life is miraculous - everything he does is a miracle, moreso because of his tragic birth! Being a preemie doesn't change the fact that, to us, he's a miracle. The day the tube comes out and he eats on his own will be a miracle we will definitely rejoice in, just like so much he does.

That's the difference myself and 23wktwins'mommy are talking about - while there birth is horrible and not something to be really celebrated, their life is - no matter how affected.

Harboring such negativity about situations one can't control is not good for anyone or the child.

Am I saying be unrealistically happy and forget about all the research and statistics and all that? No! But at the same time it shouldn't cloud your overall view... I get the feeling, especially from 'terri w/2' that that is the case.

Prematurity is a tragedy but it doesn't have to the negative focus many here make it. There are many who agree with 23wk and me - but they don't post here anymore because of the negativity. You don't see too many of the active preemie mom bloggers posting here anymore do you? No, because they are trying to be as optimistic about their children as they can while keeping the 'research' in the back of their head. As a matter of fact I almost learn more about prematurity from reading Holland and Eden's blog than this one...

Someone has cancer and will die - does living out their last days in anger make it any better? My aunt died of stomach cancer 2 years ago (which for anyone knowing about it, once its found you usually have a few weeks)but spent her remaining months very optimistic and as happy as she could muster - her doctors believed it helped her live much longer... and I believe there is research to back that up.

I truly believe that doing this rejoicing is better for our son. My son will never be like his peers and may never live on his own but I accept that and find joy where I can.

We are pregnant and already have a DNR for prior to 26 weeks (if the hospital acknowledges it is another issue), yet our son was born at 26 weeks - this doesn't mean we love our son less because of his gestation but we are aware of the risks and accept them now.

Microsmom said...

Anonymous 12:08

Your reality is not everyones. What I mean is how you feel/cope etc works for YOU. To imply that others should do what you do is what bothers me. I dont love my son any less than you love yours. The difference is that I have a different belief than you. This doesnt make you right and me wrong, nor vice versa. Im glad you have found what works for YOU.

I find it VERY insulting that those that disagree with you are some how wrong.

To you it is a miracle your son is alive. To me it is modern medicine which is NOT miraculous. I can agree to disagree without insulting you. Can you do the same?

On the note of many bloggers not posting here any longer I have a different take. Most of the crop of bloggers kids are <3 with H&E 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 was not her exact phrase but what i got from it. If I misinterpreted I am sorry Chris)

Anonymous said...

"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."

And when we feel better it makes us better parents.

Are you trying to imply that our children's lives have no value and those of us that celebrate our children are doing so selfishly, as to try to make us feel better?

It seems to me you are implying that preemies aren't be be valued? If that's the case... well...we'll agree to disagree there.

Here's another preemie blog mom, Kathryn, who doesn't post here anymore but who's blog is fantastic, this post in particular: http://ryntales.blogspot.com/2007/09/from-outside-in.html

Jennifer said...

"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."

Are you for real? Do you really think that a preemie mom who blogs about how much they love their child or how fantastic they are are living in some dream world?

So a preemie mom writing about how much she loves her child with CP, deaf, feeding disorder, and enjoys every moment she has with her child is doing so out of denial?

So I guess a life of disability is not worth living?

Wow... it's not possible to find joy in a disabled child huh?

If I were you I'd think before you post and insult so many of the preemie moms here.

Microsmom said...

"Are you for real? Do you really think that a preemie mom who blogs about how much they love their child or how fantastic they are are living in some dream world?"

No I dont think they are in a dream world. Of course they love their children. I do however think that many parents of preemies (micopreemies in particular) have a NEED to justify in their own mind whythey chose resusucitation and it comes out as "look how great my xyz old child is doing" OR "even though johny has spastic cp, is deaf, in pain, look how happy he is. He smiles all the time" That to me is a justification to make THEMSELVES feel better. Thats what I meant.

I never said a life with disabilty wasnt worth living nor did I say there was no joy.

And for the record I did not intend to insult anyone, only to respond to comments I found insanely insulting.

The Preemie Experiment said...

23wktwinsmommy wrote: "I just wonder why people who believe their decision was the right one don't advocate here for parental choice, yet are emailing PE and Helen."

Not all people are advocates. Not all people are driven to tell their story in hopes of helping others. And, that's ok with me. "How" those people found my blog varies and I will respect their privacy. There have been others who have posted on my blog, who have also chosen comfort care, and they have shared their stories.

When I started this blog, it was never my intention to constantly debate the issues surrounding resuscitation based on gestational age. I don't shy away from it, but it wasn't the reason I started the blog.

I will not ask that we cease the discussing the topic, but what I will suggest is that we all take a look at what may be driving our responses. Passion? Fear? Guilt?

I really think that Buddhistmama said it best when she wrote: ""It is unclear to me why my choice must threaten someone who has made a different choice, unless they believe things would be better if we all made the same choices."

And, as far me not blogging more on the positives in Paige's life....

I did not start this blog with the intention of only featuring Paige. My kids have separate pages in which I update famly and friends on how they are doing, the good and the bad. I didn't start this blog to chronical Paige's life. I wanted this to be a place where there could be open discussion on ALL aspects of prematurity.

Just because I am not consistently posting the positives in Paige's life, does not mean there are none. Along with the rough days, Paige has great days too. The lack of consistency in posting positive aspects of her life, should never be construed as a lack of love towards her. Paige is loved and very much wanted. I am in awe of my child and have been from day one. On Monday, you will see a positive post about her, in honor of her birthday.

Jennifer said...

"I do however think that many parents of preemies (micopreemies in particular) have a NEED to justify in their own mind whythey chose resusucitation and it comes out as "look how great my xyz old child is doing" OR "even though johny has spastic cp, is deaf, in pain, look how happy he is. He smiles all the time" That to me is a justification to make THEMSELVES feel better."

I think you need to read this study:
http://news.independent.co.uk/health/article2723237.ece

You're accusing parents of wrongfully resuscitating their child and then being wrongfully happy about it.

What about the parents such as anon 8:28 who knew about the risks but chose to resuscitate at 24 weeks - she's wrong too huh? She doesn't deserve to be happy and enjoy her child?

I'm having a very hard time understanding your point of view here, its very judgmental.

Tammy said...

To resuscitate or not to resuscitate and who’s decision it should be is a very personal matter and I can see why so many people’s emotions are heightened by this sensitive subject. But I think we could be missing the forest through the trees. (I’ve always wanted to use that expression). I think I can safely say that we can all agree on one point, parents and doctors need to be informed with the facts before making such decisions. The aftermath of premature birth is too great to not have the WHOLE truth. There lies one of the biggest problems. No one is following these micro-preemies’ cases. My son will be six in January. We have been apart of only ONE study, which involved the synagisis shot for RSV prevention. That’s it. It seems absurd that doctors aren’t following the outcomes of such extraordinary births. And what astounds me even more is how little specialists know about prematurity. How can anyone truly be informed of the reality and effect of premature birth if the current data is not being documented?

Anonymous said...

I'm Anon 8:28 the one with the 23 and 24 weekers, I wanted to comment on this statement:

"I do however think that many parents of preemies (micopreemies in particular) have a NEED to justify in their own mind whythey chose resusucitation and it comes out as "look how great my xyz old child is doing" OR "even though johny has spastic cp, is deaf, in pain, look how happy he is. He smiles all the time" That to me is a justification to make THEMSELVES feel better."

I often, in fact very often talk about the strides my micro preemie daughter has made. As an educated mother of 2 micro preemies I realize how amazing many of her accomplishments are. When I read the statement above, I took time to consider the reason why I feel compelled to brag, for lack of a better term, about my daughter and I really do not think it is to make myself feel better about my resuscitation decision. I think it is b/c I am so aware of how challenging life for a preemie can be that I'm constantly in awe of her. This overwhelming feeling often leads me to make positive comments similar to the ones in the quote above. As I stated earlier, I chose not to resuscitate my son and I am still comfortable with that decision even though I see a positive outcome so far for my daughter.

Once you have a micro preemie and live in the NICU months on end, I really don't think you can be naive or blind to the fact that your child will have issues. I don't think my head is in the sand. I think that for now, I'm riding the fun part of this hell of a roller coaster, and I'm really enjoying it and I'm bragging about it.

Helen Harrison said...

Microsmom is, I think, rightly objecting to false characterizations of parents who feel less than celebratory about neonatology and its aftermath.

Please understand that there are parents on this blog who love our children dearly, have cared for them lovingly and well for decades, who are not "mired" in "negativity" or "gloom and doom," who find joy and happiness in their children where it is posssible, but who still do not "celebrate" neonatology or our children's outcomes. These are not, as some of you seem to think, incompatible perspectives.

While we value our children, we do not think, on balance, that their resuscitation, treatment, and survival was in their best interest or the best interest of our family.

Although our lives are not without rewards, we would not urge others to join us (nor disparage them if they chose in favor of such lives.)

We would certainly not insult those who might look at our children and our lives and decide *not* to join us as lacking in "unconditional love," or being "less than honest," or "less than admirable."

You say, Jennifer, Future of Hope, etc., that you "can't understand" us, that we are incomprehensible to you.

Having watched the evolution of attitude among mothers of disabled children for decades, I *do* feel I have a bit of understanding of *your* feelings at this time in your lives.

You will probably protest that I know nothing about you, and I'll concede that you may all be quite "special" and different from the many, many families that have gone before you -- only time will tell.

But in the meantime, it would be nice if you could stop insulting those of us who are further the preemie road and see a bit more of the landscape.

23wktwins'mommy said...

Wow anonymous. I wholeheartedly agree with this comment. You captured perfectly the pride I also feel for my children.
Thank you also for sharing about your choice not to resuscitate at 23 weeks. I want more children and I have 2 23 weekers to take into consideration. I have to put their best interests first when I think about having more children and make a plan about limits of resuscitation. Thank you for sharing your experience.

Jennifer said...

Helen,

I hope you don't find my rebuttal insulting, yet don't find the comments of micromoms insulting to us! I am a life long member of 'preemie-dom' and find her comments out of line. Her issuing an apology would be the right thing to do.

My comment:
"I'm having a very hard time understanding your point of view here, its very judgmental."

Is in response to such comments as:

"I do however think that many parents of preemies (micopreemies in particular) have a NEED to justify in their own mind whythey chose resusucitation and it comes out as "look how great my xyz old child is doing" OR "even though johny has spastic cp, is deaf, in pain, look how happy he is. He smiles all the time" That to me is a justification to make THEMSELVES feel better."

"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."

Preposterous statements and grossly insulting to parents that blog about enjoy their children even though others may view their existence as suffering - many of the blogs here will say otherwise. None of what I have said here come even close.

I am in agreement with the statements regarding neonatology in general but do not agree in SLAMMING parents for making choices that 'older preemie' moms wouldn't agree with. It is impossible to say, while in the NICU, the type of trouble a child will have.

Being born at 34 weeks would have never prepared my parents for the types of troubles my brother has had (he still lives at home at 27 and can not organize his life to take care of his finances yet live alone) - preemie related or not can't be said.

My daughter, born at 28 weeks, has done much better than I did, born at 30 weeks.

One can not say how a child will do - statistics or not.

Micromom said...

Jennifer,

I commented on my opinion. It is just that and I will not apologize for my opinion.

Helen Harrison said...

Micromom, I'm with you.

You have nothing to apologize for.

I have been in the midst of similar "tantrums" since I first came on the Internet in 1996.

I have heard over 10 years of virtually-identically-worded insults, howls to retract my words, etc., from enthusiastic new parents and the special interest groups that delight in encouraging these parents in a sense of aggrieved outrage.

But I now know (since many of these preemie parents are eventually kind enough to tell me) that they recognize, in retrospect, they were fighting more with their own inner demons than with me.

It seemed more satisfying to scream at me and lash out at "statistics" than to scream into their pillows, I guess.

These parents often come to me now for advice and help, and I do my best to be there for them. Some have become good friends. Some have become members of NAROF (Neonatology and the Rights of Families) who write and speak out on behalf of informed parental choice in the DR and NICU.

terri w/2 said...

Micromom:

Couldn't have summed it up better myself. I am not apologizing for anything said either.

And Helen;

The same thoughts crossed my mind as well - I remember when my second daughter 26 weeker came home after 3 months - no oxygen, no monitor, no meds - eating well, interactive - no sign of any neuro problems. .there was absolutely no way I would have believed that 3 years later she would be dx with CP, and then 16 years later with high-functioning autism, and probably never live independently - if someone had mentioned these as even POSSIBILITIES, I would have raled against them.

I'm reminded of the stages of grief - we all have to work through them, sometimes we get stuck in one for a long time. Denial seems to be one that parents of preemies get stuck in for awhile simply because our kids weren't "born with" problems, but rather acquired them along the neonatal way. I remember one of the Parent Care speakers from long ago talking about this phenomena in preemie parents. Being that our kids have "developmental disabilities" - we have to wait and wait and wait for years to see if they will develop along typical paths. It's as if we're waiting for years for the shoe to drop.

Nancy said...

"On the note of many bloggers not posting here any longer I have a different take. Most of the crop of bloggers kids are <3 with H&E 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."

Mom of an older preemie here and a blogger. I have a few blogs in my blogroll as well of preemies who are over 3 and doing quite well. "Quite well" of course is a loose term and you can interpret it's meaning how you wish.

When my daughter was born, I scoured the internet looking for stories of hope and "good" outcomes. When I found some sites discussing outcomes other than what I hoped for, I typically closed the window and moved to the next site on the google list.

I am also a blogger that hasn't posted a comment here in quite some time precisely because of exchanges like these. It infuriates me that some people won't extend the courtesy to others that they themselves demand. I have seen it over and over here and on other blogs.

The parents who are screaming that their child is suffering because of medical intervention has every right to believe that. The parents who are screaming that their lives are full of wonder because of medical intervention are right in believing that. Why is it that it has to be argued everytime the question of whether or not to intervene with a micro preemie arises?

I understand that this is something that we are all very passionate about. But can't we do that without throwing around things like (and I am totally paraphrasing here):

"You haven't been a parent long enough to partake in the conversation."

For the record...our neo told us all the horrifying stats before Caitlyn's birth (a good 10 hours so more time to process than most get). To be honest I was surprised the kid actually took a breath at birth as preemie to me meant a kid born a few weeks early and a little too small. We also told every doc that Caitlyn would pretty much guide our decisions. If she had a bleed over grade II, if vent settings were so high and she was still struggling, we were going to throw in the towel. Thankfully we never had to come to that point. But every doc we spoke to listened to what we had to say and pretty much agreed with us.

Helen, I do have a question that I have been meaning to ask you. You have stated (as well as others) a few times about the increased strain on special education due to the increase in preemies surviving. Where has that been documented? I ask because as a special educator, I can honestly say that in 10 years I have only ever had one child who was disabled due to their prematurity. Not that I am a veteran, but I have been doing this for 10 years and have consulted in numerous school districts. I'd be interested in seeing any references you have to this.

Helen Harrison said...

Nancy,

You might want to get started with Berman and Urion, "The misdiagnosis of special education costs:district practices have no bearing but medical and social factors accelerate spending," _School Administrator_ March 2003.

Several of us have quoted from this, and similar, articles on this blog before, but we'll do so again if people are interested.

And you have mis-paraphrased about new parents being unwelcome in the discussion.

I do think, however, that it is important to acknowledge that early perspectives may change as the handicaps and health of their preemies worsen over the years, which they ususally do. Again, I'll be glad to document.

Nancy said...

"I do think, however, that it is important to acknowledge that early perspectives may change as the handicaps and health of their preemies worsen over the years, which they ususally do. Again, I'll be glad to document."

I think this is the issue that some of the parents here are having Helen. They have stated over and over that they are not ignorant to what the future may hold for their children. They are aware of the outcomes. And a lot of that has to do with all of the studies that you have presented and brought to everyone's attention that may or may not have been aware of.

However, what they are trying to relay (I think, and ladies correct me if I am wrong here) while the health and heandicaps of their children may change, be it worsen or improve, over time, their perspective of their children will remain the same.

If you could email me some of the info that you have on the issue of special ed, I would appreciate it. Since you have already posted it, I don't want you to have to do it again and bore everyone to tears :P

Nancy said...

Helen,
I didn't leave my email address and I am not sure if it's on my blog or not....sorry

snanook@sbcglobal.net

Helen Harrison said...

To Nancy who wrote:

"They have stated over and over that they are not ignorant to what the future may hold for their children...[and] "while the health and heandicaps of their children may change, be it worsen or improve, over time, their perspective of their children will remain the same."

This is precisely the sort of thing the parents who fought with me online told me in the beginning. But when reality hit big time, they reconsidered.

As for the study, it and others are available for free on the Internet. Try doing a search on the publication and the authors.

If that doesn't work, get back to me at Helen1144@aol.com and I will send you a copy.

Jennifer said...

"However, what they are trying to relay (I think, and ladies correct me if I am wrong here) while the health and heandicaps of their children may change, be it worsen or improve, over time, their perspective of their children will remain the same."

That is it exactly. To tell a new parent, especially one fully aware of what the future holds, that they are living in a dream world because they 'value' their children and boats about how much they love them is very wrong.

Just because someone does not look at their child with regret does not mean they aren't fully aware (or perhaps even looking for) problems in the future - just that when they do happen they won't rejoice any less in their child existence.

Stacy, I hope it doesn't suprise you that exchanges like this one don't help you expand your readership. I must say I'm very disappointed in what many of these 'older preemie' moms have said of us today.

Nancy said...

"This is precisely the sort of thing the parents who fought with me online told me in the beginning. But when reality hit big time, they reconsidered."

Can I ask what it was that they reconsidered? Because maybe my point wasn't taken in the correct context. Based on your reply to me, they reconsidered the value or how they viewed their child?? If that is the case, I find that to be appaling!

I can see the parent who has the optimistic view on their child's outcome reconsidering the view of the outcome. But reconsidering their views and perspective of their actual child as a human? I really have a hard time coming to terms with that.

Thanks for the article. I have read through it and to be perfectly honest, I don't see the authors as stating prematurity as the sole cause for the increase in special ed costs. Unless I am reading it wrong. Don't worry about sending the info. I will try and dig some up and if I run into a roadblock I will contact you.

23wktwins'mommy said...

Thanks Nancy for chiming in. You have done a great job explaining things. I've decided participating here is useless. I have a good basis for what to expect in the future, and thanks to the many preemie mom blogs that talk about the REALITIES of their every day lives, I am equipped with much more useful information than I find here. Statistics are one thing, reading about parents going through these experiences in every day life is much more helpful to me.

So you can accuse me of "putting my head in the sand" because I'm yet another "new mom" who doesn't want to hear some of you moms talk about how much your lives suck anymore. It's actually kind of toxic to hear how miserable you are. I guess this means I'm in denial, huh?
And don't hold your breath Helen, I won't be emailing you in 10, 15, 20, or however many years. You'll never win me over to "the dark side."

The Preemie Experiment said...
This comment has been removed by the author.
Helen Harrison said...

To Nancy:

The article does not say that prematurity is the *only* reason for skyrocketing costs, only that NICU care is the *primary* reason.

Here are some excerpts from the article:

"Local school districts nationwide are experiencing increases in special education costs...Primary among the causes of [these increases] are changes in medical practice. Medical technology has advanced to such a degree that children who would not have otherwise survived due to prematurity or disability now live well beyond their school years...Neonatology, the specialty of newborn medicine, has triumphed to the point where premature infants survive at ever-lower birth weights...
studies have shown a close correlation between prematurity, low birth weight and lifelong developmental and neurological problems. Of infants born at weights under 3.3 pounds, approximately 10% will develop classic cerebral palsy with seizures, severe spastic motor deficits and mental retardation. All will have multiple medical issues significant to the school day. 50% of children born weighing less than 3.3 pounds will have significant cognitive difficulties without spastic motor problems. Half of these will have measured intelligence in the borderline to mentally retarded range. The other half will have significant to severe learning disabilities.

In Massachusetts we have seen this trend in the enrollment data for early intervention and preschool programs. In 1992, 9,809 children were served by early intervention with 59% considered to have moderate or severe delays. By 2002, the number of children being served by early intervention had increased by 169% to 26,339. However, in a more ominous trend, the number of these children with moderate or severe delays nearly quadrupled during those years from 5,818 to 22,661."

Berman. The misdiagnosis of special education costs..._ School Administrator_ March 2003.

For a related and more recent story see: "Rising Special Ed Costs Place Heavy burdens: Educators Say All Students Hurt" September 27, 2007.

www.thebostonchannel.com/investigative/14223930/detail.html

Here are some excerpts:

"Ellie, 4, attends The Perkins School for the Blind. She has cerebral palsy and impaired hearing and vision. The school district she resides in, but doesn't attend, pays most of the bill...
the high cost of [providing such] special education is impacting the quality of regular education. "They're getting devastated, " said Dr. Paul Ash. "Schools across Massachusetts are being slowly dismantled. It's a very sad state of affairs...Some special education students are placed in private schools, where tuition ranges from $50,000 to $240,000. The state funds some of the tuition, but most of the bill is paid for by the school districts...
"Communities have been left with two choices, " said Dr. Ash, "Cut back service to regular education students or raise additional revenue through [a tax increase]. but in more and more communities [tax increases] are voted down. Residents are frustrated with having to pay more."

Helen Harrison said...

Also, to Nancy, who asked "what it was that [experienced parents] reconsidered? Because maybe my point wasn't taken in the correct context. Based on your reply to me, they reconsidered the value or how they viewed their child??"
****

Nancy, here's the sort of thing I'm talking about.

After her son died in adolescence following grueling, lifelong complications from BPD, a mother who had earlier been adamantly against parental choice in the DR and NICU, said the following to me:
"I used to be upset by the Stinsons' book [The Long Dying of Baby Andrew], but now I completely understand where they were coming from."

I can give many, many other examples.

These parents greatly love and value their children. They just feel, in hindsight, after years, sometimes decades, of child and family suffering, that it would have been kinder to let nature take its course when the baby had first been born so extremely premature.

Shannon said...

WOW, I have just finished reading all of the comments and I just wanted to say one thing.

My son is only 29months old but in this short time I have learned SO much. He was a 24weeker. I was never told from a doctor before his birth ANYTHING. Of course they probably didn't have time as he was coming VERY quick.

It wasn't until he was a week old that we were called into a room for a talk. We were told at this point how sick he was, that he would most likely be disabled, would most likely have sight/hearing issues....just plain honesty from this amazing doctor.

I have to admit that I was really torn because I didn't know a thing about prematurity and I loved my son. I didn't want to let him go. I told the doctor that I didn't want to play God so to continue with treatment. However if he was to go into cardiac arrest we didn't want anything done for him.

Now, 29months later it is SO obvious how prematurity has affected him. He has severe CP, is considered blind/deaf (although he has been hearing with his cochlear implant now for four months and does wear glasses), and feeds by j tube 15hours a day.

Ashton will never walk, he will never live a "normal" life, he will never be the child that I thought I was having. I get so angry when people start in the resusitation topic.

I can tell you that I USED to say that all babies 23+ weeks should be saved no matter what. However I now can say that I don't feel that at all. I can also now say that if I was to have another baby at 24 weeks I would choose comfort care. Sure there would be the "chance" that this second baby would come out without Ashton's issues but at the same time there is no guarantee. People can judge me for this but until they live the life that I do then I don't care what they have to say.

All of the moms out there that deal with severe cp, feeding tubes, deafness and who knows what else totally would understand my reasoning/thoughts for this.

It is so easy for a mom of a 23 or 24 weeker that has kids that are relatively "okay" to judge these parents that choose comfort care. And this is ONLY because they are not dealing with all of the complex issues that come from prematurity.

This is a topic that can be touchy for some but in truth I think that ALL parents loves their children unconditionally. Whether this be saving them and raising them or choosing to let them go.

Nancy said...

"Nancy, here's the sort of thing I'm talking about.

After her son died in adolescence following grueling, lifelong complications from BPD, a mother who had earlier been adamantly against parental choice in the DR and NICU, said the following to me:
"I used to be upset by the Stinsons' book [The Long Dying of Baby Andrew], but now I completely understand where they were coming from." "

Again, they have reconsidered their 'choice' and decision. Not the value or worth of their child. That is the point that I was trying to make. That after years of what they have considered to be pain and suffering, they realize maybe they should have made a different decision. I think what some of the ladies here have tried to state is that despite what the future may hold for them, their decision to save their child's life and not "let nature take it's course," would be the same decision that they would make again.

Now I am not saying this is true of all people. Obviously it is not as many here have stated that they would not. But the women who have repeatedly said that they are comfortable with the decisions they have made, I have a hard time understanding why it is that you are trying to dispute that bu citing examples of other women who have told you otherwise? For those women, making a different choice would be right for them. For the ladies like 23wtm, she feels confident in the decision that she made and is happy with the outcome of her children.

Helen Harrison said...

To Nancy,who says:

"For the ladies like 23wtm, she feels confident in the decision that she made and is happy with the outcome of her children"

Good, I'm happy for her and her family, and hope her happiness continues.

But again, I must caution people coming into an extremely premature birth situation, who want to know how this might impact their child and family, to look beyond accounts of a small set of very early outcomes, which are not yet fully understood.

Parents should also be aware that perspectives can change as we come to recognize the extent and impact of our children's outcomes over time.

This doesn't mean we don't love our children, only that some of us come to recognize that if faced with a similar situation again, we might make different choices.

This recognition leads us toward a greater tolerance for those who choose comfort care in the beginning for their imperiled newborns.

Miracles said...

Stacy,

I have been a reader of your blog now for the past year and I respect each and every topic you have brought to the table. You have a beautiful daughter and have done a great job. Please do not take any offence to this but my time here has come to an end with the most recent discussion that has taken place. I like many other preemie moms; come here looking for answers/help to many questions regarding preemies. I have found comfort in hearing from others about their experiences but do not find comfort in two of your commenter’s who always seem to take front and centre stage of every topic.

If I were a new mom coming into this with my child still in the NICU I would be terrified because of the things that HH & TerriW2 post here. I find them to be very negative on every single topic. Including their own children. I also find they tend to put down anyone who has anything positive to say here. As the mother of two former preemies, yes Helen I consider them “miracles” and always will. Not because the outcome of their prematurity was that they came out practically unscathed, but because they are here with me and they are alive. That in itself is a miracle.

So if you feel the need to bash or scold me, go right ahead. I’m a big girl and I surely can take it. I wouldn’t expect anything else from Helen or Terri it seems to be what they do best right along with Helen quoting every study from around the world you come across. Which I must say is getting a little old.

Oh and by the way Helen, I am a mom in her mid 30’s who blog’s. So much for your theory on that.

Helen Harrison said...

To Miracles who said: "Oh and by the way Helen, I am a mom in her mid 30’s who blog’s. So much for your theory on that."
****

My theory on what?

I think you have misunderstood something here.

The Preemie Experiment said...

To those who choose to stop reading my blog...

It would be impossible for me to please everyone. I will not try.

To those who stick around....

I hope we all can learn from each other.

Anonymous said...

I think the point that keeps getting missed here by Terri and HH is that they are demanding a certain level of respect for their choices or ideals. That is fine. I absolutely DO respect them. I would never question what you want to do with your child.

But please do extend the bloggers with opposite viewpoints the same courtesy. Had I read comments such as yours 3 years ago, I would have been very discouraged for my 28 weeker. But since you can never tell how any individual preemie will do, mine has shed all specialists, sees only his pediatrician, and has just recently tested on track for his age.

Your points of view are respected by me, but I feel that sometimes you are trying to make us view our children in another light. We deserve to have our viewpoint too.

TPE....I notice many times you sticking up for Helen and Terri. Rightfully so, since much anger is often directed their way. But might I suggest that you don't go out of your way to defend the parents with the opposite point of view?

The Preemie Experiment said...

Anonymous wrote: "but I feel that sometimes you are trying to make us view our children in another light."

I can assure you that this was never my intention. I would not want you to perceive your child to be more fragile than they are, nor would I want you to perceive them to be "out of the woods" before school age. All I am trying to do is present a side that is hardly ever discussed in the media.

Anonymous also wrote: "But might I suggest that you don't go out of your way to defend the parents with the opposite point of view?"

It's been a hard day for me (emotionally-given that it is Paige's birthday), so please forgive me for not understanding you. Are you telling me that you don't feel that I defend the opposing view? Or are you telling me NOT to defend the opposing view?

Helen Harrison said...

To anonymous 4:05:

Extending respect to people of opposing views does not mean letting baseless insults and misinformation go unchallenged.

I have merely responded,as has Stacy, Terri, etc.,(with a great deal more courtesy than was shown to us), to commentors who suggested that any parent who declines resuscitation under 26 weeks in favor of comfort care is lacking in unconditional love, less than admirable, probably not a devout Christian, incomprehensible, and less than honest.

For those whose preemies are "doing great" and have good outcomes, we are all genuinely happy for you. These outcomes do occur, but they clearly do not represent the majority of outcomes for very low birth weight infants, most especially for extremely low birthweight infants.

For those who say they love their children despite not "doing great" -- of course you do, and we are all with you on that!

Your personal reaction, anonymous, to the information and views expressed on this blog seems to be contingent on how you think your child is doing at the moment, and that is fine.

But others are in a different place in their "journey" and need all the support and validation that information (including the dreaded studies and statistics) can give them.

Again, I think Stacy is right when she says this blog is not going to suit or please everyone. But there is a great deal more information to share on prematurity, and the rest of us would like to get on with discussing it.

Anonymous said...

TPE:

First, congratulations on 9 years with Paige. What a beautiful little girl! I do mean that there are times when reading this blog that it seems that you vehemently defend Helen, Terri, etc but not the other point of view to the same degree.

Helen...I don't *think* my child is doing well. I know he is. This has been proven to me by every expert who sees him. By recent testing. And last of all, the most important, by HIM. He proves daily that he is doing well...it is not something I need to *think*, because I see it.

Helen Harrison said...

To anonymous 4:32 who said:

"Helen...I don't *think* my child is doing well. I know he is. This has been proven to me by every expert who sees him. By recent testing. And last of all, the most important, by HIM. He proves daily that he is doing well...it is not something I need to *think*, because I see it."
****

I am delighted for you both!

And if you find it unpleasant or irrelevant to read the information and views on this blog, then I would say: don't read it.

buddhist mama said...

To shannon,
Thank you for your honesty. Again, it is rare to hear from parents like you about why they might choose comfort care and that is PRECISELY why I chose---after thinking about it for months---to post about our decision not to seek resuscitation below 26 weeks.

Regarding 23wk twins mommy question---why don't more people post about DNR decisions,forgive me for saying the obvious, but this is a very hard moral decision to make, never mind discuss them publically and not anonymously in a blog. Those of use who have made these decisions (and not just in theory but in practice) or had to act on them come to this after much thought and through the fire of experience one might say and that is what I wanted to talk about in our discussion on tolerance. I do not see a whole lot of tolerance for these DNR decisions and every time the issue comes up there seems to a little firestorm on one blog or another. Why so? precisely because this is a sensitive topic that deserves extreme respect and offers a real moral challenge that many other topics do not.

It is a pity that people tend to get so emotional in these discussions as to start flinging accusations. For you to call this discussion garbage on your blog may be your sentiment, but I think these discussions are valuable precisely because they are so critical.

As for the viewpoint of Helen and terry w/2 their perspectives are EXTREMELy valuable precisely because they are almost totally lacking in the medical literature. As Tammy said---

" No one is following these micro-preemies’ cases. My son will be six in January. We have been apart of only ONE study, which involved the synagisis shot for RSV prevention. That’s it. It seems absurd that doctors aren’t following the outcomes of such extraordinary births."

It is more than absurd. It is a serious medical shortcoming and it reflects the poor understanding of practices in the NICU that all of our preemies are being affected by every day in this country. This is why this converstation is so crucial...

Anonymous said...

Helen:

I actually don't find it irrelevant (as I said nobody can guarantee an individual child's outcome). I even find much of your information to be interesting and potentially educating to help with resuscitation decisions.

I was simply pointing out that my point of view and personal experience deserves the same dignity I give yours.

I think it would be unfortunate to drive opposing points of view or experiences from this blog, don't you?

buddhist mama said...

Anonymous---
I don't think anybody is being 'driven' from this blog. There are no personal slanders that I see. However, there are serious disagreements and heightened emotions on display---some of which do cause inadvertent offense. I say inadvertent because I truly believe both sides of the debate are not trying to attack the other---they are simply voicing their very strong opinions.

The phrase 'driven from this blog' suggests ad hominen attacks. These are not being made by Helen, but have been made against her and others who share her view, including myself (on Neo Doc's blog now defunct). Yet despite these attacks, we keep coming back because we feel our message is important. As I said in an earlier post, the reason the message about long term outcomes of premature babies is so crucial is because the medical community largely has and continues to ignore these outcomes. There are exceptions, but these studies are few and far between. And often compromised.

My twins were part of a CPAP study---we signed the forms for the randomized controlled trial--while I was in bed, still pregnant, hoping not to deliver at 26 weeks (which I ended up doing). Since signing those forms I have yet to see any followup done on my kids. Not at 3 months, 6 months, one year, etc.

My kids were also part of a huge well funded Vermont Oxford Database that tracks longer term neurodevelopmental outcomes for NICU survivors. Because my twins did so well on their one year evaluation, they never received any further follow-up. This is the kind of medical error that we have been talking about on this blog and others for months. TPE notes that her daughter Paige was only diagnosed with mild CP at age 3 (correct me if I'm wrong). If an entire cohort is written off and not followed after age one because they have 'fully caught up', then these medical research programs are ignoring the exact fact we are blogging about each and every day.

At some point the medical community may take note, but it may still take years if not decades. We are in it for the long haul and to help other premature babies get the follow-up they deserve.

Anonymous said...

Buddhist Mama:

You may not understand this point of view, but being told in not so many words that most of us "new parents" have our heads in the sand and that someday we will come to see their (HH and Terri)point of view is insulting in itself.

I am an adult and do not need to be talked down to.

That kind of attitude is what makes us feel driven from the blog.

Helen Harrison said...

To Buddhist Mama:

This issue goes back at least to the 1970s when preemies were first put on ventilators in significant numbers.

It was then declared(at a conference of bioethicists and neonatal professionals)that conducting this new treatment regimen would be acceptable only if scrupulous and careful follow-up was conducted on the survivors.

Well...flash forward to 1986, when it was reported that:
"'Adequate follow-up of ICN graduates [Intensive Care Nurseries]is scarce...According to the NCHS [National Center for Health Statistics] and the Centers for Disease Control [CDC], no national data system is currently being planned to look systematically at the relationship between low birthweight and subsequent morbidity.' This is a glaring omission, grounds for an argument that ICN technology is being applied as an uncontrolled experiment without assumption of responsibility for its consequences."

[Gustaitis and Young. _A Time to Be Born a Time to Die_ 1986 -- a book which I highly recommend]

OK... and now flash forward again to 2007, we still have no national data system -- this is a national disgrace.

But, what is worse, your children were in a Vermont-Oxford hospital -- which is *supposed* to be trying to conduct responsible follow-up in the vacuum of national data.

However your very high-risk twins were not followed past the age of one (and research shows it takes at least 6 years to uncover even very serious handicaps like CP and retardation in ELBW preemies.)

Buddhist Mama, this is beyond outrageous!

Even if it turns out that your children are perfectly fine, that is all the more reason for them to be followed.

The vast majority of preemies who *are* followed, have significant problems and brain damage. It is just as important to know why some children do not have this damage as to know why most do.

Anonymous said...

I'd like to make a simple point---yes Helen did say "we need to take our heads out of the sand whenever the media or others try to gloss over or misrepresent the realities of preterm birth..."

The crucial item here is "we". In a sense we probably all have at one time or another not wanted to challenge some of these images---for lack of time, energy, or because of our beliefs. The fact that she used 'we' suggests she is speaking about herself as well as others and that is what makes this not an attack so much as a plea...

Odd, that this crucial point has been overlooked in this lengthy, vitriolic exchange.

The Preemie Experiment said...

I'd like to also echo what anonymous wrote.

Helen can speak for herself, but since her words bring out the worst in some, I am going to say this.... I am sure Helen was using "we" in a collective sense.

I would like to also encourage everyone to share their story to any media who will listen.

Helen Harrison said...

To the most recent "anonymous" and to Stacy:

Thank you, both!

I meant the "we" in a very broad, societal sense.

For example, I think the media needs to understand the realities behind the miracle preemie stories.
(The fact that a recent study showed only 1 in 89 sequentially reported stories on prematurity even mentioned the possibility of survival with disability is a "head in the sand" issue.)

I think expectant parents need to know more than most of us did when our children were born about outcomes and options. Anything less is "head in the sand" (though hardly our fault).

I think neonatologists need to conduct high quality longterm follow-up on each and every baby that comes through their NICU door.
Anything less is "head in the sand," and yes, docs, this *is* your fault!

I think the school systems need to be prepared for the onslaught of former preemie children with their complex medical needs and disabilities. (Again, we need good neonatal follow-up to give schools the warning, and we need constant feedback from the schools to the NICUs as well.)

And we need to be thinking ahead about how we are going to care for these children as adults. (Another major "head in the sand" issue, that we can, hopefully, discuss at another time).

Taxpayers need to understand what they are being asked to fund and why, because this is going to cost many, many billions! (Major "head in the sand" going on here!)
***

Over the course of these discussions there have been so many misrepresentations of my words that I hardly know where to begin in trying to address them.

Just to give one example: I mentioned that I have often seen parents' perspectives toward their lives and their children's lives (as well as their views on the "rightness" of neonatal resuscitation) change over time.

This was interpreted by one person commenting here to mean that I simply thought "older" parents have different views on neonatal resuscitation.

And then a mom wrote in saying she was in her 30s and didn't agree with me (about what, I'm not certain), and so my "theory" was disproved.

No...a new mom in her 30s or 40s may have the same perspectives as a new mom in her teens -- it is the *many* years of experience with a child with disabilities, not the age of the mother, that matters here. And if your child is among that happy minority that is not disabled and/or "doing great", then this doesn't apply to you at all.

Thanks to all who have read carefully, thoughtfully and reasonably. I look forward to future discussions with you all.

Longtime Preemiemom said...

Helen wrote: "I think the school systems need to be prepared for the onslaught of former preemie children with their complex medical needs and disabilities."

I have been warning our school system for years! Already, the multi-handicapped class where my son goes is full when they are all there. Of course, not all are preemies, but the room is crowded to the max with so many wheelchairs. They are planning to open a nearby room for therapies.

I have also had conversations with a few young people who are taking education courses for teaching degrees. At least, they have regular-ed teaching students go into a special ed classroom to observe, but some of what is in the textbooks must be outdated based on some of the things they have told me and asked about. The belief that all but a very few "catch up" is still out there. While that may be true of preemies who are born only a few weeks early, the school systems don't seem to realize that they will be teaching children who were born a few months early!

terri w/2 said...

Thank you Buddhist Mama for your thoughtful posts - very eloquent as usual!

Nancy said...

Not sure if you were referring to me with your last omment Helen. But I was the one that paraphrased your comment and said that "you haven't been a parent long enough to participate in this conversation." I wasn't referring to the age of the parent, rather the length of time as a parent. Someone else, micromom I believe shared this idea with you.

Here is what you said:

"Your input at this stage may simply not be relevant to such parents in giving perspective on what they have been through or are going through."

I don't know how many ways there are to interpret that statement, but it certainly sounds to me that you clearly stated a parent with preemies who are only 9 months adjusted have nothing relevant to add to a conversation of this nature.

Regardless of whether or not they can identify with the situation, are they not entitled to voice ther opinions without being told that opinion is irrelevant simply because off the age of their children??

terri w/2 said...

Nancy - I'd like to chime in on this one. .it is not that parents of young children have irrelevant comments, but quite frankly, they haven't been where parents of older preemies have been, so they do not share these parents' perspectives or experiences. Certainly their viewpoints are relevant, but within context of their experience. For example - a parent of an preemie infant who is doing well is probably not going to be able to understand the perspective of a parent of a preemie who is severely disabled, medically fragile who might be struggling with appropriate school placement or group home care. Parents of young infants probably cannot imagine these scenarios at this point and would have some difficulty relating.

If I were to seek out a parent for support, it would be a like-minded parent in a similar situation - namely, another mother whose child is similar in age and function.

Anyway, this was my interpretation of the comment. I don't feel that it was meant to be patronizing or negating.

Nancy said...

Terri w/2,
I have to say, this is absolutely the first time that I have agreed with a comment you have left.

And I understood that when reading Helen's comment. However, throughout several comments left by Helen, this is the precise thing I am talking about. "Tone" is left out of the written/typed word. And despite parents replying asking for clarification, Helen refuses to say, "ok maybe I was misunderstood. Let me try and clarify this."

Also, regaardless of how it's explained, when words like "irrelevant" are used, people will take offense to be being told that their insight on the matter is not worth anything. But again, I have never once seen Helen say, "hmmm, maybe I could have used better word choice."

And I am fairly certain that she will read this comment and say that she is just putting it out there because it's what it is. But she doesn't take in to account the people that she offends when she speaks in a certain "tone" (as much as can be heard in the typed word), nor is it always taken into account the terminology that she chooses to use and how it may be offensive to others reading.

That being said, I think I am done perseverating on the topic as I don't think anything I say is likely to change how things are written around here.

Bowing out of the conversation for now.

Helen Harrison said...

To Nancy who asked "Not sure if you were referring to me with your last omment Helen. But I was the one that paraphrased your comment and said that "you haven't been a parent long enough to participate in this conversation."

No, I was referring to a comment by Jennifer.

But still you have missed the meaning of my words. Terri w/2 has explained it well. Thank you, Terri!
****
And now I'd like to take the opportunity to direct you all to a good article that just out on the "head in the sand" issue:

http://www.scienceprogress.org/2007/11/reporting-the-story/

Anonymous said...

I have been trying, and apparently failing, to follow the gist of the conversation presented in the comments of both this and the previous post. So much raw pain and anger is coming out, with very little understanding from either "side". The thing is, I don't see that the "sides" are all that far apart on their preemie beliefs. Each states that parental choice in resusitation and treatment should be honored. Each states that parents should be educated about all possible outcomes, and each states that parents of surviving preemies need support. So where is the controversy? This discussion seems to be more inline with disability rights, since that seems to be where all of the contention is. Can the disabled live meaningful lives? How much disability is *too much*? How much should one individual life be allowed to alter a family dynamic? These seem to be the crux of the arguments here.

Helen Harrison said...

To anonymous 8:29: who feels the crux of the argument is:

***
"Can the disabled live meaningful lives?"
***

I don't think this is part of the argument. I think we all agree that everyone, whatever his/her condition or past, present or future suffering leads a "meaningful" life.

But do these meaningful lives (which often involve serious child and family suffering) mean that others must resuscitate at similar gestations?

Does it mean that parents who would choose not to resuscitate are "unloving," "less than admirable," etc.?

****
Anon also asks:

"How much disability is *too much*? How much should one individual life be allowed to alter a family dynamic?"

This, to me, gets closer to the point.

When do the burdens of disability such as the pain of the disabled person -- past, present and future, the dislocation of the lives of family members, and the consequent threats to the health of the caregiver, become unacceptable?

I mention the health of the caregiver in this list because research shows that the stain of caring for a disabled child can take up to two decades off the genetically determined lifespan of the parents. It shreds the protective telomeres at the ends of our DNA leaving us open to lethal disease.

There is, then, a trade-off of 10 to 20 years of life on the part of the parent who opts for the resuscitation, NICU treatment, and life-long care of a disabled and/or chronically ill child.

And after the parent dies or is left incapacitated, who cares for the disabled child?

Is our society willing or able to step in and give humane care to our children?

Most important (to me) is the suffering of the child for whom we must make a surrogate decision. Would we personally choose to be kept alive by months/years of intensive medical technology for outcomes involving even more medical suffering and disability?

Each family is going to give different answers to these questions. I hope neonatology (and the commentors to this blog) are tolerant enough to respect all views.

Anonymous said...

Helen wrote: "And after the parent dies or is left incapacitated, who cares for the disabled child?

Is our society willing or able to step in and give humane care to our children?"

These are the questions that most haunt me now that my preemie is a young adult. He requires total care, and I fear a nursing home would just insert a feeding tube and leave him in a bed to languish. He would not even be able to push a call button to summon a nurse.
Our state has closed all but one of the institutions for the developmentally disabled, and private ones are closing as well in favor of community-based group homes which...due to the severity of his disabilities...he would not qualify for. I even doubt that he will qualify for the mental health center's day program for disabled adults, so searching for a solution after he turns 21 is a priority right now.
I won't even go into what we will do should his father or I need to be hospitalized for illness or surgery! We suppose he would just have to stay in the room with us!

Helen Harrison said...

To anonymous 12:16 who said:

"I won't even go into what we will do should his father or I need to be hospitalized for illness or surgery! We suppose he would just have to stay in the room with us!"

This is so difficult! I have some of the same fears. Ed (age 32) lives at home; DH and I are in our 60s.

We have a wonderful woman who comes in to help with Ed 3hours/day, two days a week. She stays with him overnight at times, but she's not getting any younger herself and has health problems of her own. She also doesn't drive or speak English so it would be hard for her to deal for long with the complexities of Ed's care.

What happens when all of us "give out" is something I simply can't contemplate.

Does your son need freqent hospitalization?

If so, do you need to be there with him at all times when he is in the hospital?

Our son, though he is much better now than when he was younger, can't be safely left alone in the hospital. He pulls out his tubes and tries to escape.

If anything goes wrong, he can't explain to anyone else (or even to us, sometimes) what is bothering him (i.e. blocked catheters, problems with an NG tube, infiltrated IVs)

And so we camp out with him in the hospital 24/7. This is very hard on DH and me. Private duty nurses are a possibility, but expensive and unrealiable in our experience.

As to who will care for our son when we're incapacitated/dead, we do have the option of a good group home, but the problem is that Ed (because of sensory issues) hates to be with other disabled people. They can act unpredicatably and be noisy in ways that drive Ed up the wall.

He would *hate* being in a group home, however good it is. It is all we can do to convince to go to daycare/school 4 days a week, and I'm not sure that daycare is going to work out for him much longer.

We are trying to make it possible for him always to live at home, but that involves major resource planning and bringing our daughter into it, which, in turns, limits her options in life.

Anonymous said...

Helen asked: "Does your son need freqent hospitalization?

If so, do you need to be there with him at all times when he is in the hospital?"

So far, it has been infrequent...one pneumonia, two shunt revisions, one life-threatening hemorrhage, so we have been fortunate, but he does need someone there at all times. When he was in PICU last year, I worried that the nurses would not know what to do while we weren't in there. I had to tell them that he CAN go over the bed rails. He CAN pull out IVs even when they are taped. My husband walked in on them once when they were trying to weigh him by using a sling. It terrified him. Then, they said that because he wouldn't take his seizure meds by mouth, they would have to place a tube through his nose! My husband just laughed and told them,"He'll just pull it out!" Somehow, they think if they tape everything, he can't mess with it. He started pulling tubes out when he was an infant in the NICU!

Anonymous said...

Another problem when your fragile preemie adult child is in intensive care: The staff doesn't like parents camping out in the ICU waiting room, but there was just no way that we could even go to a hotel knowing he was conscious but could not communicate with the staff. So we "slept" either in chairs or on the floor while the lights blazed and people came in and out all night long, talking and eating. It was a relief when he was finally moved to a private room and we were allowed to stay with him all the time.

Helen Harrison said...

Anonymous 10:54 said:

"So we "slept" either in chairs or on the floor while the lights blazed and people came in and out all night long, talking and eating. It was a relief when he was finally moved to a private room and we were allowed to stay with him all the time."

Wow! Been there done that!

At least in the adult ICU at UCSF we were allowed to be with Ed -- not entirely comfortably, but at least we had a chair (sometimes 2)for as long as we wanted (except during rounds).

Back on the wards, we were welcomed with open arms because the staff knew they were in way over their heads with him, and that they were way too understaffed to deal with his care.

I have horrible memories, however, of our many earlier stays in the pediatric ICUs where the atmosphere was not as parent-friendly.

It is interesting that when our children get big, the hospital staff is far more willing to let us take over and do the difficult care!

I can't imagine what would happen to our hospitalized preemie children/adults without constant parental presence and advocacy.

Sue said...

Regarding school and sped preemies - many parents do not tell the school their child is a preemie, therefore it would be difficult to know the percentage of preemies using sped services.

To the poster who talked about colleges using outdated material - my daughter is majoring in early childhood education and a recent course included several weeks of study of school-aged preemies. From the questions my daughter asked me, the material was very up-to-date. I believe the text even mentioned that the "catch up by age 2" belief was false.

As an aside, my daughter (a 26 weeker) is not comfortable sharing her story with her classmates or her teacher. The teacher asked the kids to bring in baby pictures for a project, and my daughter is worried that if she brings in a picture she will have to tell her story to everyone. This is so hard for me to understand - I tell her she should be proud of her story and of who she is.

buddhist mama said...

Interesting detail, Sue, about your daughter not wanting to share her preemie story with her elementary school classmates. I wonder what my 26 week twins will do at that age. How old is your daughter? And when did you tell her about her preemie status?

Speaking of which, can we have a post on this topic TPE? When do many of you out there tell your children about their prematurity? Particularly if they would have no other way of knowing---ie. by the time you tell them they no longer have tubes/oxygen monitors/etc. Yet, many, may have sensory issues that they might understand and appreciate better with the knowledge of their prematurity. TPE often mentions this when she talks about Paige being her own advocate and empowered by knowledge.

While I am fully a 'knowledge is power' advocate, at this point, I can also see the other side. I have not spent a lot of time talking to my 3.5 year old twins about their prematurity because I don't want to pathologize them or make them feel bad about themselves.

We did talk it about the day we saw a little baby in the park with a nasal canula---and I chatted with the mom about her daughter's NICU stay. My daughter Tashi kept asking about the canula and that night as she was going to bed, we discussed her prematurity for the first time.

buddhist mama said...

I'd like to comment on Helen's summing up of our discusssion here...
"I think we all agree that everyone, whatever his/her condition or past, present or future suffering leads a "meaningful" life.

But do these meaningful lives (which often involve serious child and family suffering) mean that others must resuscitate at similar gestations?

Does it mean that parents who would choose not to resuscitate are "unloving," "less than admirable," etc.?"

These are the crucial issues---and they directly relate to the exchange between Helen and anonymous at the end of this post. It should be possible to discuss the suffering that both parents and older preemies experience when they are back in the hospital for frequent complications without assuming that this devalues anyone's life---parent or child.

I learned a HUGE amount from this exchange and was able to sympathize with their predicament, although my own experience is so completely different. Perhaps I can't really understand their situation unless my own situation is more similar, but reading their stories is tremendously enlightening and helps me appreciate their perspective. Their stories are not getting reported in the media becuase it is much sexier to talk about success than the daily grind of disability.

This is why I read this blog To hear and learn from stories I'd otherwise never have the chance to know...

The Preemie Experiment said...

buddhist mama wrote: "Speaking of which, can we have a post on this topic TPE? When do many of you out there tell your children about their prematurity?"

Hi Kim,

I have a partially written post on this topic (I actually have so many partially written posts on subjects that I want to cover). Since it has been brought up a few times recently, I will finish it and post it soon. I do have some pretty strong feelings on this one, as I have stated before and also hope that some former preemies will come forward and tell their story to the blog, like they've told me.

Stacy