Thursday, March 29, 2007

Silence

Silence those annoying preemie parents-at all costs!

If they say something that you don't agree with, call them names until they go away!

They must be stopped!

They are doing no good by reporting on the issues their children face. All preemies catch up by age 2, don't you know!

Don't let them question the research we use when talking to potential preemie parents! The issues their children face are not real!

They are up to no good!

90 comments:

Helen Harrison said...

Although we are being harassed, defamed, and threatened at Neonatal Doc's site, we still have a forum here.

It is unfortunate that we cannot be a part of a civilized debate, particularly since, these tactics then allow the docs to say they *only* hear from "grateful" parents.

Arctic frog said...

I agree that it is unfortunate you can't be a part of civilised debate.

Maybe think about what it is that draws people's ire? ER doc went way to far but he was picking up on the feelings of people who feel alienated by certain narof members.

Helen, I know we disagree on choice of language, but just think, choosing your language better can assist in having a civilised debate. If a civilised debate is your aim then why use language that is questionable and likely to insult? As has been said by a number of people, your message is important, your choice of language gets in the way - people see your inflammatory descriptions and then can't see the message as they are blinded(shocked) by the language.

Your refusal to never say sorry also contributes. It is possible to say "I'm sorry that my language is offensive. Phrasing it differently may have been more sensitive but it would have lost some of the impact". Note this makes no attack on another person, does not acuse them of being in denial, etc. It also does not say you were wrong. Yet an apology like this goes a long way.

When I started reading these blogs I was very interested by what you had to say. I saw you show real compassion to prem mums. And I read narof mums talk about what a wonderful support you are.

Yet on these blogs lately this is not coming through at all. Your message is being obscured by some of your tactics. You can still preach the same message with softer language, etc

I am not a prem mum. I knew very little about prem issues prior to reading certain blogs. I am interested and shocked that your info (not really yours but hopefully you know what I mean) is not being put forward more widely. I recall the book i read during pregnancy talking about at 24 weeks 50/50 survival and 20% of survivals having disabilities! Your voice is important and needs to be heard not just by prem mums but by the wider community to change perceptions.

If you truly want civilised debate why not at least consider using a more concilitory tone (w/o changing the facts and message you are reporting). You will appear more reasoned and rationale and less easily dismissed as a "XXX" (fill in the blank).

I don't know whether it was even worth taking the time to type this up or if you will dismiss it out of hand.
Here's the thing. I want debate to continue. As an interested onlooker I wanted to give you my take on how civilised debate (your word) may be better achieved

Anonymous said...

Neohero's blog was not your forum. It was his thoughts...too bad you all forgot that.

I agree that you need a voice too, but isn't that what this blog is for? Why would you say you are silenced? If anything, you silenced him and he was advocating for the debate.

I'm frustrated with humanity today.

Helen Harrison said...

To Arctic Frog:

I don't believe I have to apologize for describing what happened to my own son in my own words, words that were used to *me* after his birth by medical professionals and which were medically accurate.

My words are also the words and sentiments used by other "preemie mums" to describe what they feel happened to their children. They have the right to use this terminology and so do I.

If you or others find this "insulting" then I suggest that you are a bit too eager to take offense.

arctic frog said...

"I don't believe I have to apologize for describing what happened to my own son in my own words, words that were used to *me* after his birth by medical professionals and which were medically accurate."

But when it is pointed out that your tense suggested greater application you could correct your tense.

the continuing tone of your posts confirms my initial post. i'd hoped that my comment would assist in civilised debate.

Helen Harrison said...

To Anon who said:

"I agree that you need a voice too, but isn't that what this blog is for? Why would you say you are silenced? If anything, you silenced him and he was advocating for the debate."

When I came to Neonatal Doc's forum he welcomed me graciously and invited me in. And although we disagree on some issues (and agree on many more)the debate was always civil and adult.

I thought he wanted to have "Balance," which I was trying to provide, but then came the troll.

Believe me, I have never threatened your Neohero. The Troll was the one I wanted to stop. He/she relentlessly used ND's blog to insult me, lie about me and about NAROF, all in a very ominous and threatening tone.

If I even tried to answer this person and address his/her lies, that was seen as egging him/her on. But if I leave the lies unaddressed (like this lawsuit nonsense) then it seems like a tacit admission and the lie keeps being mindlessly repeated by others.

I would also like to point out, that the only person who has actually been threatened on that blog was me -- by ER Doc!

Neonatal doc and I are in communication and he knows that I have *absolutely* no interest in legal action against him.

The troll is another matter, however, but I was thinking more along the lines of a complaint to the AMA -- assuming this person is really a doctor -- or maybe, if necessary, a restraining order.

Helen Harrison said...

My use of the present tense meant that trying to resucitate babies as critically ill at birth (and my son, for all intents and purposes, was dead), thinking that such a child could turn out normal and healthy was unwise. Why is this offensive to you?

Helen Harrison said...

Let me amend my message above to read "was and *is* unwise."

terri w/2 said...

Helen;

Up until Saturday, the blog you speak of was a rather lively forum. Then the "unbalanced" hit -it's interesting that this post occurred RIGHT after there was media coverage of the blog in the Detroit News which talked of possible legal action.

How is it that we've been blogging there for 2.5 or more months, and suddenly NOW parents who are not in complete agreement and awe with saving micropreemies are being personally attacked and blamed for all the woes of the world? Something happened that has nothing to do with parents, however, I feel that parents were an easy mark. A couple of weeks back it was NICU nurses being attacked in the mysteriously disappearing "sick" post.

It's too bad - I did enjoy that blog, but you, Helen were NOT the person who had any part in shutting it down - it was the bully troll and the horrible personal attacks which ND did very little to manage.

Anyway, I sure don't feel silenced by any means. .

The Preemie Experiment said...

Arctic frog said "Helen, I know we disagree on choice of language, but just think, choosing your language better can assist in having a civilised debate."

Arctic Frog, I can see where you are coming from. Helen's language can be construed as extreme to some. But, before anyone passes judgement, please know that she has been "in the trenches" for a very long time. She uses language that was used with her. She does not fabricate her responses. She has been fighting for the rights of families and the rights of preemies for a very long time. I think the biggest problem is that "tone" gets lost in the written word, especially on blogs. Because the subject matter is scary to some, her words are automatically taken as negative. Then, someone responds in a negative way to her comments and the war is on. Even as I am typing this, I am hoping that you (or anyone else) will not take my words the wrong way. I mean no disrespect to anyone.

I will say this though. Without Helen Harrison (and others who have fought along side her in the past), the NICU and the end result would be much scarier than it is today. Her book was the "bible" for us when our daughter was in the NICU. It was given to us by the social worker and it changed the way I felt. I began feeling empowered because I could understand all the medical jargon that was being said around me and not being explained. I proudly admit that I look up to Helen and I will not allow her, or anyone else, to be mistreated on this blog.

My hope for this blog is that we can keep an open line of communication going. Some people have said that they cannot post on their "good" outcome because they feel they will get attacked. I will not allow it so please post away.

Preemies are affected in various ways and degrees. No matter which statistics someone 'believes', they all show varying degrees. There are success stories (and not the very little ones you see on tv)and for that I am thankful. My dream would be that eventually there are many more success stories than there are now.

What fuels my fire is the fact that parents are not always being told the truth.

What is the truth? For starters, the majority of micropreemies do not catch up by age 2.

On another note... I feel that there are good neonatologists out there. I've said this in the past but it bears repeating. The neo that I first encountered-when my water broke at 23.0 weeks, did tell hubby and I that our daughter would have serious issues if born before 26 weeks.

I also believe that there are awesome NICU nurses out there. They are the front lines and do more for our babies than most realize.

I wish all NICU's had wonderful neo's and nurses that would be willing to look at prematurity in the real world and not on paper. Only then could they accurately council new/potential preemie parents on the long term issues related to an early birth.

The Preemie Experiment said...

Anonymous (5:23) said: "Why would you say you are silenced? If anything, you silenced him and he was advocating for the debate."

I (not Helen) used the word "silenced" just as the title of my post. I do not feel silenced though. And, I do not believe Helen or any of us silenced Neonatal Doc. He had many choices on how to handle that troll.

Anonymous said...

I am sorry to see Neo go. It is a good forum to have a free exchange of ideas. Before my son was born I was very naive about what having a child born prematurely entailed. My son was ~650 grams and ~25 weeks. There needs to be more honesty and less "happy sunshine". It isnt about the parents ability to accept their childs ability or disability, it is about the pain and suffering that chold goes through. People like Neo and Shannon should really think about that. Helen, TPE author and others please don't allow yourself to be silenced.

Preemie Mom said...
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Anonymous said...

Preemie Mom,

What is convoluted about Helen's comments ? I've never had trouble reading or understanding them. They seem to speak for a lot of preemie parents I know that struggle to cope with the reality of their lives, in contrast to what they were told by their NICU's. Were you one of the lucky ones whose doctors were extremely frank about what the day to day would be like or is your preemie one of the lucky few that have absolutely no issues (hopefully the later !). I read the NDs blog - it doesn't seem like he has any issues with Helen - it seems like tonight he was quite warm towards her. Isn't that your take too ? It seems like in general, that while there are a variety of different opinions that you read on ND's blog - there really wasn't any hostility until the past few days when the exchange became childish and blisteringly personal and inappropriate - or that's my take on it anyway. I think everyone will feel so much better after a nap and a beverage of their chosing. I truly, truly hope so anyway !

Helen Harrison said...

To preemie mom who said "Stay here, stay off ND's blog"

That's the plan, for the time being.

Please tell us about your preemie.

terri w/2 said...

Preemie Mom - Helen's posts are thoughtful and articulate. Are they difficult for some to hear? Absolutely. However, Helen's work over the years has done more for humane preemie care than anyone in this country.

Go back to ND's "balanced" post from Saturday and start at the beginning when the "troll" suddenly appeared out from under the bridge and began slinging all of his/her cr**. (Perhaps ND FINALLY has deleted it - a lot too late). It wasn't Helen who started the attack. She was professional and tried to engage in patient, meaningful dialogue with this scum despite the horrific attacks being aimed at her. She endured days of endless slanderous, venomous personal attacks. I for one do not know how she was able to maintain her patience throughout. It was nothing short of schoolyard bullying done in an attempt to discredit her.

Preemie Mom said...

PE
If you are going to delete my comments it seems silly to comment about them.
I wrote what I think is valid and whether or not it was taken well by Helen thats her problem.
I would love to talk about my preemie but its late and I just dont understand why my comment had been taken down. Most likey because I have a dissenting opinion.
If you want to talk about my comment then put it back up.

buddhist mama said...

Thank you PE for addressing the silence issue.

I am angry that one person can take down the quality of a blog and effectively force it into silence.

But I am also appalled by the defeaning Silence that many of my and others (ie. Helen's) posts have received in the last few days on Neo from people who must know something about the medical issues being discussed (steriods, pain, history of premature baby exhibits). The very fact that any substantial points I and others were trying to make kept getting subverted and/or ignored, is testimony to the success of troll and his supporters.

This is not about disagreement. As PE says, I like debate and disagreement. And there are plenty of people that disagree with helen, who she responds to in courteous fashion.

This is about what one troll can do to eliminate debate, to silence discussion. On Neo's blog, Sarabeth suggested: "stop feeding the troll". But if nobody corrects his misinformation it stays out there and people walk away confused. This is precisely his intent. So I will not be silenced and I will continue to correct his assumptions even if this means feeding his oversized ego. And I know I am making an assumption about gender, but I feel he is a he, for reasons I can't quite identify. I'm prepared to admit I am wrong on that one.

When the troll came out on Neo's blog, he moved from childless slander against my posts to far more vicious verbal violence against Helen. This was the real problem, not the disagreements that will continue to be part of every blog.

What I will continue to object to was the troll's repeated suggestion that he alone could read the medical literature and non-doctors could not. It was clear he was neither reading the literature nor that knowledgeable as he made some basic errors about the findings regarding antenatal steriods, breech births, etc. I've been reading this literature for year as a medical anthropologist, and as others have noted, it does not take a PhD or an MD to understand the abstracts.

What is the take away message? Keep blogging becuase to do otherwise is to let the trolls win.

Aidan's mom said...

I really see both sides to this. I have been involved in one way or another in medicine for most of my career. I think having both sides presented is important in coming to a good decision. I saw it daily with doctors I spoke with. I gained a lot of credibility as a pharma rep by giving a balanced view....never promoting my drug as right for everyone.

I think the evidence that needs to be presented about preemie outcomes is exceedingly important. Looking back I wish we had been given more of the neurologic stuff just to have in our back pocket in case we needed it. I really didn't know what a grade 3 or 4 bleed might mean for a child or a pvl for that matter. Gratefully we didn't have to know. My DS didn't have a bleed or PVL. But that doesn't mean I shouldn't have known. What if we had had to confront it?

So let me say again...what you say is vitally important.

But I must say...being a preemie mom can be scary and challenging. When I see some of the moms with more challenges in the beginning of their journey I understand how certain language could set off a hot button.

I don't deny the correctness of the verbiage....but perhaps in an audience of preemie moms whose decision has been made already...a little more sensitivity might be in order. It is not as if these women are in a position to say..."Yup, massive grade 4 bleed with hydrocephalus...let's stop heroic measures." Their kids are here and they are just trying their best to love them the way they are.

I know you will likely disagree with me...but it is just how I see it.

I talk to a lot of new preemie moms...I am on a parent board at our hospital's NICU. These parents are literally treading water. I really try to tailor the tone of my discussion with each parent based on what I think they can handle at that point.

I am most certainly not trying to silence you...not by any stretch. Just asking if maybe there might be a way where facts can be presented while still taking into account the fragility of a young preemie mom?

Respectfully,

Lori

Aidan's mom said...
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Anonymous said...
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Lisa - Mum to Mitch & Harry said...
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Lisa - Mum to Mitch & Harry said...

I must say that I find the venomous posts and aggressive stance of many respondents on this blog and ND's blog interesting to say the least. I have long noted and have commented on in the past, that most people I have come across face to face are (generally) inoffensive and just trying to get along in the world. BUT get some of them tapping away anonymously on a computer keyboard and they become offensive and at the same time easily offended.

The ability to communicate effectively is much more difficult with the written word. If I say something offensive to you face to face - then I can instantly read your body language and modify my speech if I wish. Whereas part of the difficulty with the email/ computer is the ability to fire off an angry response within a few seconds without taking a breathe to think about how it will be interpreted by others.

I agree that threats of law suits or violence are NOT acceptable...BUT can't we just ignore rude behaviour or messages we don't like? Besides life is too short to spend it arguing.

As the famous Dilbert says "never argue with an idiot. They only bring you down to their level and win with experience!"

Just my thoughts...
Lisa
mum to Mitch & Harry

Arctic frog said...

TPE(Stacy?) - you seem much more measured than Helen and your approach does you credit.

You make valid points and your post does not scream "I'm always right"

This is so helpful for fostering debate - especially civilised debate.

I do not have a prem child but my child did spend time in NICU - it was a great NICU and it seems as if they've adopted many of Helen's points re parent focussed care, etc. I have no argument with her role and significance. I've said this a number of times (yet I still seem to be rejected as having an anti-Helen agenda, or as having been offended). Truthfully, I'm not sure why I bother - this doesn't affect me. Its something I stumbled on and was fascinated by. I was amazed by the message Helen and you and others were saying and how its not what is normally told. I thought highly of Helen and was surprised by comments alluding to how she polarised people. And then as I kept observing I saw why. And it became hard for me to remember my first impression of her (informed, helpful, clear, questioning, supportive of prem mums) as all I could see was the aspects of "always being right, bull in china shop, etc". And I thought what a shame and I wanted her to know. Why? Not sure. I'm wasting my time and really need to stop posting about this. I just think her manner is a shame as it alienates people and makes her seem more extreme than she may be (I take your point re tone and the written word) and leads people to reject the message at a cost to countless babies born on the margins of viabilty no doubt.

In my experience people are reluctant to enter a dialogue with individuals who are always right and never concede that they could have done something in a different way.

I appreciate your note and your tone.
Thanks.

I think I'll bow out now. I've said my piece, I need to move on.
I'll go back to lurking I think!

Chris and Vic said...

One of the last insults hurled by troll, and the most offensive to me, personally, was that parents of ex-preemies are whining because they have sub-standard parenting skills and/or coping skills.

I have looked deep into my own soul on this one, believe me.
(I know, it is silly to let a troll get to you . . . in this case, the issue got to me.)

I freely admit that it is taking me years and years to adapt my own parenting skills (having raised 5 neurotypical kids before I adopted Vic) to suit a child with disabilties. I have learned and done things I never did in my first 25 years as a parent. I have been more and less successful over these 12 years with Vic (he will be 12 next month). I have ebbed and flowed. I have a support system. Vic hasn't had any hospitalizations since he was 3! And he has had few shunt malfunctions these last 2 years, whereas he had many, even 3 per day during the time when we think he had rotavirus, at age 7.

At this age, behaviors are the next big hurdle, and again, I am honing my parenting skills and coping skills to try to meet the challenge.

The only point I really want to make is that I do this with some whining, but with great humility. My book-learning doesn't necessarily serve me in figuring all this out. It is so visceral, to figure all this out, like complicated footwork in a dance. It is so emotional, and my/our egos are tied up in it; and the success/failure rate can tip one way or another on an hourly basis.

The summer will, and always has been, a challenge--to keep my child focused and occupied, so that he doesn't just do repetitive, stereotypic behaviors all day. To encourage his getting along with my grandchild, age 6, who is with me daily. To have patience with continually re-directing, to cultivate creativity in myself to accomplish all this redirection (I repeat as much as Vic does, if I am not careful!!!).

This is the hardest thing I have ever done, raising this child. I am not whining. I am just stating a fact.

And I know that every preemie parent who reads this will KNOW what I mean.
Chris and Vic

kp said...

Preemie mom wonders why her post was deleted.

I believe I can speak for any and all who hapened to read it that it was deleted not because she had a different opinion.

It was because of her nasty insults to a person.

There is a difference, as I wrote on ND's blog.

A difference of opinion:

"I think your position is completely wrong. Here's why I disagree with you completely."

A personal attack:

"You have no life! You're old! If I were you I wouldn't even get out of bed in the morning!"

Differences of opinion lead to intelligent discussion.

Personal attacks sideline discussion.

I'd like to thank PE for policing her blog so well, and ensuring that discussion is welcome from all sides, but that personal attacks are not.

Astrid van Woerkom said...

Why is it always some people who claim that all preemies do fine, and some others who claim that preemies will have severe disabilities and lead miserable lives, and the groups keep bashing each other? Preemies do great because they hav eno significant disabilities, or they do horrible cause they have severe disabilities and can't live independently. I have significant disabilities and can't live fully independently, but that doesn't make me a "bad outcome". I am in college and have a high IQ, but that doesn't make me "caught up". I am honest about the implications of my disabilities, and I link to this blog because it shows honest information about the possible difficulties faced by preemies, but that doesn't devalue me as a former preemie.

terri w/2 said...

Astrid - it's not just about disabilities, it's about suffering both short and long-term, which many of our preemies have. This is what is often ignored in the debates. Of course we know that people with disabilities can live productive and happy lives. .

The Preemie Experiment said...

Astrid wrote: "I am honest about the implications of my disabilities, and I link to this blog because it shows honest information about the possible difficulties faced by preemies, but that doesn't devalue me as a former preemie."

Hi Astrid. Thank you for posting here. I do believe that your words are very important to helping parents understand their children. Before I "met" you (it's been a few years hasn't it?) I remember Sarah helping me with Paige. I wanted to make sure I was talking to Paige in a way as to prepare her for her future. Sarah really helped and I think that both of your experiences could help many more preemie parents.

And, yes, it does not devalue you as a former preemie!

Speaking out, whether it be from parents of preemies or preemies themselves, is important. I believe, with no ill intent, that by speaking out we all can make it better for future preemies and their families.

Even the smallest preemie issue should be discussed. In order to better the future care of little ones, the medical community needs to be aware of all aspects related to prematurity. I believe it can start here.

If, by speaking out, it means a future preemie can live without a fine motor delay (for example), it will all be worth it. What about the bigger preemie issues? Wouldn't it be nice if they didn't suffer from those either?

It's an uphill battle but it has to start somewhere. There are neo's out there who want this information. Some didn't realize the long term issues were being experienced by so many preemies.

I'm in this for the long haul. I hope you (Astrid) and everyone else will join me on this journey. Helen (and a few others) have done more than their share. Now it's up to the rest of us to help and do ours.

With admiration and gratitude,

Stacy

23wktwins'mommy said...

This is a good time to chime in. I understand that a large part of the important mission is to educate parents about possible long term issues related to prematurity. I also understand parental choice is extremely important.
Saying that, if, at the end of the day, we still come to the conclusion that NO ONE knows for sure how an individual preemie will fare in the long run, as parents, what do we really do with all of the research?
Do you think that if parents knew all of the POSSIBLE affects of prematurity that it would drastically change how many people opt to try and save their babies? (that's a serious question). Maybe I'm mistaken, and perhaps biased because I chose to save mine, but I will never forget how many times I was told that NO ONE knows. Medical research and statistics are just that to parents who want their children to survive. You can go from lower than average IQ and eye problems, to severe brain injury. The problem is, again, there is just no telling when you make that fateful decision to choose resuscitation. Yes, you should have ongoing conversations with the neonatologists about treatment if you do decide to resuscitate, however, a lot of times there is still no telling what the future holds.
I think it is extremely important that parents are informed, and given significant control over medical decisions for their children. However, I think many parents would still opt to try to save their child's life. Even if hypothetically speaking you say you wouldn't resuscitate, say before 26 weeks, I'd argue it is a lot easier said than done. When you give birth that early, and you have a team waiting and prepared to save your child's life, simply holding your baby while he/she is still breathing and watching that life leave his/her body is a pain I thankfully never had to experience.
I can't even imagine life without my children, and I will still post pictures and be proud of them no matter what the future holds.
Will life be harder because of their early arrival? It most certainly will. Will it be financially, emotionally, and physically draining? I'm sure it will.
But there is no Dr, no researcher, no one who can tell me what the future will bring. And even if things look bleak according to certain studies, as a parent, had you opted not to resuscitate, I can't imagine you would be able to live free of "what ifs." It would probably be easier to say "oh my child would have had a miserable life. Look at these studies." Well, the fact is, no one knows that, and although I am fully for parental choice, I just think sometimes it is a lot easier for people to talk about what they would do as opposed to actually doing it.
And to those who are living with a former preemie and experiencing some of the more severe difficulties, I would hope that, although life is hard and painful, you are still very thankful you have your child. Maybe this is an unfair assumption, and if it's incorrect I apologize, and I would like to hear what you have to say.
I just imagine that no matter what issues my children face, I would never wish they weren't here, or wish I had just let them die. I didn't have a crystal ball and no one else did. No one could tell me if they would have signicant, moderate, or minimal issues, and I wasn't going to try and guess. Yes, the odds are against them, and maybe it's a chance some wouldn't dare take. But this isn't a game of Russian roulette, these are people's children.

Chris and Vic said...

I realize this thread is about "Silence," not "Suffering," and that we have recently had a lively discussion about suffering, thanks to Unintelligent Design (Clark Bartram's blogspot)---However . . .
When we don't know how much our children suffer because they cannot tell us (Teri's daughter who is severely involved, Ed Harrison, my Vic, who seems to just have generalized panic reactions), then what? What do we do about this; and how do we feel about this; and what support is there for this kind of suffering?
Are pain meds the answer? Is "reasoning" the answer? Our little kids (including those still in the NICU, and recent NICU graduates) and our kids with cognitive disabilities and kids who are unable to communicate reliably . . . we cannot reason with them; nor can we know if calm talking, explaining, holding, restraining, containing, rocking, singing, Sweet-Ease syrup, anti-anxiety meds, Tylenol, or whatever has any effect.

Mostly, I do your favorite interventions to calm my child, if not ease the pain or anxiety, and WAIT for it all to pass. (In fact, the only "reasoning" I do with Vic, whose ability to reason is VERY poor, is "It just hurts for a little while--then it is over.")

Others say "Oh, mom is here with you--she will not leave you. Try not to worry" in the belief that a supportive person's presence is the key . . .

Does anybody else want to talk about this? Does anybody else have any wisdom to offer?

Thanks for the breaking of the silence. Let's move on and go on, learning from one another and supporting one another.
Chris and Vic

The Preemie Experiment said...

23wktwins'mommy wrote: "Saying that, if, at the end of the day, we still come to the conclusion that NO ONE knows for sure how an individual preemie will fare in the long run, as parents, what do we really do with all of the research?"

We keep it in our back pocket and hope for the best. If anything of concern creeps up, you have the knowledge to recognize it. Some of us parents are coming from the age where pediatricians and other specialists denied that prematurity causes any issues. Our kids had been put through unnecessary tests only to find out that it was due to something in the NICU or a direct result of an early birth. When my daughter was diagnosed with epilepsy, I was the only one who was not shocked. I knew it was a possibility. I even knew it that it was common around the age of 4 or 5 (which is when she was diagnosed). The same was true with CP, reflux, etc. I was ready.

"Do you think that if parents knew all of the POSSIBLE affects of prematurity that it would drastically change how many people opt to try and save their babies? (that's a serious question). Maybe I'm mistaken, and perhaps biased because I chose to save mine,"

I do believe that some people would choose not to resuscitate. I have already seen it. I am not, by any means, saying this is an easy decision for all. Not by far. I made this decision for my son if he would have been born extremely early. I am thankful that he was only a month early.

I chose to save my daughter. I was told about the possible outcomes by the first neo. I didn't believe it. The only micropreemies I had seen were in the news and all doing fine (as infants).

I do believe that the public needs to know both sides. And, not all issues are severe but they need to be discussed.

"I can't even imagine life without my children, and I will still post pictures and be proud of them no matter what the future holds."

I am proud of my daughter too. She is the light of my life. She fights hard every day and I hope she never gives up! I post pictures on her Caringbridge site and tell of all the great things she is doing. I teach her to be proud of herself and understand her differences. She knows all about her early birth. You should hear to speak to people about what it means to her! She will tell anyone who will listen (as long as she is not in sensory overload) that she hopes doctors figure out a way to "save preemies without hurting them." Those are her words-not mine.

23wktwins'mommy said...

Preemie Experiment,
Thanks so much for your response. It gives me a much clearer picture of what you believe in.
I think revealing the other side of prematurity (not the "everything is fine" stories out there) is SO important.

Astrid van Woerkom said...

23wktwins'mommy,
You are right about stats and medical research not saying anything about an individual child (unless they were in the study, in which case there is no predictive value anymore). That's why I have a problem with "preemies will catch up by age 2" language as well as "preemies will have this or that disability" statements--some preemies catch up, and many do not. Parents need to be informed about this. This might be related to decisions about resuscitation (many parents who advocate informing parents about negative stats, also advocate parents deciding not to resuscitate), but these are at least partly separate discussions. I am fully in favour of informing mparents honestly. That's not because I don't want disabled preemies to live--I have very strong opinions on ethics and these are usually opposite from many out here--, but because I know what it is like to be thought of as "caught up" while I'm clearly not. I am blind and this was recognized at age 5 months (not by the doctor, but by my father, by the way), but in some ways that is not my most significant disability. My behavioral/communicative issues, very recently labeled ASD, are sometimes far more significant. Educating the public, and professionals in particular, about possible preemie disabilities, will hopefully help them recognize common preemie problems that are now usually trivialized. This in turn will hopefully ease these children's and families' access to services/support/treatment, as to improve their lives. However, in order to stop the "fine fine" litanny, docs will have to see that "preemies catch up by age 2" is about the worst myth still prevailing in neonatology. Fewer resuscitations may be one consequence, as it is here in the Netherlands (preemies born before 25 weeks are not resuscitated as a rule), but hopefully better support will, too. In my view, it isn't so much bout not having disabled preemies, but more about easing the quality of life of *all* former preemies.

Helen Harrison said...

To 23wktwins'mommy who asked:

"Do you think that if parents knew all of the POSSIBLE affects of prematurity that it would drastically change how many people opt to try and save their babies? (that's a serious question)."

Yes, apparently it does make a difference, according to physicians who have tried to improve their process of informed consent with families experiencing high risk pregnancies. Having facts and options matters, not only to parents of preemies, but also to patients themselves at all points in the life-span.

When elderly patients are given really good information about proposed treatments and expected outcomes of various life-sustaining therapies, many do not choose treatments that may subject them to severe pain, or further disability, especially mental impairment. Many choose no treatment, hastening or guaranteeing their death, rather than endure the intense suffering invovled with treatment.

Among my friends, the ones most likely to opt for comfort care rather than NICU care for extremely preterm babies have consistently been those with medical educations -- the ones who, presumably, know the most.

However, there are always exceptions. I know of neonatologists who have decided on full scale resuscitation and treatment for their micropreemies, and I honor their decisions. But most (according to their own surveys) do not want it for their children.

I don't care which way people go in their treatment decisions, but I do think that everyone should go into these situations with as much information as possible.

Almost all of us here have living children whether by our own choices or by choices made by others. And it is important for us to understand our children and care for them as best we can. To do this we need to be fully informed.

Several of the bloggers here are former preemies themselves. I have found that many former preemies are actually relieved to know that there are physical explanations for for the problems of prematurity that they are experiencing.

I think all of us, as medical consumers, have reasons to urge the medical community to be candid with us about the outcomes of preterm infants, and to conduct more and better research to fill in the gaps in their knowledge.

We would all like to hope that, with an honest understanding of the problems, we can move ahead to their prevention, treatment,and cure.

In the meantime, acknowledgment of the difficulties so many of us are currently experiencing would be a good beginning.

Helen Harrison said...

It is beginning to look more and more like our babies' brains are damaged both by unrelieved pain and by pain relief itself.

I just saw the following AP News story:

http://news.aol.com/topnews/articles/_a/anesthesia-risk-for-children-worries/n20070329183309990001

Some excerpts:

"numerous animal studies find that a majority of the drugs typically used to knock out children before surgery do kill brain cells in young rats, mice and - preliminary results suggest - rhesus monkeys"

"Experiments on laboratory rats and other animals have shown that the drugs can lead to subtle but prolonged changes in behavior, including memory and learning impairments, according to a study published by FDA scientists this month in the journal Anesthesia & Analgesia."

"The animal studies suggest young animals are most susceptible to the drugs during the period of rapid growth of the brain. In humans, that period begins before birth, in the third trimester, and extends to about age 3."

Joan McKenty said...

Perhaps not an appropriate response but I had to laugh when I read arctic frog describe Helen as having an attitude that screams "I'm always right."

The very interesting and ironic fact is that Helen is CITING RESULTS OF MEDICAL RESEARCH. In addition to sharing her own experience and the experiences of other preemie parents as they have been expressed to her, she is primarily providing information from medically peer-reviewed research studies.

And she has read and reviewed just about every study out there related to children born prematurely. She has translated that information into layman's terms - information that would be otherwise obscured by medicalese - complex scientific and medical language.

Helen has put THEIR LANGUAGE, THEIR RESEARCH AND THEIR CONCLUSIONS into words that we can understand.

She is communicating information to us from scientific and medical research that a majority of people would not have access to for a number of reasons.

One reason is that this information is not made public by our media. Another reason is that many people do not have the medical and scientific vocabulary or understanding to be able to read and understand the medical literature and research OR to understand the implications of that research for us and our children.

The language of a profession is a way of controlling and maintaining power. Cracking the code of that language cracks the foundations of that control. Helen is empowering us by decoding that language.

Joan McKenty

terri w/2 said...

No kidding, Joan. ."Helen has put THEIR LANGUAGE, THEIR RESEARCH AND THEIR CONCLUSIONS into words that we can understand."

And. .Helen speaks Russian too! Wow. .

As I've said before "I wanna be Helen when I grow up"

Helen Harrison said...

Bolshoye tebye Spasibo, Terriw/2!

Lori said...

PE- This seemed like the most appropriate place to let you know I am bowing out. I know I could have slipped away quietly, but I did want you to know I have always appreciated your sensitivity and kindness toward my loss, and my place in this discussion. However, it is increasingly clear there really is no place for me in this ongoing discussion, and least not one that is going to do my mental health any good. Right or wrong, my 23 weekers are gone, and the only path to peace for me is to move toward acceptance.

I wish you, and all parents of surviving preemies, all the best. I certainly hope your efforts will lead to improved care for the tiniest among us, and greater support for their families as they grow into adulthood. Good luck to you!

Arctic Frog- For what it's worth, and if you are still reading, I agree with everything you said, and the way in which you said it. Humility, compassion and grace really do go a long way in this world. Intellect and reason are not everything, no matter how rational and "right" they might seem.

Anonymous said...

Lori, I agree with you and will be sorry not to have your voice here. I totally understand and support your decision.

Sometimes the throwing out of facts, especially "others" facts is just another way to say, "I am right!". What is missing is the heart. I think all patients in any situation should have the best possible known facts that exist. But, like 23weeker mom said, it is also important to admit when something is not known. Our Neo did a great job of that and it helped and still helps and gives me hope. This discussion without the hope and the heart can be so unproductive and destructive to already wounded psyches of parents who suffer from post traumatic stress from surviving their preemie experience. I am one of those.

To PE - it's great to hear you say something that you like about your daughter. I realize you have had it very, very tough. But honestly, I read your posts and think you are not happy that she is with you. It's great to hear that you find joy in her and that she is the love of your life. I think it's great that you are a researcher and I am sure her best and most fierce advocate for which she is a very lucky kid. I think presenting that side of your life would help present a truer picture.

I agree with having better information for parents and that the media is out of control with it's false miracles and lack of follow up.

Balance in the discussion should still include the fact that not all preemie parents, even those of severly disabled former preemies, are miserable or unhappy or suffering. That is just not the case. There is so much joy mixed in with the slog of it. I have found that focusing on the joy lessons the slog and helps me accept my situation with a clear head that is open to the gifts of the universe. Being down about it all the time would limit all of that.

PE I have been reading your blog since it began and have learned a lot but must bow out as well.

Good luck to all.

Helen Harrison said...

To Lori:

I'm saddened that you are leaving, and I'm particularly saddened to learn that my words, describing my son's birth and treatment, have added to your pain.

There have been repeated calls among some of you for me to "recant" or apologize for my words.

I can't, in good conscience, do that.

It is how I feel and how many other mothers of preemies have also described it. This included my own mother, who, because of a uterine malformation, lost one baby for every baby she carried to term: 8 pregnancies -- 4 miscarriages/fetal losses and 4 healthy term babies.

My wording in no way implies, as some seem to believe, that I don't deeply love my son, or that I am making light of life and death decisions, or that I don't think my son is "worth" it.

For example, if someone were to come to me and say, "Your child is disabled and we want to kill him" they would do so over my dead body. However, if we were back at "square one" with him, I would beg the doctors to let him die in my arms rather than hand him over to what was done to him in the NICU and beyond.

It is because I love my son deeply, and did from the happy moment when I first learned I was pregnant, that it is so unbearable to watch him suffer. And, yes, his conditions do involve intense suffering.

It is all made much, much worse by his inability to understand what is happening to him. To him (and to me) it so often feels like random torture.

If I use harsh words to describe our lives, it is because we continue to cope with a very harsh reality.

I sincerely hope that in the days and years ahead you are able to find peace and come to terms with your sorrow. I wish you strength and peace.

Sincerely,

Helen Harrison

Preemie Mom said...

"There have been repeated calls among some of you for me to "recant" or apologize for my words.

I can't, in good conscience, do that." Helen Harrison

Geez Helen cant you take a break just for one night? You speak like you are the end all be all of preemie information. I would love to know your educational background and what makes you an authority? Please stop and step back from your self and listen to what people have to say about the way you come off. Seriously.

And whoever said that Helen breaks down all the scientific talk in the studies and makes them readable for us lesser beings (my words there, you are totally selling yourself short. Medical studies are not that hard to understand. It doesnt take a college degree to read and make sense of them.
Sorry Helen but in my mind you are not an authority on anything except spouting off and telling people that their preemies are going to have disablities. I think you are bitter and angry that your life didnt turn out the way you wanted. Or maybe you blame yourself for causing the severe disabilty of your son. Which is total nonsense.

So PE go ahead and delete my comments if you want. I just think that Helen needs to learn to play nice and think of someone other than herself. It seems to me that she does a lot of backpedaling when she doesnt like what is said about her. Maybe the truth hurts......

Lori said...

Well, here I still am. I checked back in because I became concerned that my words, and my farewell, might be misconstrued. And indeed it has.

First and foremost, I am bowing out of this discussion because it is not good for me personally. This has everything to do with me, and the way I need to assimilate my loss and proceed with my life. If anyone, for whatever reason, would like to understand my motivation better you can read my post on my own blog titled, "Acceptance vs. Action." It discusses in detail how I came to the realization that participating in these discussions is no longer productive for me.

As far as my comment to arctic frog, I simply appreciated the manner in which he/she expressed his/her disagreement with the tone that can sometimes be used by Helen, and others associated with Narof. I am a great believer in choosing our words with care, which is precisely why I came back to clarify my own message. I have not felt personally offended by Helen or anyone else here, and no one's words have caused me to leave.

Helen, I have great respect for the passion and longevity you have had for neonatology and the rights of families. And if I have never expressed my heartfelt sympathy for the trauma both you and your son suffered during and since his birth, please let me say it now. I would never question your right to speak of your own reality, and your own truth, in whatever way feels right to you. I believe everyone has that right.

My reality, my truth, is I am not raising preemies. I do not have a disabled child, and my children never spent a minute in the NICU. I know what it means to hold your micropreemies as they die, but I didn't do so out of a conscious "choice" for comfort care. So... there just isn't much I can say here that is of value, and the discussions often only lead me to question and regret a reality that cannot be changed.

Peace to all. Be kind.

Helen Harrison said...

To Preemie Mom who asked " I would love to know your educational background and what makes you an authority?"

I have published in _Pediatrics_, _The New England Journal of Medicine_, _JAMA_, _Journal of Perinatology_, _Journal of Clinical Ethics_, _Birth_, and much more.

The National Perinatal Society, in 2002, gave me their "National Award for Outstanding Contribution to Maternal& Child Health."

I have been asked to give Grand Rounds presentations at numerous hospitals in the US and abroad, and have been a part of an international research team (with a grant from NIH)to look at school age outcomes of preemies. (Many publications have resulted.)

I have written a book on prematurity (published by St. Martin's Press) and am working on an update.

*Someone* apparently thinks I have something to say.

And I'll be glad to post my entire CV here if you'd like.

I did premed courses (after an undergrad and grad major in Slavic languages and linguistics), but became pregnant with my son before I could apply to med school.

Previously, I worked as a medic in a community clinic.

Since then, I have "home-schooled" with some of the best, including *my* mentor and dearest friend, Dr. William Silverman, the "father" of neonatology.

I do not, however, claim to be an "authority" -- only, at best, a conduit. There is so much research (news *you* can use) that isn't otherwise easily available to parents.

I want to let parents who want this information to know about it. They can interpret it as they wish.

And will you tell us about your credentials?

Preemie Mom said...

I was not attacking your credentials because I simply did not know them. You shouldnt be so defensive.

You are very defensive and I dont quite understand why. I would give your information a look but honestly the way you convey it is quite abrupt. Which turns me off. I think a lot of people feel that way and I am trying to help you understand that not every new Mom or older Mom wants to be inundated with statistics that they may or may not understand.


My credentials. I have a BA and have worked in the medical field for a very long time. I am a Mom to a preemie. I seem to be a lot younger than you and do respect your experience. (In no way am I saying that you are old. I had just read on another blog your age and didnt realize that you have been at this preemie thing for a long time.)
But I do not respect the way you jump on every preemie Mom and immediately start spouting out that all preemies have bad outcomes. I dont always believe what I am told by medical professinals. I know better and that is my experience. But that being said, there is nothing wrong with someone, not in the medical field. who believes what their doctors are telling them about their preemie. Most people hear only what they want to hear. Some dont understand what can happen. Some do and if they ignore what is being said, because its not so pleasant, then they are believing in HOPE! If people dont have hope then the world would die. They would die. Life as we know it would cease to exist.

So if you want to think of me as someone who is putting her head in the sand and hoping and praying that my preemie's life will be normal that's fine. I have hope.

Many children face harsh realities. Such as kids with cancer with long courses of chemo and radiation and endless sticks and pokes, surgery, radiological scans, bad news, and not a very good life while going through treatment. Most do survive and there are programs that address late effects from their treatments, which some have some severe impairments from treatment many years later. This is what I know. I also know that those Mothers faced with all the cancer survivor stats and realities of their everyday lives, would not change anything about their children. Yes all the kids have a rough road, some are experimented on with clinical trials that sometimes work but are risky, some are developmentally and emotionally delayed for the rest of their lives. All the Mothers live with the fear that it will return and claim their child. But they have hope that their child will come out unscathed.

So I do understand where you are coming from but I do think that you can catch more flies with honey than you do vinegar.

Claire said...

The commenters who are happy to have Helen Harrison interpret statistics for them should perhaps think again. Statistics are NUMBERS ON A PAGE. They can be interpreted in a variety of ways depending on the bias of the interpreter. I was fairly interested (but not too convinced) recently when I read that the odds of my daughter being the way she is were 1 in 3600. Or perhaps, in a different study, 1 in 1200. Unfortunately, she was the one. Rather good odds, don't you think? and absolutely meaningless. It isn't for nothing that people advertising "miracle" diets or expensive face creams are fond of quoting statistics. The regrettably abusive Anon from elsewhere was actually asking some good questions about Helen Harrison's equally selective readings of the research. Present statistics with enough (real or imagined) authority, and you can "prove" some fairly dubious claims.

The Preemie Experiment said...

Preemie Mom wrote: "I was not attacking your credentials because I simply did not know them. You shouldnt be so defensive."

PM, It's all about tone. This is a good example of what I was referring to earlier. Earlier you wrote the following to Helen...

"Geez Helen cant you take a break just for one night? You speak like you are the end all be all of preemie information. I would love to know your educational background and what makes you an authority?"

When I first read what you wrote I immediately thought that your tone towards Helen was very negative. Then you ask Helen why she is so defensive? I would have been defensive too.

If you were honestly curious about Helen's credentials, you could have simply asked her instead of adding words like "You speak like you are the end all be all of preemie information."

The Preemie Experiment said...

Lori,

My heart is with you. Not a day goes by that I don't think of you and your little ones.

I am an avid reader of your blog. I will refrain from commenting there to honor your wishes.

My email door is always open.

Hugs,

Stacy

terri w/2 said...

Preemie Mom - it is interesting that you are addressing the issue of parents of children with cancer in comparison to parents of children who are preterm.

Several years back, a study surfaced about the tremendous affect that cancer treatment had on families - when studied, many parents were found to have post-traumatic stress disorder. Isn't it interesting that our children who spend months in intensive care, who are poked and experimented on and often leave there with on-going significant medical issues. .it appears no one thinks that PTSD might be a *huge* issue for us as well? Anyway, just food for thought. .

I would have to agree with the poster above - your language is quite strong, but perhaps it's that it's more the message being presented, rather than the presenter?

Back when my girls were 2 years old, I was being interviewed locally for some work I was doing in supporting parents of preemies. I look back now at those interviews and think - wow, where the heck was MY head at, with regard to my kids? I had one that we all knew was really in tough shape and would never, ever live independently. .however, when I read things I said about my OTHER daughter - she's developing normally, very bright, we're so lucky she's doing well. .I was so deep in denial. Truth is, she wasn't walking, she was very demanding emotionally, in comparison to same age full-term peers, she was really not doing well at all. However, in doing my brave face to the world, it somehow allowed me time to process.

Turns out, my second daughter too, is significantly disabled - mild/mod CP, aspergers and NLD. She will never live independently, and has continuous bouts with mental health issues.

I think that is sometimes really tough for parents to hear early on - we've been so conditioned to the miracle baby stories, that of course that IS what is going to happen to our children too. And since our kids aren't "born with" problems, it sometimes takes years for the shoe to drop, but indeed for most of us with micropreemies, the shoe does indeed drop. Do we have hope, and are we allowed to hope - certainly.

In my case though, my not learning about my child's issues sooner delayed help. I believe that Helen as well as other parents on this list believe that parents should be well-informed - not just in decision-making in the NICU, but after. Knowing that these issues are significant among preemie survivors, at the very least, alerts parents to the possibility, and help for the child will not be delayed. My denial was paralyzing for my daughter. She was suffering, and I thought she was doing wonderfully.

Anyway, preemie mom - have hope! But keep yourself informed as to the possibilities too, for the sake of your kids.

T

The Preemie Experiment said...

Anonymous wrote: "To PE - it's great to hear you say something that you like about your daughter. I realize you have had it very, very tough. But honestly, I read your posts and think you are not happy that she is with you."

When I started this blog I was torn as to the direction I wanted it to take. I love talking about my daughter and already have a caringbridge site set up to do that (have had it for almost 5 years).

My main focus of the blog is going to be talking about all aspects of prematurity. It is a passion for me. I am kept going by the emails that I get from parents saying they thought they were alone.

But, you are right. I should add more about my love for my daughter.

The love for my daughter goes beyond words. She is my source of strength at times. There is a song that Josh Groban sings called "You Raise Me Up". I shed tears every time I hear that song (which is quite often since my daughter is obsessed with him). It's my Paige that raises me up.

There are days when it is hard to express my love for her. It never goes away but some days I am crushed by the weight of her issues. When you have to spend an entire day making sure she is not harming herlsef, it can be draining. When those days come 2 or 3 in a row, well... I'm spent.

I have never given up on my daughter. Not once. From day one I have devoted my life to making sure she has the best care, the best docs (don't even get me started on how many neurologists we have gone through), the best therapies, the best teachers, etc.

I have said this before... I can't imagine what my life would be like without her but I honestly can't imagine what life will be like *for* her.

Joan McKenty said...

Claire said...

"The commenters who are happy to have Helen Harrison interpret statistics for them should perhaps think again. Statistics are NUMBERS ON A PAGE. They can be interpreted in a variety of ways depending on the bias of the interpreter."

You are absolutely right, Claire, as is Helen, which is why she looks deeper into those statistics and behind the smoke and mirrors they may present. An excerpt from a chapter she wrote, addressing this very issue,and published in "Infant Development and Risk" 2nd Edition eds Widerstrom et al., Paul Brookes Publishing Co., 1997, can be found at:

http://www.comeunity.com/premature/
research/helen-followup.html

Also, Preemie Mom said: "I think a lot of people feel that way and I am trying to help you understand that not every new Mom or older Mom wants to be inundated with statistics that they may or may not understand."

Helen IS aware of how distressing this news is to new preemie parents. She also states in the above referenced article:

"One of my challenges in rewriting The Premature Baby Book (which I'm currently working on during those 5 minutes or so each day when I'm not online) is trying to figure out how to present this new, not-very-optimistic data to parents in ways that won't be totally overwhelming. (The information in the first edition was disturbing enough to some parents!) So it is a constant tug of war between presenting the information with total honesty and trying to preserve what's left of the sanity of new preemie parents."

Only in VERY recent years, with the advent and utilization of the internet, has this information become more available to parents - such as yourselves.

I learned about the preemie-child internet discussion group from the book BABY ER, which I picked up one day at my local library in the new book section soon after it was published in 2000.

When I found preemie-child, I found a wealth of information that supported and validated what I knew and experienced with my child. I found the path to help when I had been in despair in the dark for so many years. It was like finding a light in a very dark forest.

To me, this information was invaluable and life-saving. To the newer preemie-parents, struggling with the unknown, it is likely overwhelming and occasionally very distressing, perhaps impacting the stress level in the home and the ability of the mother to care for her child without undue anxiety.

I am blessed and cursed in not having had the information available to me when my son was an infant and child due to the fact that I did not have internet access to preemie information until my son was nine years old.

On the negative side, I struggled for years in despair WITHOUT that knowledge.

At the same time, and perhaps on the positive side, I was protected from being inundated and overwhelmed with this information when my child was very young. I was able to be in the present and experience the joy of being a mom and taking care of an infant and child without the awareness of the difficulties that were ahead - or even an understanding of the difficulties that were present!!!

It's a mixed blessing. Knowledge is power and would have enabled me to access help sooner - including early intervention, which I didn't even know about.

Realize that you who are writing on blogs and who are new parents are likely a small percentage of the parents who are out there and you are accessing information that many parents are NOT familiar with.

For mental health and coping, and peace in parenting, sometimes it is wiser to choose to disengage from the information and the facts that are so distressing to read.

But must we shoot the messenger of these facts? A good writer, like Helen, presents information clearly without adding bias colored by emotion or veiled emotion.

I believe that Helen is presenting these facts with a sense of advocacy and certainly works with a sense of compassion. She is aware of the bigger picture and the implications for society at large, the stressors on the systems, educational, medical and legal, that are NOT able to support our children as they grow.

Joan McKenty

Helen Harrison said...

To Claire who said:
"The regrettably abusive Anon from elsewhere was actually asking some good questions about Helen Harrison's equally selective readings of the research. Present statistics with enough (real or imagined) authority, and you can "prove" some fairly dubious claims."

I'd be glad to discuss at length any information I've given, statistical or otherwise, which you find dubious. Would you care to give some specific examples of "dubious claimes"?

Claire said...

As far as I know, I haven't said any of your claims were "dubious". I said that statistics are numbers, which can then be interpreted, well or badly, in words. It is also the case that each statistic represents an actual individual. Let us suppose that 51% of infants born before 29 weeks are disabled, 20% "severely". Then, 49 out of each hundred will not suffer adverse consequences. Does anyone know which 49? Does anyone know which of the 51 in a hundred will lead a relatively fulfilled life, and which will not? Where were the 51% treated? Who by? How long ago? Define "severe". What was the sample size? WHO is interpreting these statistics, and what is their agenda? To be honest, Helen, I greatly dislike being assaulted by your figures, and they tend to go in one ear and out the other. If other people find them helpful, fine. If there were two simultaneous and equally reliable studies (and that is a big if), one that reached pessimistic conclusions and one optimistic, I would like you to give equal attention to both. Good, reliable figures are sorely needed in this area, but the very best are still open to interpretation and misinterpretation. Some time ago, you quoted a study which demonstrated that as mothers, we tend to wear out quicker than average - I think you mentioned a figure of 15 years "older" or some such - yet you still wish to believe that 60 is the new 40. Don't bother to pounce. You have your filing cabinets full of studies - and it will still go in one ear and out the other.

Preemie Mom said...

Terri w/2,
"Preemie Mom - it is interesting that you are addressing the issue of parents of children with cancer in comparison to parents of children who are preterm.

Several years back, a study surfaced about the tremendous affect that cancer treatment had on families - when studied, many parents were found to have post-traumatic stress disorder. Isn't it interesting that our children who spend months in intensive care, who are poked and experimented on and often leave there with on-going significant medical issues. .it appears no one thinks that PTSD might be a *huge* issue for us as well? Anyway, just food for thought. ."

I believe that I suffer from PTSD as well as a few other Moms I know that were in the NICU at the same time. The thought of returning to the hospital for anything gets me crazy. I dread going to the Neonatologist. If DH brings up anything about the birth I get all upset. I have addressed this with a medical professional and am under treatment. It is sort of working but I think as time passes then it will get much better.

Parents and children that deal with peds cancer suffer as well. I know this because I work in that exactly speciality. I am not a doctor, dont claim to be one, but work closely with all the issue that come with the diagnosis. I was always in amazement at how parents handled their child being in the hospital for months or weeks on end. Sometime I judged them because they were very crazy and did strange things, but as I spent months in the NICU I found a new perspective. I think that the parents that I work with are the strongest people in the world. I dont know how they do it with the thought of their child relapsing or even dying. Its very heartbreaking.
The reason why I wrote about kids with cancer is that the kids and families always have the feeling that the bottom could drop out at anytime and news of something bad is right around the corner. I was addressing Helen with this because its nice to be informed but overly informed only makes people more insecure. Also I believe that the NICU experience that she had is much different than the way it is today. There is much more support and the docs and nurses are more proactive in talking to parents about what can happen to a preemie. For instance, the nurses that took care of my baby drilled into me the importance of keeping people at bay during RSV season. So essentially we went on lockdown or house arrest, much to the dismay of my MIL who pretends that everything is fine all the time. LOL Anyway our house arrest is almost over and I am thrilled at the possiblity of getting out of the house more but also scared that my child will catch a terrible cold and end up in the hospital hooked up to a vent again. So I am very realistic when it comes to what can happen to a preemie. I have also been very proactive in having my preemie acessed by any and all theraputic services.
I suppose I should just say as long as my child isnt diagnosed with a terminal disease I think we can handle any kind of delay, disability, or pretty much anything that is thrown our way.

Helen Harrison said...

To Claire who said

"I think you mentioned a figure of 15 years "older" or some such - yet you still wish to believe that 60 is the new 40. Don't bother to pounce. You have your filing cabinets full of studies - and it will still go in one ear and out the other."

Claire...when I said "they say 60 is the new 40, and I hope 'they' are right" I was trying to be humorous in hopes that a light-hearted answer might deflect the troll.

I don't for a minute think I'm as young at 60 as I was at 40. This is simply a silly saying that is currently being bandied about in the media. I was making fun of it and the troll for his/her peculiar obsessions.

It is, as we have to explain to our completely literal mended and humor-impaired son, a "J-O-K-E."

And you're absolutely right: whatever I say goes in one of your ears and out the other, seemingly without impedence. It is amazing to me that you keep coming back to hear more.

Further, if nothing I write is retained in your mind, I think we can reasonably dismiss your "opinions" on all such topics.

Helen Harrison said...

To preemie mom who said "I was addressing Helen with this because its nice to be informed but overly informed only makes people more insecure"

I have no wish to make you feel insecure. But this blog was founded to host a realistic discussion of the longterm outcomes of prematurity. If this discussion is too realistic for you, or if it is making you feel "overly informed," you might want to think about why you keep coming back for more.

Claire said...

Nice line in insult, Helen. Pity you have more trouble taking them than giving them.

I'm sure you would prefer it if only your fans read your comments (and actually, given they are somewhat repetitive, I do tend to skip) but you are not the only person posting here.

Helen Harrison said...

Claire said "but you are not the only person posting here."

Of course I'm not.

But given that I'm not, why do you keep singling me out? Especially since you claim not to read or retain anything I write.

The Preemie Experiment said...

Preemie Mom wrote: "I believe that I suffer from PTSD as well as a few other Moms I know that were in the NICU at the same time."

Looking back now, when Paige first came home I am SURE I suffered from PTSD. I wish I could have admitted it. Paige's OT tried telling me. My doc tried telling me. I even think hubby tried telling me (in his own way as to not get assaulted by his freakishly spastic wife-lol) but I wouldn't admit to it. I think I was afraid that if I admitted it, I would completely fall apart. And, since I was the only one holding it all together (appts, bills, housework, etc), I was afraid that the world would end.

When I finally reached out to other parents on line, I was surprised at how many of them experienced the same exact symptoms of PTSD that I had. Once again, I didn't feel alone.

So, to preemie parent who is reading this and feels they may have PTSD, it's nothing to hide from. Get the help, life will be a little easier.

To Preemie Mom, thanks for speaking about it!

Preemie Mom said...

"I have no wish to make you feel insecure. But this blog was founded to host a realistic discussion of the longterm outcomes of prematurity. If this discussion is too realistic for you, or if it is making you feel "overly informed," you might want to think about why you keep coming back for more."

Thanks for the support Helen. It really shows that you cant possibly support anyone who disagrees with you. I thought this blog was for people to have a realistic discussion. PTSD is VERY realistic and it affects many people who have had preemies. And you of course assumed that you were making me uncomfortable. Please, I am a smart woman that doesnt need you to translate statistics or do my research for me. Please grow up and stop being apart of the "ME" generation. Its not all about you all the time. This is not the Helen Harrison's blog. Last time I checked it was Preemie Experiments blog.
And to be honest maybe this blog is too realistic for you. You cant see past your reality to understand and validate others and their problems.

PE,
Thanks for your kind response to my admission of PTSD. I am doing much better than I was during the summer. Its nothing to be ashamed of and was glad that I finally said something to my doctor. I dont know if I will ever go away. It gets easier with time. I am glad that you recognize the need to support someone when they admit to having a mental disorder and not pouncing.

Helen Harrison said...

To Preemie Mom who said about me:

"It really shows that you cant possibly support anyone who disagrees with you. I thought this blog was for people to have a realistic discussion. PTSD is VERY realistic "


I completely support your having PTSD. It's real and I've been there, in fact I'm *still* there.

As I've described on this blog elsewhere, I still have some of the symptoms of PSTD-- for example, the state of constant "hyper-alertness."

I've personally experienced these feelings in only one other context, and that was after a major earthquake.

It is difficult, after you've been through a major Richter Scale event, and have seen a city in flames.

You keep feeling the ground shifting underneath you, you keep smelling the smoke, you keep waking up suddenly in the middle of the night, ready to bolt to the nearest doorway or outside, if you're lucky.

I've lived with similar feelings regarding my son and his medical problems for over 30 years and it takes its toll.

When you have PSTD, it is good to be among others who have it too and totally understand what you are going through. We are *all* on your side, preemie mom, please keep this in mind. And please remember that staying in touch with other moms who've been through it will help you more than anything else.

We're with you.

Helen Harrison said...

Let me correct my typos above to "PTSD."

Preemie Mom said...

Helen,

Thanks for offering me some honey. Seriously. I mean that.

I cant imagine how you must feel everytime you have to take your son to the doctor or hospital because of a problem. I am sure it must be hard. I cant even imagine how he must feel. What probably seems routine for you would be another person's crisis. In no way is that a put down. It is just the fact of your life and Ed's.

Thanks for being so honest and showing some compassion.

See I can be a nice person..... :)

Claire said...

Why do I single you out Helen? Because I find you abrasive, provocative and incredibly irritating. However, as I think these forums serve a useful purpose, I will try to show some restraint.

Joan McKenty said...

"PROJECTION. Jung thought this process very important. "Projections change the world into the replica of one's own unknown face.'' We blame the other for what we will not recognize in ourselves." from Victor Daniels website in the Psychology Department at Sonoma State University at http://www.sonoma.edu/users/d/daniels/junglect.html

which is referring to the work of Carl Gustav Jung. I saw another quote recently from Jung that went something like: "you can learn the most about yourself from what you find annoying in others."

Rhetorical Question: if it was an esteemed male physician speaking, rather than Helen Harrison, would he/she have generated such personal attack? Would he/she have been pictured or described as old or fat, annoying, insulting or irritating?

Or would any of us moms have had the guts to speak to a physician online in a blog the way we have spoken to Helen? And often in tones of such disrespect?

Can we actually hear what another person is saying or are we all ready to project our own feelings, assumptions and responses before we have even really read and assimilated the words?

Try drawing a picture and writing a description of what you imagine Helen to be based on reading her posts. Where does this image come from? Does it remind you of anybody? Try to distinguish fact from fantasy.

Imagine Helen's words coming out of the mouth of a physician you regard highly. Picture the face of the physician. Imagine the deep voice. Would you automatically give those same words more respect, regard or validity?

Imagine the difference in tone and character you would ascribe to each of these characters - the Helen you have created in your mind versus the esteemed physician. Imagine the different images you would create in your mind of each of these characters. Imagine the personal characteristics you would ascribe to each.

Much of what we read is filtered through our own imagination and laden with projections of our own.

Women dis each other too much. We are all in this together and we are our own worst enemies.

Joan McKenty

terri w/2 said...

To PE - since PTSD seems to be a commonality here perhaps a post on this might be useful in a future blog? Just a thought. . I'm certain I have this as well.

The Preemie Experiment said...

Terri wrote: "To PE - since PTSD seems to be a commonality here perhaps a post on this might be useful in a future blog? Just a thought. . I'm certain I have this as well. "

It will be coming soon! I have so many 1/2 started and saved. I keep revising and adding to them.

So many of us can relate to PTSD!!

Anonymous said...

PE,
Ditto on the PTSD blog. I was diagnosed after I lost my first child, 23 week preemie. I had severe issues with my PTSD during my 2nd pregnancy. And I know I still show signs now with my 24 weeker home.
Would love to hear how others cope as sometimes I do and honestly sometimes I dont (then I just medicate.)

Joan McKenty said...

Peter Levine has done some fascinating work on PTSD. I recently listened to some of his cassettes on "Trauma and Healing" published by Sounds True (www.soundstrue.com) and would recommend that anyone suffering from symptoms of PTSD give it a listen.

He was into wildlife biology before psychiatry so he comes from a perspective that is different than the traditional psychiatric interpretation and treatment of PTSD. His work also derives from theory based on observation of the experience and response to trauma of animals in a natural habitat.

Some of his books, which I have not read but would like to based on what I heard on the cassettes are "Waking the Tiger: Healing Trauma: The Innate Capacity to Transform Overwhelming Experiences" and "Trauma Through A Child's Eyes: Awakening the Ordinary Miracle of Healing". I believe I read in a review of the latter that he includes perinatal trauma in the book.

You can learn more about him at
http://www.traumahealing.com/ which also includes information about an upcoming conference in Berkeley, California which is, I believe, where he works.

Joan McKenty

Preemie Mom said...

Joan said
"Imagine Helen's words coming out of the mouth of a physician you regard highly. Picture the face of the physician. Imagine the deep voice. Would you automatically give those same words more respect, regard or validity?"

Joan are you trying to stir the pot?

Anonymous said...

Gender does not play a role for me in deciding how much credence to give to somebody's words. Educational background, current knowledge of the subject, the quality of the research they are quoting (how the studies are powered, n's, etc), their probable personal biases, etc. are the main criteria I use to judge how much validity to give to what somebody is saying on a medical topic.

Much of what Helen quotes are good studies. Some are average at best with small n's and not very recent. I think a lot of what Helen quotes is very valid. But I think some of it is research I don't pay as much attention to for the reasons noted above.

I think one of the big things that colors my opinion whether it is something coming from a doctor or Helen is their viewpoint. I tend to view research thrown at me from neos as more likely to be overly optimistic. But I also view research quoted by Helen to be likely to be overly pessimistic. Given that knowledge, I read it all with my own critical eye and realize the truth lies somewhere in between.

Helen Harrison said...

Re PTSD:

There are some strategies that have really helped me over the years, plus a new approach that I'd like to mention.

First of all, exercise really helps!

I know exercise is the last thing anyone wants to do in the numb, paralyzed, yet paradoxically hyperalert state, that PTSD puts people in, but it helps clear away the bad chemistry and bring in the endorphins.

When trying to cope with Ed's medical issues or when trying to keep from answering in kind (or at all) to trolls, I have found a Concept 2 rowing machine to be particularly effective. Long walks, when I'm able to get out, help a lot too.

The important thing is to break the chain of bad chemistry which can intensify if left unchecked.

Music is another great mood enhancer -- I often play New Agy sound tracks that are supposed to generate Theta or Alpha brain waves. I have no way of validating such claims, but I do find it soothing.

Wine with dinner is another help -- but I try to save that for special occasions -- like our 37th wedding anniversary coming up this week.

Another very interesting new technique is the use of beta blockers. These are drugs that modulate or suppress physical reactions to the fight-or-flight syndrome, the heart rate rise and other physical symptoms of stress.

When these drugs are given to, say, soldiers in Iraq immediately after a truamatic experience, it blunts the chain of physical events that imprints a particular horror on their brains, leading to PTSD.

These drugs also work *after the fact* and can help break the chain of PTSD reactions even when they've been long entrenched, according to a report recently aired on 60 Minutes.

Beta blockers are also used by students to suppress their nervousness during exams and by musicians, actors, speakers before public appearances. They do tend to cause weight gain and can raise blood sugar levels, so proceed with caution.

SSRIs such as paxil or prozac are extremely helpful to many people as well.

Anonymous said...

I find klonopin to be very effective. You can take it at the onset of an 'episode' and it kicks in in about 15 minutes. I believe it a class 4 drug that can be used, under medical supervision, during pregnancy. While I was in the hospital and under lots of stress due to PTSD we would see a decline in my contracts when I would take the klonopin. I'm not a big fan of medications but sometimes they are necessary. I agree with Helen that exercise is the best medicine but it can be difficult when you are home alone with a micropreemie that can't yet go in public or be left with someone b/c of immune deficieny and chronic lung disease. Thank goodness Spring is almost here in New England so we can finally go for walks!

Lori said...

Helen,

The study reported on 60 minutes used the common beta blocker inderal (propranolol). In order to be effective in *preventing* PTSD, inderal has to be administered almost immediately following the traumatic event. If given at any point afterwards, the inderal is being used to treat the PTSD, not prevent it.

When a person is exposed to a highly traumatic event, it appears the body's physiological response plays a part in how the traumatic event is processed and stored in the mind...and how it is recalled. Thus, the theory is if you suppress the physiological response, the memories should be processed and stored in a way that is not as prone to result in PTSD symptoms.

As for side effects, the dose of inderal needed to treat physiological symptoms of stress is considerably lower than those needed to treat blood pressure, essential tremor, etc. Thus, side effects should be mild to non existent for most people.

Klonopin (clonazepam) is also a good choice, as it is the least addictive of the benzos. Even though klonopin is usually given sub lingual, onset of action is still around 10 minutes...considerably longer than say, ativan or xanax. The half life of klonopin is also longer. Taken together, these properties give klonopin a more favorable profile for longer term use.

Lori
(psychiatrist - bet you never would've guessed, huh?) (:

Helen Harrison said...

To Anonymous who wrote concerning "Educational background, current knowledge of the subject, the quality of the research they are quoting (how the studies are powered, n's, etc), their probable personal biases, etc"

I remain willing to discuss any of the studies I have quoted: the "n's," and -- when it is relevant -- the odds ratios, the relative risks, the confidence intervals, etc., and anything else you'd care to discuss, for example, why infant follow-up research begun in the 1980s still matters to us today, and may even underestimate the scope of current problems.

If I don't know something, I will say so, and I hope there are enough docs out there reading this blog to help fill in any blanks or correct any mistakes.

Helen Harrison said...

To Lori who said "The study reported on 60 minutes used the common beta blocker inderal (propranolol). In order to be effective in *preventing* PTSD, inderal has to be administered almost immediately following the traumatic event. If given at any point afterwards, the inderal is being used to treat the PTSD, not prevent it."

The study referred to on 60 Minutes was only about nipping PTSD in the bud, however, a woman was interviewed on the same program who had long-standing PTSD and propranolol helped her get it under control. The strong implication was that it is being used by some physicians in longstanding cases as well, though I am not aware of any studies on it.

Lori said...

Helen,

That's exactly what I said...paraphrased (:

Lurking while I'm eating lunch...

Lori

Long Term Listener said...

I am a long term user of propanolol..it kind of lets you run in 3rd gear as opposed to 5th.
Lowers my BP.
I actually use it primarily as a preventative for my migraines and it works on that basis. It has transformed my life beyond all recognition.

Helen Harrison said...

Also to Lori who said "Thus, side effects should be mild to non existent for most people.

Can you tell us what dosages of propranolol would be effective in PTSD but not cause the other side effects?

Also: Would taking such a dose of propranolol in any way inhibit heart rate response to aerobic exercise? In other words, can someone taking a therapeutic dose for PTSD still get an effective aerobic workout?

Thanks for your info!

Helen Harrison said...

To long time listerner who said about propranolol: "It has transformed my life beyond all recognition."

Wow!

To Preemie Experiment and Lori:

I would love to have a group of physicians,of different specialties, who could come on to this blog and help address the issues we are seeing in our preemies and ourselves.

We could also bring up studies to them for comment and discussion.

Anonymous said...

Quick question for Helen.

Why don't you have your own blog? You are a prolific commenter on so many blogs. You obviously have a lot to say and a story behind it (regarding life with your son). Just wondering why not? And don't say because you have NAROF because that is not a Helen Harrison blog alone.

Lori said...

Helen,

A "normal" dosage of inderal for say, hypertension, is going to be around 200-300 mg (can be as high as 700 mg). For anxiety, I would prescribe no more than 80 mg, normally.

As for aerobic exercise, inderal is going to have a marked effect. When taking inderal, your heart isn't going to be able to pump as quickly, which has two implications. One, because your heart is not working as hard, your heart is not getting the full benefit of your workout. The second, bigger implication is that because the heart is pumping slower than normal, less oxygen is being sent throughout your body...which is going to make you have what I very scientifically call "lead legs." Basically, it's just going to make you very sluggish.

The half life of inderal is 6 hrs, if memory serves me correctly (might be an hour or two more, but don't have time to look it up right now). I advise patients to avoid exercise for 8-10 hours after taking inderal.

As for being part of a group of physicians who can comment constructively here, I am not sure I can be of much help...unless we are talking about mental health. I am so specialized that my knowledge of neontalogy is less than that of many of you here....which is why I've been lurking.

By the way, I'm mom to a 27 weeker, Kate...now a sweet, beautiful 9 year old.

terri w/2 said...

My best friend was *just* put on Atenolol - she's been dealing with PTSD and anxiety and panic attacks for a few years now. She too had a preemie.

Anonymous said...

I have been on inderal for years before and after our preemie experience, for medical reasons.

It did not treat nor prevent PTSD for me AT ALL. The only thing that worked was months of expensive psychotherapy, and even that was not 100% effective. Maybe it would have helped in larger doses, I don't know. I know its anecdotal to even mention it.

Joan McKenty said...

Preemie mom asked: Joan are you trying to stir the pot?

Well, no, just trying to offer perspective, a different way of looking at things. Perspective is everything and there are a million of 'em.

For example, imagine your mother-in-law...stating with authority the results of research on prematurely born children...

:- )

OK, well, maybe NOW I'm stirring the pot!!! But don't take the bait! Don't take it!!!

Hopefully, you will laugh instead. It's the best medicine.

Joan

Preemie Mom said...

Joan you did make me laugh!

Thanks I need a good laugh several times a day to keep my sanity.

:)

Helen Harrison said...

To Lori who said:" unless we are talking about mental health. I am so specialized that my knowledge of neontalogy is less than that of many of you here....which is why I've been lurking.

By the way, I'm mom to a 27 weeker, Kate...now a sweet, beautiful 9 year old."

You have a lot to offer here both as a mental health professional and a preemie mom. congratulations on your daughter!

The Preemie Experiment said...

Thanks for everyone's comments on PTSD. I had started a post on the subject a while back but it got put on the back burner. I just finished it and it's up now.

If I am not around for a few days, please know that I am reading all of the comments. Life took a turn in our house last night and the trauma carried through to tonight. Paige goes through periods of major meltdowns. It started last night with me asking her to go back into the shower and rinse her hair better and it got completely out of control tonight when she hurt her brother because her "thoughts told her to." This is not the first time it has happened but we thought she had a better handle on her OCD thoughts lately.

I am just devastated right now and feeling quite shaken up.

Hugs to all.

The Preemie Experiment said...

Lori,

Paige's psychologist had told me (a few weeks ago) that she heard of an anxiety med that just got approved for pediatric use. She couldn't remember the name of it though. We were supposed to go back to Paige's psychiatrist today but all hell broke loose in our house.

Do you know the name of it??

Paige doesn't do well on SSRI's because it makes her bipolar worse. (she was put on Zoloft when she was 4 and tried to pull out her eye ball. Literally.)
But, her anxiety disorder is worse than her bipolar. I'd like to go back to treating her anxiety.