Sunday, January 21, 2007

How is she doing?

Over the past 8 years I have been asked that question a countless number of times.

In the beginning my answer depended on who asked...

To the store clerk I would say.... "Oh she is doing great. A true miracle!"

To the relative I would say... "She is such a fighter. A true miracle."

To my friend, who has full term children... "She is so strong. She's going to be just fine."

To my husband, when he would call during the day... "She's just laying on the floor screaming. When I try to hug her she scratches her face. I'm exhausted."

It didn't take long for me to realize that she was not one of the "miracles" on television and I became sad. Why did I have a preemie who was not fine? What did I do (or not do) during her early years? Why are all of the other micropreemies OK, and mine is not? I was told that I was having trouble adjusting and my stress was affecting my daughter.

I thought I was alone. Then I found a very small group of other parents who did not have a miracle either. You mean... I am not alone? Your child cried all of the time too? Your child did not talk on time? Your child has severe constipation? Your child has severe sensory issues too? Your child has epilepsy? Reflux too? Sensory integrations dysfunction... that's what it's called?

As I woke up, I became angry. I was angry because I was forced to believe that all preemies are miracles and they turn out fine. After all, they do catch up by age 2, right? Ha!

I began to tell everyone the truth about our life. "How is she doing?" turned into an opportunity to educate the public about the effects of prematurity. I told the store clerk, relatives, friends, other parents in waiting rooms, nurses, doctors, specialists, receptionists in specialists office, parents at the preschool my daughter attended, teachers, neighbors. I was awake and shouting.

Do you want to know what happened? (those of you who are preemie parents may already know)

I was labeled. I became one of the following...

  • the parent who wanted the attention because she had a micropreemie
  • the parent who could not get over her daughters early birth
  • the parent who couldn't accept that their child was fine, despite being a preemie (our daughter really "looks" fine on the outside)

The best one yet....

  • the parent who has Munchhausen's (oh yes, it really happened!)

Some of those labels were given to me by preemie parents themselves! Those who were at the beginning of their journey were the hardest on me. I was trying to make it better for *them* (and all who would come after them) by educating everyone. (**let me stop here and say that I am NOT upset with the new preemie parents-I was one of them and treated others the same way)

OK, let me catch my breath.

I went back into hiding and into a deep sleep again.

A few years passed and I was contacted by a large organization who now raises awareness about prematurity. They wanted our daughter to be an ambassador (of our county). Ah ha! My outlet had arrived. Now, when people ask me 'how she is doing', I can tell our story. The whole truth, and people HAD to listen. I started doing interviews for newspapers. The paper would arrive and 1/2 my story was cut. The television interviews... mine never aired. The speeches.... after the first honest one, I was given a fraction of the time to speak. The ambassador that was chosen the following year was only 1 year old. Cute as a button and her parents told of their miracle. I am no longer involved with that organization.

I refuse to go back into hiding again. No more deep sleeping for me.

Yes, my daughter looks "fine" but she is not. Those of you who know her may still label me. I don't care anymore. I dare you to live in her body and mind for a week. You'd come out screaming too!

*I* owe it to the future preemies, and their parents, to be honest.

To the media... are you brave enough to report the truth?

(by the way... you know that small group of parents that I found who validated my experience... it's not so small anymore. And, there are hundreds of other groups where parents are expressing concern about their "miracles")

34 comments:

terri w/2 said...

Great post. As long as there is profit to be made from preemie survivor stories, I'm afraid the truth will never really be told. Miracle baby or feel good stories abound on the internet and are very much profit-oriented - whether it be from the well-known organization that claims to want to reduce prematurity, or from NICU's themselves.

About 15 years ago, I ran into a mom who had 2 survivors of a triplet pregnancy - both had cerebral palsy and other issues. She said that when her kids were young, she was asked on a telethon to promote fundraising for the hospital..however, when her babes needed thick glasses, braces and one a walker - the hospital no longer wanted them on their telethon.. .it's kind of a kitten to cat syndrome, only involving our preemies. It's great to see and talk about the miracles, but don't annoy me with the truth about the long-term disabilities of the many other survivors.

The truth is, is that prematurity is now the number one cause of mental retardation and cerebral palsy according to the CDC.

The truth is, our kids do NOT grow out of their issues by age 2. Several recent studies are showing the longer a preemie is followed into childhood, the more disabled they become.

The truth is, support for families with impaired survivors is negligible.

The truth is, young parents who come to hospitals with impending early deliveries believe that their child WILL be the miracle too. And maybe they will, but statistically, they probably won't. It's difficult for NICU professionals to reverse this way of thinking, I'm sure, but then again, hasn't it been these very NICU's that have promoted the "miracle baby" mentality?

I remember when the McCaughey babies were born and the media coverage of these kids - how many of these same kids are now disabled - 3 or 4? Where are the NICU professionals that were gloating on TV way back in '97?

The Michigan sextuplets born several years ago - the NICU posted a website to go to for baby updates - 3 years later, several are severely disabled. Is the NICU website still posting updates? Bet not.

The baby born in Chicago 2 or more years back, one of twins who weighed 9 ounces at birth. Her parents and physicians were on TV telling the world she would most likely be normal - huh? Really?

And on and on and on. Our children and families dealing with long term issues will never receive the assistance or even understanding due us/them when all that seems to hit the media are the wonderful miracle baby stories. It's time that the truth be told.

Thank you for creating a blog that allows that discussion!

Lori said...

Very interesting post. I truly am sorry there is so little support for those preemies who don't fit the mold of the "miracle story" that the media and public are so fond of.

What confuses me is why the "well-known organization" (is there a reason we are giving them anonymity?) doesn't want the full range of "preemie stories" out there? I mean, it seems like Fundraising 101 that if you want people to contribute to your cause you need to demonstrate to them that there is a need and a problem. When I speak to people casually about the issues of prematurity, the biggest misconception I run into is that preemies are just born small, spend some time in the NICU, and then go home and eventually catch up to their peers. For some people, that doesn't seem like that big of a problem (I realize that even that is naive). It seems like to me that far more attention, interest and ultimately money would be raised by showing people the potential long term effects of prematurity. It is my belief that the "cause" of prematurity could only be helped by showing the lifelong implications of premature birth that do exist, and not only exist, but exist in large numbers.

So many people are only interested in causes that are "life or death", well.... prematurity IS about life or death. And it is certainly about a large number of children who were denied the possibility to have a full, healthy life because of their premature birth. People need to realize that the vast majority of these children were not destined to be disabled. By that I mean that there is nothing in their genetic makeup that determined they would go through life disabled. These children were otherwise healthy and strong for their gestational age and had they been born at or near full term, they would have been as "normal" as any other kid.

The media shows kids with cancer, diabetes, MS, autism etc... why are they afraid to show a child with multiple disabilities and say outright, "this child suffers from this and this and this... and it is a direct result of her being born premature." Honestly, I think that is exactly what would make people sit up and take notice!

terri w/2 said...

Lori;

You are absolutely correct - the March of Dimes sits squarely on both sides of the fence in regard to their message to the public. On one hand - they discuss prematurity as awful, something to be avoided due to long term problems, THEN, they turn around and have poster children (now called ambassadors) who are normal or near-normal, but always cuddly cute survivors, and almost always called "miracles" usually of extreme prematurity.

I have to say though, that at one time, their approach to prematurity was much worse. .in the early 1990's, they had a footprint ad that appreared in many women's magazines - there was a footprint of a full term infant with a very preterm infant footprint beside it - the simple, full page ad said only "guess which mother drank while she was pregnant" . . some said "guess which mother took drugs while she was pregnant". .yikes. So in some respects they have improved, but the quality of their message and the truthfulness of it still leaves MUCH to be desired. They still lead people to believe that prematurity happens to other people - people who are drug abusers, heavy smokers, etc. - rarely do they say that prematurity can happen to anyone, although it is beginning to shift slightly.

Helen Harrison said...

The Well Known Organization -- I'll call it the WKO -- actually tells it like is (but only off camera.)

Speakers from WKO at such venues as National Perinatal Association meetings, pull no punches when they talk about prematurity and other disabling conditions.

But they seem to be running scared of the right-wing fundies who oppose, among other things, pre-natal testing or anything that might lead to "you-know-what."
And they don't want to upset new preemie parents or providers/recipients of enhanced reproductive techniques.

Does that mean we should go easy on WKO? No! We need to help stiffen their spines.

I'll believe WKO is serious about combatting "birth defects" when I see public service ads warning against irresponsible fertiliy clinics and docs (such as the guy who used to advertise his amazing ability to give families twins!)

This is what is really fueling the rise in prematurity rates, but I doubt we'll ever have Pergonal or Clomid abuse featured in a WKO poster.

Lori said...

Helen,

I thought I had read that the increase in multiple pregnancies/births only accounted for a small percentage of the increase in premature births?

I should acknowledge that all four of my pregnancies were conceived with the use of fertility drugs (3- Pergonal, 1- Clomid). However, I consider my doctor of the highest ethical standard and we were always prepared not to proceed with any cycle that yielded more than two viable follicles. We hit "singles" three of the four times, but as you know conceiving our twins did end in tragedy.

Helen Harrison said...

Lori,

The latest info I have is from 2004. Twins births rose 1% over 2003. In all, twin births have risen 87% since 1980. Higher order multiples have quadrupled since 1980. Multiples account 3.3% of all live births now. Half of twins are born prematurely. 2/3 of triplets, and so on.

These trends are due to women waiting until later in life to have babies (even without fertility treatments older moms are more likely to conceive multiples)
and, of course, fertility treatments.

Helen Harrison said...

Another thought on the fertility issue -- many high-risk parents are terrified to try again after they have had a baby go through the NICU.

I know I was! My first pregnancy ended with the premature birth of our son Edward.

I knew that Edward was born early because I had contracted food poisoning from "listeria," but I wondered if I was somehow a carrier of this organism. Or if I had some sort of immune defect that had made me unusually vulnerable. I spent years researching the issue.

[BTW, anyone who wants to see this vicious intracellular organism in action can go to the UC Berkeley webcast of the Spring Semester of Biology 1A. Go to the end of the January 17th lecture, and you will see a film clip on listeria entitled "I Hope This Never Happens to Your Cells."]

It took five years of researching the perils of my particular type of high risk pregnancy to get my nerve up to try again -- luckily this baby made it to term.

Fear of losing control of their baby and their lives to the NICU has driven a number of my friends to forgo chancing a high-risk pregnancy. Others leave the country to give birth, or have had late term abortions once preterm labor started, or have planned to give birth in the woods -- literally.

One woman I know, who does premature infant follow-up, actually spent the critical period of her pregnancy in a cabin in the Smoky Mtns. to avoid the NICU.

When speaking with neonatal staff, I am often told that "the woods" would be their option, too.

A group of female neonatologists from Europe once told me they would head for the Alps in the event of a threatened birth below 26 weeks.

I've been at neonatal conferences in which the physican audience is presented with a typically complex micropreemie case history and asked, "How many of you would force treatment on this infant over the parents' wishes?" Nearly every hand goes up.

Then the audience is asked, "How many of you would want treatment if this was your child?" Nearly every hand stays down.

If palliative care for extremely preterm babies was more of an option, I can't help feeling that more high-risk families would gather the courage to try again.

Long Time Listener said...

A tale from the UK here. When the Chancellor of the Exchequer and his wife had a prem baby,I spoke to a National Paper about the flip side of the "miracle baby" stories. The sub editor is a life long friend and went into battle about my potential piece. The higher it rose - the more it got blocked. They only want to hear the Good News stories. The media have a heck of alot to be held accountable for. They perpetuate these irresponsible stories and mislead people.
As I keep saying, pregnancy is 40 weeks -give or take- for a bloody good reason. It seems beyond my comprehension that anyone can believe that a baby born at these early gestations can be untouched by such early arrivals. Part of the reason for their beliefs are the media. If the media would like to sit with us all for a while, sit by us as we push NG tubes down, as we hang g- tube bags, as we deal with our children's needle phobias, as we check to see there is enough oxygen left for our baby while we pop and grab a shower, as we take them back into Clinic for whatever it may be. This list is endless.
I have said it before - there are neos out there that are sterling - and I know them. I have trusted them with my child's life and they have looked after him as they would their own- of that I do not doubt. They were confident in sharing their fears. They are not afraid to say they don't know and for that I thank them.
And for those parents who are tired and worn out-all of us wish you well, and we wish we could help.

terri w/2 said...

Long Time Listener said "And for those parents who are tired and worn out-all of us wish you well, and we wish we could help."

Thank you - I'm one of them. We're now in-hospital, day 7 of a radical surgery for one of my 21 year old twins.

Your post brought tears to my eyes.

Lori said...

First, let me say to terri w/2- I am so, so sorry for all you are coping with right now, and all you and your daughters have gone through in the past 21 years. What a long, long road... My heart is with you and any parent anywhere having to watch their child struggle and/or suffer from whatever the cause.

But secondly, I still have to say I really don't get it!! I am back to the question as to why the WKO wouldn't want to put the most realistic face on the problem of prematurity as possible? It keeps going round and round in my head. I mean, when Jerry Lewis did his Muscular Dystrophy telethons did he trot out some asymptomatic child who looked like he could run out and play Little League. Heck no! He would surround himself with precious children in wheelchairs and walkers. When St. Jude's does their tv campaigns, do they only show kids who are now cancer free and look as though they don't have a care in the world? No! They show some of the most gut wrenching footage imaginable of bald babies and children going through terrible procedures, and they are not afraid to tell the stories that don't have happy endings. They know that the best way to get people to open up their pocket books is to scare the bejeesus out of them by convincing them that "this could be YOUR child."

The way the numbers are going, it is not becoming far fetched to say to people that it is almost a guarantee that someone in their life will be touched by prematurity. Why not tell the whole truth- the good and the bad, the triumphs and the traumas?? I don't get it...

I say all of this because I can look at myself and know how naive the general public is to the problem of prematurity. Even after having lost twins at 23 weeks, I realize now how naive I have continued to be. I would read survival statistics and mourn the thought that our babies could be with us today. But the quick mentions of percentages of babies with "mild-moderate" disabilities didn't really resonate with me in a realistic way. It never even occurred to me that you could have a daughter 21 years down the road still needing to go through painful procedures and surgeries as the result of her extreme prematurity. I have often thought to myself, "oh, if only they could have made it one more week, or two more weeks..." as though everything would have then been a bed of roses.

I will never stop missing my lost little ones. I will never stop wishing everything could have turned out much differently. Our family is happy, and life is full, but there will always be an empty place. But I will also be very careful about allowing myself to hold naive thoughts about "what might have been."

terri w/2 said...

Lori - this must be so difficult for you to come here and be with us, missing your twins. .but you are so needed in this discussion! Don't ever feel that your opinion and experiences are not welcomed.

Thanks for all the kind words over the past few days - it means a lot. My daughter was discharged today, but is still in tough shape - still has a foley cath due to inability to urinate. What a road is right. The surgery was for severe scoliosis, secondary to severe cerebral palsy, secondary to brain damage, secondary to IVH, secondary to extreme prematurity. Like medical dominos (from hell).

What you have written is so true - people don't know and why not? It's a mystery - perhaps Helen or others have some insight that I don't on this one. Maybe it's because preemies are genetically normal, and the assumption is that they will simply stay that way, and neonatology is working very hard to make it seem as though they are not responsible for the neuro damage that occurs - be it severe or subtle.

In my nursing class, I have 45 fellow students. In this group, there is me with 25 weeker disabled premature twins, another student who has a neice and nephew who were 28 weeker premature twins, both disabled, and another gal whose best friend had 23 weeker twins last year - one is such a complete mess - within 6 months of birth was already diagnosed with severe CP, mental retardation, blind, and now being treated for cranial deformities as a result of severe brain damage - (craniocynostosis) he's what they call a "frequent flyer" in the peds unit. The other baby is delayed, but no diagnosis yet, but most likely coming. So yes, there are 3 sets of disabled twins among family and friends of my small group of nursing students. Amazing. And yet, people don't get it. .they think if a baby has problems, they were born WITH something. They do not understand that neonatal, while saving their lives, damaged them permanently and sometimes very severely.

For this reason, like Helen said, I never went on to have more children, as twins run heavily in my family, and I could not risk going through the NICU ever again. Even discussing the NICU in nursing school sends my blood pressure up about 50 points!

Lori said...

terri w/2-

Honestly, I'm not sure why I am so drawn to this discussion other than stories like the one shared on this blog, yours, and so many others have opened my eyes to something that now I can't seem to ignore.

I was first drawn into the "preemie discussions" out of shock and dismay, as I discovered that perhaps we had more "choices" for our twins than we had thought at the time. I think it was all part of a continuing effort on my part to try and understand and make sense out of what had happened to me, and to my babies. It was in essence a feeling of, "What? You mean we had *choices*? You mean they could still be with us?" And then as I read more of the various neonatal blogs, and their unrelenting defense of resuscitating all extreme preemies I started to feel horrible regret and guilt. In reading the back and forth of all the "ethical" discussions, I felt myself questioning, "You mean we not only made the "wrong choice" but we made an immoral, unethical and potentially *criminal* choice?!?" And then voices like yours started to speak up, and through your stories I started to see that the neodocs perspectives I was reading were only one side of the story. Your stories helped me to remember that I have *my* side to this issue too, and I shouldn't allow it to be diminished or clouded with lofty discussions of "ethics." But even at that I felt a new defensiveness rise up in me. I heard my heart cry out, "You mean I am supposed to be GLAD my babies died?!?" But that too has faded as I have come to realize that people like yourself are not asking me to be *grateful* that my babies died quickly and peacefully, but to acknowledge that there are other kinds of losses, and other roads that carry their own weight and struggle.

You have my heartfelt support and my utmost respect. Not because you are superhuman, or perfect, but because you get up everyday and keep putting one foot in front of another. I do pray that you smile and laugh whenever the opportunity presents itself. I know now that it is trite and even silly for me to say something like, "I don't know how you do it..." or "I never could..." because I have had so many people say similar things to me about losing two infant children. I know you just DO... you take what life hands you, mourn what needs to be mourned, celebrate that which is worthy of celebration... and you keep going.

Helen Harrison said...

To Lori,

I am so glad you have found some degree of peace here. If any other parents you know out there need the consolation of our experiences, please, direct them to us.

It is too late for many of us, but we want to help others find comfort in decisions they may have made that really are *legal* (more about that later) and humane.

I know there are many more parents like yourself out there, who have been through hell and back and need this kind of support.

And there are many other doctors like your OB who need to be told that they behaved admirably in a difficult situation. They need to know we support them.

We all need to speak up and speak out.

Thank you for coming here and being part of this discussion.

As you traverse the Internet and find other families wondering "what if?" please send them here.

Gratefully,

Helen

Lori said...

Helen,

I appreciate very much your support and the spirit of your comment. My only caveat is that I would never want anyone writing or visiting this blog to think that I am using your stories and experiences for my own consolation. They have been enlightening and eye opening, but I feel nothing but heartache for every child who has to pass through this life with any amount of physical or mental suffering. And I have nothing but the deepest compassion for every parent who has to stand by and watch.

As you are perusing the internet I would like to draw your attention to a beautiful site and a wonderful organization. Go to www.soulumination.org Lynette Johnson is a well known photographer in my neck of the woods (she photographed Bill Gates's wedding) and several years ago she started offering her photographic talents to families of critically ill babies and children completely free of charge. She has photographed children in a very wide range of situations, and she always manages to capture the beauty rather than the illness. What might interest you about her work is that one of her motivations for this work is the life and death of her best friend's firstborn son who was born at 24 weeks over 20 years ago. He lived for 3 months in the NICU and underwent the kind of suffering you all know so well, only to die in the end. She never got to meet this special little fellow (her friend was in a different state at the time), but she continues to dedicate this work to him. Lynette has become a dear friend to me and while she did not photograph our sweet twins, she did help us to restore and preserve the few photos we did have taken. Her work is not necessarily relevent to the discussions at hand, but it is beautiful and inspiring and worth a look.

Anonymous said...

Its funny, but I have found the worst offenders for those who don't want to hear the down side of prematurity and disability are some of the other prem parents. Some of the parents who have children who were extreemly prem or are disabled as a result seem to play a game of "but my baby was more prem than yours, my child has more severe disablilites than yours". It seems to be a competition - go figure. I left a prem support group becuase of this attitude. If you didn't have the smallest or sickest child you were told that you had no right to be upset or find any situation difficult. In the end it is all hard. It doesn't matter what gestation or how impaired your child is it is still so very difficult to watch your own baby
suffer. The mothers that you think would understand are sometimes the first to chastise you because you may take some of the sympathy away from them. All I wanted sometimes was a bit of emapthy (especially around the time of CP diagnoses). Someone to say, "yep, I know its rough". Not to turn around and tell me that I was lucky becuse she didn't have something else that their child had as well. Sorry for the rant.

terri w/2 said...

Anonymous;

You are absolutely correct. No matter what gestational age, no matter if it's one diagnosis or many, or severe or less, you do grieve! In fact, I think the grief is more profound when there is hope for a normal outcome and a diagnosis of CP rears it's ugly head. I know of several parents whose children were over 30 weeks whose kids have CP and other issues. The grieving over this certainly isn't limited to those on the limits of viability. I hope that my posts haven't dismissed that reality for you as this wasn't my intent.

Helen Harrison said...

To Lori:

Perhaps "consolation" is not the right word, but, instead, a broader understanding of the consequences of the difficult choices you have had to make.

Lori said...

Yes, Helen you are right... I certainly have been gaining a MUCH broader understanding of my own experience and the experiences of others! I appreciate so much all those who are willing to share so honestly and yet graciously at the same time.

The Preemie Experiment said...

March of Dimes...

I should have elaborated more in my post (and perhaps I will devote a post to this soon)...

The reason why I stopped being involved with the March of Dimes was not solely because of the organization itself. I think they have brought the discussion of prematurity to a whole new level. For that, I am thankful.

What I wished I would have seen was more control, on their part, of what their ambassadors (mostly the local ones)were saying. I think by allowing parents of infants or very young preemies to say "See my child is fine" is detrimental to the cause.

If the general public sees these kids and hears their parents stating that their children (at age 2 or 3) are completely fine, thanks to surfactant (MOD's claim to fame), it does nothing to change the public view of prematurity, which is crucial in my opinion.

And, when my interviews were not published or aired, it was not MOD to blame. The media was at fault.

MOD is raising a lot of money and have socked a lot of it towards research. But, research itself will not educate a potential parent on the outcomes if their child is born early.

The Preemie Experiment said...

Anonymous said, "Some of the parents who have children who were extreemly prem or are disabled as a result seem to play a game of "but my baby was more prem than yours, my child has more severe disablilites than yours". It seems to be a competition - go figure."

Dear Anonymous,

I completely agree with you!!!! It's sickening in my opinion! I too have left other preemie groups because of this very mentality. My daughter was born at 25.5 weeks. One day I posted to a group about her fine motor delay, secondary to mild CP. I was looking for support on how to get the school to adapt to her needs. I got a private email from a member saying something like, "well, my preemie was a 24 weeker and at least your daughter can write!" Geesh.. thanks for the support. I could have "trumped" her back with all of my daughter's medical issues but I just swallowed my anger and took comfort in the fact that karma will bite her in the butt one day.

I'm sorry you didn't find support when you first received the CP diagnosis. All of the little letters our children receive (CP, ROP, SID, OCD, etc) are a blow to us parents, no matter how informed we are.

How are you doing now? Please know that you can always come here.

Anonymous said...

terri w/2,

in no way have I ever felt your post have ever been dissmisive(sp) of any other family and what their own realities are. I personally have much respect for the knowledge and wisdom you have. I greatful that you share what you have learnt in such a respectful way.

My sistuation that I wrote about in my post was a prem palygroup I used to go to. I didn't have internet acess at the time and I was at a point where I was desperate for info and understanding.

the preemie experiment,

thank you for your understanding reply. My daughter is six now (ex 28 weeker)Her CP diagnoses was at the age of two. I had my strong inclings though from when she was about 8 months. Just convincing the medical profession though was another thing. That in itself nearly did my head in. In someways diagnoses was a relief. Sounds stupid, I know. It seemed to me that some of the Drs were scared they would upset us if they agreed with our concerns. "Just wait and see" we were told repeatedly. The ifs and maybes were harder than knowing the truth.

At the moment I am at realtive peace with what life is for us all. Still very much the one step forward, two steps back at times. The backwards steps are not always easy. We are negotiating the school system at the moment (I have a lot to learn). She is also starting to realise that she is different, so there is the challenge also of dealing with her fears and losses that she is now becoming aware of. Thank you for your kindness.

If nothing else I hope I have learnt to be more understanding of others' journerys. None of them will ever be the same.

delightful-d said...

I've read over your blog. Every single post and comment. I am in tears! I am the Minnesota Mom who had the premature baby boy 8 years ago. I never wrote or told very many people of my story mainly because, well, my son has a diagnosis of Aspergers/Autism and I am dealing with all of that. I've said all along "I want to do a study on premature babies and Autism". Currently 9 out of every 10 parents we meet (in the Autism Support Group) state their child was born prematurely. Is this something more to be looked into? I'd say yes! I'd be more than happy to share more of my story with you. I "tamed" my story down (see my blog) when I posted on Suburbanturmoil. What about magnesium sulfate or as I say the "evil drug"? I want to hear more from people who have had that drug. I link a lot of problems to that drug. Many argue that it is a drug to save your child's life. Yes, I agree, it did what it was supposed to do but.. BUT... what about the side effects? I'd love to be a part of your study and share more. Please feel free to contact me. Sincerely,
Minnesota Mom

munkeesmama said...

"Yes, my daughter looks "fine" but she is not. Those of you who know her may still label me. I don't care anymore. I dare you to live in her body and mind for a week. You'd come out screaming too!"

As a fellow micro preemie mama I know this all too well. Most days my daughter LOOKS great, but she has severe reflux, is on continuous feeds via a feeding pump for 20 hours a day, has stiff muscles and most likely cerebral palsy. I don't know why it stings so bad to hear "She's doing great now!" or "It's so glad to hear she's doing better". They see she has gained weight and deem her all better, whre in reality another issues has replaced the one before it. I'm right there with ya!

terri w/2 said...

Minnesota Mom;

My twins were born a week apart, at 25 and 26 weeks, first one vaginally, second one emergency c-section. The first daughter had a grade IV IVH - (I've written about her quite a lot here, so won't get into needless detail), however, as soon as she was born, I was hit with Mag Sulfate to stop the contractions. It worked. But, my second twin, born a week later has Asperger's and NLD (also CP) but did not have an IVH. We thought too, that she would be fine FINE, as she didn't have an IVH like her sister. Well, if you've read the comments here at the preemie experiment, she's not fine at all.

So - yes, mag sulfate here, autism here, prematurity here.

When J was diagnosed with asperger's and NLD the neuropsych said he "sees lots of preemies."

I am wondering also though about the constant disruption of the sleep/wake cycle - the 24 hour non-stop "care" that often involves pain. Sleep deprivation among adults has been known to cause frontal lobe (decision-making, emotion, impulse control) problems. . .what IF because our babies have constant interruptions to their sleep patterns (and they DO in the NICU!) What if, this is causing damage to their frontal lobes during the time when their brains are rapidly developing, resulting in the autisms?

Good to have you here! I'm also from the Upper Midwest. teresaroseb@yahoo.com if you want to communicate.

Helen Harrison said...

Welcome "Minnesota Mom"!

Magnesium Sulfate appears to be one of *many* potential causes of brain damage in preemies. Other tocolytics are also potentially harmful to the fetus. So is trying to keep a baby in the womb when "nature" is trying to end the pregnancy.

But being *out* of the womb prematurely isn't too good either. When baboon babies from healthy pregnancies are delivered (by researchers, via c-sec), simply the delivery itself and the exposure of the immature fetus to the outside world causes brain damage.

Then come the NICU interventions. Those with the most evidence against them *at the moment* are:

1) mechanical ventilation (brain damage worsens each day the baby is on the vent;

2)post-natal steroids (or multiple rounds of pre-natal steroids)-- drugs that were already *known* to be neurotoxic when they were widely introduced into use in the late 1980s/early 1990s;

3)high oxygen levels (which used to be considered "good") have also been linked with poor outcomes.

Then there is aluminum poisoning from TPN fluid (subtract 1 IQ point a day), and nitric oxide and...well, I could go on and on here.

But the result is a huge upsurge in autism, and other serious disabilities, around the world fueled, at least in part, by NICUs.

Helen Harrison said...

To Minnesota Mom:

PS: How do we get to your website?

The Preemie Experiment said...

Minnesota Mom,

Oh I am SURE there is a link between autism spectrum disorders and prematurity.

I have been a part of large on line preemie groups for many years. Many of them either have, or are searching for, a diagnosis on the spectrum. I say "searching for" because many times our little ones do not quite fit into a specific category so they do not get a diagnosis.

My daughter was diagnosed, by a psychiatrist, at age 4. The psychiatrist was baffled. She told me that she had been talking to colleagues about my daughter and they told her that many preemies are not fitting on the DSVM. She finally diagnosed my daughter with PDD-NOS. She took the diagnosis away the following year stating that she no longer fit enough of the criteria. I was so frustrated. Taking away the diagnosis doesn't mean she is better!! Now what?!?!?

The culprit... Helen listed the damaging treatments (thanks Helen). Who knows which ones causes what. What I do know is that we all can't stay in the shadows or these treatments will continue on future preemies. When I was pregnant with my son I was dilating very early on. I ended up in the hospital with PTL (I wasn't feeling it). I refused Mag. I made them note it on my chart (computer) before I would let them discuss anything with me. Boy were the nurses angry at me. One of them said, "I can't believe you would be so cruel to your son." to which I replied, "I can't believe you would harm my son!" He was already going to be born at 36 weeks (due to risk of uterine rupture). I was 33 weeks at the time.

I think the biggest culprit is pre and post natal steroids. I do not have any hard facts to my statement, just years of talking with parents. When my water broke with my daughter (25 weeker), I was at 23.0 weeks. I was given so many shots of prenatal steroids that I lost count. I am pretty sure they were every day of the 2 weeks before my daughter was born. And, 8 years ago (like your child), it was very common to give postnatal steroids to preemies.

Can you imagine how much of a pain I was to the docs when I was pregnant with my son!! I ended up giving in to one round of prenatal steroids but refused any more. When it became apparent that by son was going to be born before 36 weeks an amnio was done to determine lung function. It came back showing underdeveloped lungs and we were told that he would need help breathing when he was born. (I questioned the test because the sample was not taken near his mouth-long story) When I refused more steroids my doctor was not happy but honored by wishes. He was born the same day as the amnio was done. He came out not needing one single bit of respiratory intervention! The test was wrong.

Munkeesmama...

"She looks fine to me" has to be the worst statement someone can say to a preemie parent. I will be devoting a post to it soon.

By the way... we also call my daughter "monkey". Before she could walk, she could climb and she would swing from door handles!

Helen Harrison said...

To All:

Whenever a local or national paper runs a story about autism, please consider writing a letter to the editor pointing out what you are saying here -- that so many preemies have autism -- a fact that almost never shows up in NICU follow-up, because most follow-up ends to early for such a diagnosis to be made.

We really need to get the word out -- and it would be better if it is not me who does it, since I've already done my share of speaking out, and people are tired of hearing from me.

Here, for example, is my letter to the editor of the New York Times, published October 24, 2002, under the heading of "On the Trail of Childhood Autism" (BTW, it appeared next to one submitted by Hillary Clinton, so she may be an ally in this fight).

To the Editor:

Two related factors deserve investigation as possible contributors to the rise in childhood autism (front page, Oct.18): the increased survival of extremely preterm infants and steroid drugs given to prevent or treat the lung disorders of prematurity.

Extremely preterm birth is now known to interfere with normal brain development. Recent research also shows that steroids are toxic to the developing brain.

As the mother of a prematurely born child with autism, and as a participant in research on the outcomes of prematurity, I have been struck by the number of preterm and steroid-exposed children who are found to have autism disorders.

Steroid drugs were never properly investigated for safety or efficacy in children before being given to tens of thousands of preterm infants, beginning in the late 1980s. By conservative estimates, steroids given to fetuses and newborns produce 2,500 extra cases of cerebral palsy and neurodevelopmental impairment in the United States each year.

Could autism be part of this picture?

Helen Harrison
Berkeley, California
Oct 20,2002

****
Another point: many pregnancies thought to be at high risk go to term. But because they are "at risk", the moms are given steroids throughout the last trimester of pregnancy. Could this explain the rise in autism among term-born children?

The recent tragic suicide of Nikki Bacharach, born prematurely (in the pre-steroid era), and afflicted with Asberger's syndrome, has put this topic in the news.

Anyone want to write a "My Turn" piece for Newsweek?

Another possibility is that we could write a group letter -- this is more difficult(each signer would have to contacted individually by the publisher), but it could be done.

terri w/2 said...

Helen;

It is funny that you should mention Newsweek's "My Turn" - this has been in the back of my mind for a few years now, and recently I thought, hey when I graduate from nursing school is when I should do it. I find though that when I write to those in the know, I don't have too much difficulty writing - but when I try to tell my story to the typical public that doesn't know about preemiedom, it is a challenge - too close I think. But yes, what a wonderful forum for this!

I have saved Fern Kupfer's Newsweek "My Turn" article that appeared back in '97 when she talked about her severely disabled son who they ultimately ended up placing. .she was so controversial by advocating FOR institutional placement, and had the tremendous guts to say "home is not for everyone".

Helen Harrison said...

There is a very interesting "My Turn" in this week's Newsweek discussing the grieving process when the predominant emotion felt by the "bereaved" is relief.

The author mentions her own situation on becoming the relieved widow of an oppressive and arrogant physician husband. She then discusses other situations in which relief may be a predominant emotion. Here is a quote:

"Relief when a child dies feels particularly shameful, yet who could criticize the couple whose baby, if he had lived, would have required round-the-clock nursing care? Or the mother whose severely mentally retarded preteen daughter died during an epileptic seizure? A woman whose mentally ill teenage son committed suicide still grieves the brilliant child she raised, but doesn't miss lying awake wondering if this would be the night the phone would ring with grim news."

The entire piece can be found at
http://www.msnbc.msn.com/id/16720752/site/newsweek/

Helen Harrison said...

To Lori and anyone else who can help:

If you are still reading this thread, can you post me either personally at Helen1144@aol.com or post on this blog and tell me what, if any, organizations were helpful to you after the loss of your twins?

I have been contacted by two neonatologists, one in Israel and another in the UK who are wanting to know about support for parents after neonatal loss and also about how/if hospitals here have a protocol for helping greiving parents.

Thanks for any help you can give!

Jen_miracles said...

Just found this blog, and am enjoying reading it although there are some painful and thought-provoking issues for me here. I'm a mom of 2 preemies (born at 29 and 27 weeks, respectively) and my 29 weeker is 5 and diagnosed with PDD-NOS. AND I had preeclampsia, which means mag sulfate. So yes, hit me with the triple crown as well of mag, prematurity, autism disorder.

And to confound the situation even more, my 27 weeker (with whom I also had mag, and he was in NICU for twice as long, etc) is much more "fine" so far. He's almost 3 now, so time will tell, but.....when people look at my boys, they tend to say (either out loud or to themselves) Why is the older one autistic and the younger one not? Wasn't the younger one a micropreemie and born earlier?

Anyway, just wanted to throw in my thoughts, thanks for listening. And BTW, we're former MOD ambassadors, and I know we're guilty of the "my kids are fine" syndrome. Shame on us, I know I could have done more........

Anonymous said...

Wow, finally a place where we can honestly post about our lives with our preemies. I recall being thankful for NAROF, now I am thanking you. My son was also a WKO "ambassador" however after my honest account of his life during the walk for fundraising, suddenly we didn't hear about the other events over the rest of the year. I guess they didn't want the truth after all. I did call him a miracle because on one level he is. He has greatly exceeded expectations. But catch up. normal, just like his FT peers. Not going to happen in his life time. The cost, well all I can say is that the last couple months have been such a revalation to me. I recently gave his father custody so his services and school would remain constant in spite of me moving. I cannot believe what life I had forgotten was out there. It had been so long since I was able to live, I had lost even the ability to know that living was possible. I still miss him, and see him often (weekly and every other weekend and many vacations). But living, wow. I lost that concept for over 10 years. Thanks for making a place for that honesty to be welcomed.
Hugs,
Tracy mom to Stephen, 33 weeker now 10 with multiple disabilities

Anonymous said...

...please where can I buy a unicorn?