Saturday, July 11, 2009

Thoughts From A Pregnant Preemie

Just to provide a little background, I am 26 years old, and I was born at 29 weeks gestation weighing 3lb 13oz. I was in the NICU for nearly 100 days before being brought home. My mother also had a second daughter two years after me, who was born too early to survive.

From the day I found out I was pregnant, I felt my joy and excitement tempered by worry. My mother had preeclampsia and recent studies have suggested a hereditary component which might put me at a higher risk of delivering my child prematurely.

I feel like most people don’t understand the challenges that I have faced as a preemie, since it has left no visible scars on me. As a result, no one seems to understand why I am terrified that my son will make an early entrance “because look at you, you’re just fine.” Either they don’t understand what kind of issues preemies can suffer from and think they’ll be just like a full term baby only smaller, or they think I’m being paranoid and shouldn’t be borrowing trouble.

I’ve never found that hiding my head in the sand solved any problems, and I want to be as prepared as possible in case my son does need to make an appearance early. It’s true that there have been tremendous strides in the care of premature babies since I was born, but the media tends to gloss over the real facts like survival rates and disabilities, while focusing on the ever-smaller miracle babies who pull through. I wanted to make sure I understood all the hard facts so that if there were any decisions to be made, they wouldn’t be based on emotion or popular misconception.

It really frustrates me though when people simply don’t understand the reality of having (or being) a preemie. They see the success stories, or are assured by doctors that preemies catch up by age two. No one seems to pay any attention to the ones that don’t. It makes me so angry when I see women in their third trimesters (or even second trimesters!) talking about how they can’t wait for the baby to be out because they are so uncomfortable, or begging their doctors for an early induction. At least in my mind, my baby’s health is far more important than any amount of pregnancy discomfort that I will suffer; I will gladly endure whatever’s necessary to keep my son inside me until it is safe for him to come out. Will it be difficult? I am sure it will be. Pregnancy is no picnic for most women, but who ever said that being a parent was easy? It’s all about making the best decisions you can for your child, and that means putting his/her health ahead of your comfort.

On a pregnancy message board I frequent, they have a tradition of celebrating “V-day” when they reach 24 weeks, or viability day. It makes me so frustrated to read those posts because most of the women seem to feel that once they’ve reached that point, they are safe. Their children will be fine, just a little small. I wish there was some way to show them the reality of a 24 week preemie, the heartache of the NICU roller coaster, and the possibility that their child still may not survive or be severely disabled. It boggles my mind that people can truly believe that a fetus just barely halfway through a normal pregnancy would be just fine if born.

Am I being negative? I think that I’m being a realist. Some children who are born as early as 24 weeks may suffer very few visible effects of prematurity, or they may not appear until adulthood. I can testify to that. But the majority of babies born this early in pregnancy will have lasting issues and many will die; I don’t see that as a milestone worth celebrating.

I’m currently in my 26th week of pregnancy, and aside from having a few scary moments in the first trimester when we thought we were losing the baby, I’ve had a fairly normal pregnancy so far. Due to my family history, I’m being carefully monitored for any warning signs. Every time I feel my son kick or move inside me, it’s the most wonderful feeling in the world. I would do anything to keep this little one safe and healthy, and in the womb until he is fully developed and ready to be born.

I just wish there was some way to help more people understand what a serious issue prematurity is. Kudos to Stacy for helping to show people that there is another side to prematurity other than the warm fuzzy one that the media chooses to publicize.

When I was a little girl, my mother always told me not to wish my life away when I said I wanted to grow up faster or be older. Now that I am pregnant with my son, that comment rings even truer for me.

Susan


**Note from Stacy... Ok, before you click on "publish your comment" please keep in mind that the person who was brave enough to share her thoughts with all of you is PREGNANT, in a high risk pregnancy no less. Do NOT sling drama her way. If there is a topic within her post that you would like to discuss further, please post your request in the comments or email me and I will gladly make an entire post out of the topic.**


30 comments:

Anonymous said...

Helen Harrison writes:

Susan, I share your concerns about the widespread and overly optimistic views of prematurity. Expectant parents need to know that the true "V-day" is at term.

I have just forwarded your post to a neonatologist friend of mine who is doing his best to inform the public and the families in his care about the realities of prematurity, especially extreme prematurity <27 weeks. I'll let you know his reactions.

Wishing you and your son a healthy and happy additional 14 weeks of pregancy,

Helen

Saffy said...

I want to hug Susan. Really. As the mom of a 25 weeker who wasn't one of the "miracle babies" I agree that the media and fairly naive mommies to be tend to gloss over the stats and focus on the one kid who makes the cover of some magazine for their miracle survival story. I too am pregnant, just over the 31 week mark, and also belong to message boards that talk about how 24 weeks = viability and how they just have "a bit of growing to do". I've given up trying to correct this misinformation. I have finally concluded that unless you have been personally touched (or cynically I could say scarred) by the prematurity rollercoaster, then you have no idea of just what it is. Thank you Susan for your honesty and balance. I wish that there were more well written words like yours out there. All the very best for a long pregnancy :)

Anonymous said...

Susan, Congratulations on your pregnancy and thank you for sharing your perspective. I am the mother of a daughter born at 26 weeks and 3 days. While she's done amazingly well so far, my husband and I remain concerned about the long-term effects of her premature birth. Needless to say, it's reassuring to read of your pregnancy.

On another note, have you always been aware that you were born prematurely? Was it something that you remember being told or was it just a part of your story?

Thanks and best wishes for a healthy and long pregnancy.

Jenn said...

Great post. I have been a NICU nurse for 11 years. After discovering the blog world i wanted to find out how things really are for parents that take home the 23-32 weekers. I have enjoyed your blog and getting a look at what things are like after the NICU. I have been readding for a while, but never posted anything. Glad your back :)

tomandcheryl said...

ugggh, I just felt the need to post because I share with you the annoyance about people that say "I can't wait to get this baby out" or "I picked my induction day." I want to say, "BASED ON WHAT?" I am so annoyed with arbitrary inductions. I have an OB that will not even say the "I" word unless you are 2 weeks "late." I am a firm believer that baby comes when baby is ready so I was thrilled when I found her. My son had to be induced 5 weeks early when I was admitted with severe pre-E and HELLP Syndrome. I was petrified even though I was "only" 5 weeks early. 5 weeks early proved to be premature enough. My son was born with immature lungs and it was the scariest time in our lives. It scares me into ever having another pregrnancy. I wish you luck for the next 14 weeks....yes 14 weeks. may you carry this baby for 14 more weeks and feel his or her kicks all to yourself.
Goodluck.
~Cheryl

Kathy said...

Thank you for sharing, Susan!

I agree with everything you said, and can relate to everything you're feeling. I'm currently 14 weeks along with my second baby. My daughter was born at 31 weeks due to HELLP and severe preeclampsia.

The normal, healthy pregnancy boards drive me BANANAS! The worries about things that don't really matter, the complaints about things I would have killed for in my last pregnancy (stretch marks, huge belly, etc.) and most of all, the impatience! Women who say that they can't wait for the baby, or start saying things like "I'm afraid this baby will never come!" at 37 weeks... ugh. What I wouldn't give for those kinds of problems!

I find the "V-day" thing shocking. During my first pregnancy, when I didn't know any better, 24 weeks is when I heaved a huge sigh of relief and got very excited about the baby. This time, I think that when I hit the age of "viability" is when I'm going to start really freaking out. Now that I'm aware of how difficult life is for micropreemies, an extremely premature birth scares me far more than the idea of a miscarriage.

I sincerely hope that you get a healthy, happy, 40 weeks. Or more!

tbonegrl said...

Thank you for your post. While I don't come from your same background/insight, I wonder if I will feel much the same way with my (hopeful) next pregnancy. I am scared to death that A) I'll have another placental abruption and won't be at the hospital already/won't have a similar outcome or B) Will have another preemie. [or both] Even though my boys were 32 weekers, our struggles have been great in the short 2.5 years they've been alive.

Thanks for your insight!

Bec said...

Hi Susan, firstly I wanted to say Congratulations on your pregnancy! And to wish you many more uneventful weeks of pregnancy.

I share your frustration, my cousin who was pregnant at the same time as me, tried to force her OB into delivering her twins from 33 weeks because she was uncomfortable at the same time my 26 weeker was laying upstairs in the NICU.

I also agree with you about the media. While it's lovely to see the ones who do survive, as premmie's mum it's hard not to feel alone because my daughter *didn't* catch up by two.

Kathy said...

Evidently we hang out at the same pregnancy website, Susan!

I recently graduated to the 2nd trimester board, and today saw my first "V-day" post.

I'm absolutely nauseous over it, but obviously can't be the voice of doom and gloom.

I should just stick to preemie and high-risk boards from now on. Or, better yet, real-life people! ;-)

KristieMcNealy said...

Wow. I can totally relate to every word you wrote. I'm currently 9 weeks pregnant with our 4th child. Thankfully, our last made it to term, but even that time I went into preterm labor and spent a month on bedrest.

The media and the general public is way too good at the "well she/he looks fine" line. Yes, my girls do look good now, but my 31 weeker hasn't started school yet, and we can only guess what might lie in her future. Between her moderate BPD, and the potential for school problems, there are still plenty of concerns luring in the background.

I feel for you, and all of your concerns. Thanks for the very well written post!

-Kristie

Kelly said...

Thank you, Susan, for your post. I also have the same question as Anonynous: Have you always been aware of your prematurity--from a young age? Was it something that was pointed out often, or simply a part of who you are?
The reason I ask is that I have a family member whose daughter was born at 31 weeks, with a great deal of complications (some still lingering). Now that she is 5, she will tell you that she is a preemie and that the angels kissed her because she is so special. The first time she told me this I was, honestly, uncomfortable. I know she is special because of what she and her family have gone through, but it seemed that she is still defined as a preemie. As the mother of a micropreemie, I struggle with just this dilemma: how will I guide my daughter to define herself?
My daughter was born at 25.5, and will be 3 soon. She is still in speech therapy (after graduating from occupational, physical and play therapies) and is now having problems with her immune system. So, I guess my concern is, how do I present her prematurity to her? It's a question I haven't thought of before, but your post has made me realize that her prematurity is a part of who she is, even though I don't think I want it to be all of who she is.....
I hope this wasn't too rambling, but your words are so poignant and heart-felt, they really spoke to me. Thank you.

Kelly said...

I also wanted to comment on some thoughts I had about the "V-Day" thing. During my first pregnancy (full-term), I was a part of message boards, but must have glossed by the "V-Day" parts (although, it was 10 years ago, so maybe I just don't remember!). But, in light of Susan's comments, it really made me think....
We were told that we needed to tell the neonatal team what to do if our child was born before 24 weeks--if she was breathing, did we want her to be vented; if she wasn't did we want heroic measures to save her? These are not questions we were anywhere near ready to answer!! We were given very grave statistics for survival before 24 weeks--and relatively optimistic numbers for survival after 24 weeks. I asked what was so "magical" about 24 weeks. It seemed to me that early was early and early was bad. I could not seem to get any solid answers so I asked to speak to the chief of the neonatal unit. A day later, he came in and simply told me that, based on research, the odds greatly improve with each day past 24 weeks that a baby can remain in utero. Some of it had to do with lung, heart and brain development. Some was still uncertain (according to him) as to why the statistics jump so much at 24 weeks. At one point he said that there was no way to guarantee our child's survival at any point in the pregnancy. My husband found this terrifying, but I found it comforting--which I know sounds odd. I needed someone just to be honest-not throw around a bunch of numbers to make me think that if we could hold out unitl 24 weeks, everything would be fine. I deal better with things when I know I'm not being told the Pollyanna-ish scenario. Just give me the honest truth (wherever it lies on the continuum) and let me deal with it.
And I think that this is where the "V-Day" thing comes from. It gets lost in all the pregnancy boards that each day a child can remain inside the womb is a day to be celebrated--each and every day. When we're pregnant it's all about the numbers: how much weigth gain (or lost), how many weeks, the baby's heart rate, my blood pressure, my fundal height, etc... So, it seems natural to want to focus on a number of week to relieve the fears of a preterm birth. But, in reality, it does no good. Babies do great and thrive when born before 24 weeks (one of my daughter's NICU roommates was born at 23 weeks and went home before Mia and has needed no therapies). Babies never make it home when born much closer to term. Yes, the majority of pregnancies are full-term with little to no complications. But, what about the rest of us? There just seems to be a need for balance--don't dwell on the numbers and horror stories, but don't see only the warm and fuzzy side to pregnancy and birth, either. We seem to live in a society that works best under extremes, but children are not born at only one end of the continuum.

Anonymous said...

Helen Harrison writes:

I have just seen a study In "Pediatrics" from the NICHD entitled "Unimpaired Outcomes for Extremely Low Birth Weight Infants at 18 to 22 Months" which contains some rather shocking (to me, at least) information, indicating that current outcomes are even worse than I thought.

[Gargas, Vohr, Tyson et al. Pediatrics 2009:112-121.]

This study looked at outcomes (both by gestational age and birthweight) of 5,250 children born weighing less than 1000 grams between 1998 and 2001 in NICHD study hospitals in the US.

"Unimpaired" was defined as Bayley Scale scores equal to or greater than 85, a normal neurological exam, normal vision, hearing, swallowing, and walking.

This study offers a new perspective on outcomes since "mild" (and sometimes "moderate")disabilities -- which most of us parents would consider fairly severe -- are lumped in with "normal", "unimpaired" outcomes when neonatologists and other professionals give outcome information to parents.

This is, as many of us have learned the hard way, highly misleading.

So the NICHD researchers set out to record just how many children were actually free of impairment by the criteria above, at age 18 to 22 months.

We parents also know that 18 to 22 months is much too early to determine some pretty devastating outcomes of prematurity -- autism, for example -- so even these numbers may be overly optimistic.

Here's what they found:

Less than 1% of children born weighing less than or equal to 500 grams survived to be normal(that is, "unimpaired" at 18-22 months).

From 501 to 600 grams it is about 5% unimpaired;
701-800 grams about 15 % unimpaired ;
increasing to 24% for infants 901-1000 grams.

By gestational age: <1% at 23 weeks are unimpaired;
< 5% at 24 weeks;
about 15% at 25 weeks, and
about 24% at 27 and 28 weeks.

(I'm reading some of this from a graph so I can't cite exact percentages.)

After 27-28 weeks gestational age, infants born at 1000 grams or less are small for gestational age as well as premature -- an additional risk factor -- and the percentages of unimpaired decline again, so that, for example, less than 20% of children born at 31 weeks weighing 1000 grams are unimpaired.

This information has got to get out to the sadly misinformed parents on the pregnancy boards.

Helen

Kate K. said...

Susan,

Thank you for sharing your thoughts. I too was born 3 lbs 13 oz but at 33 weeks. Best wishes on an uneventful, healthy pregnancy!


To the group re: v-day,

I hadn't heard of v-day before reading this post. I can understand the desire to celebrate certain milestones, and viability is one of them. Perhaps people aren't celebrating it in the way it is generally being interpreted in this discussion. I would assume they are celebrating that they have made it to a certain point, not because they are ready to have the baby then and there. It is kind of like ending a semester as an undergraduate. You celebrate that you've passed your courses, but that doesn't mean that you've earned the degree yet.

I had a 25 weeker. I'm very happy for my friends when I know that they've made it past 25 weeks. It isn't that the babies ready to come out yet, but it just makes me happy that they've made it to that point without problems and hopefully they will make it all the way to 38 weeks. One of my friends is having twins. I was so pleased to hear last week that her smallest twin is estimated 4 lbs 11 ozs at 32 weeks. That was the size my son was when he came home 5 days after his due date. I feel like that's something to celebrate even though she still has almost 2 months to go.

To all of you who are pregnant,
Congratulations! I also wish you uneventful, healthy, "normal" pregnancies. Treat yourselves well. Rest when you need to rest. If I ever become pregnant again, I'm going to splurge and get weekly massages during the second and third trimester to keep me relaxed. :)

Kelly,
Your question about how much to discuss being a preemie is an interesting one. I always knew that I was a preemie but I didn't know that it was a negative. My dad would tell my NICU story every birthday. I was pretty much unaffected by the prematurity. There are three areas where it may have affected me but it is hard to "prove":
(1) Muscle development. I think that my arm strength was particularly weaker than other kids until about junior high. By then, I was on the tennis team. I wasn't a stellar athlete, but I was better than average by high school. My mother says that my gross motor skills were slightly behind my adjusted age (not that they discussed adjusted age back then).
(2) Lungs. I often refer to my lungs as "crappy" lungs. When I live in cold climates, I'm particularly susceptible to bronchitis. Hard to say whether this was due to prematurity or genetics. My mom has bad lungs too (she wasn't a preemie). But she was a smoker from age 14 to 37 years old, so I've often suspect that her poor lung capacity stems from smoking.
(3) Higher pain threshold than normal. I don't think that it is quite as high as my son's, but I've known for a long time that my threshold isn't average. For example, I refused pain medications after gall bladder surgery in 2002 and after my c-section in 2007. The medication was unnecessary for me.

We stopped referring to our son as a preemie in his presence when he was a month or two adjusted. We don't want prematurity to define who he is. But if he ever shows long-term problems associated with prematurity, I think that a detailed discussion will be unavoidable. Right now, he is doing very well. His therapies are down to just PT once a month for some monitoring of his arm movements when he runs and toe walking.

Best wishes everyone.

KristieMcNealy said...

Thoughts to those wondering what to tell their own preemies:

Our 31 weeker is 3 1/2. She hasn't had any serious prematurity related medical problems in about 2 years (needing O2, hospitalizations, etc), so she really had no memories of any of it.

What we do have though is pictures, and she is at the age where she asks questions about them. She also has some scars which raise additional questions. I'm hardly going to hide them, so I guess she knows now. At this point she seems most interested in the fact that she is the only one of our kids that was in the NICU. I'm sure her interest and questions on the topic will evolve over time. I don't see any harm in that.

Knowing does not make it their identity. In fact, prematurity has lifelong health risks, like increased risk of serious kidney disease, pregnancy problems, etc. It's like any other part of their medical history. It's important to know.

-Kristie

Scott said...

Wish you all the best and hope you have the least stressful third trimester.

Anonymous said...

Susan - Thanks for sharing your insights. I hope the next 14 weeks is uneventful. My DS was FT after my 29 1/2 week DD. He was due in late June. Everyone around me thought I must have been miserable experiencing summer heat while 9 months pregnant. Nobody got that it hurts a lot more to see your baby in the NICU than to waddle around in 90+ degree heat.

I was originally disgusted when I read of V-day, but reading some of the later comments, I am reconsidering. I think it all depends on what is meant.

My ex-preemie DD is now 8. Her prematurity has impacted her only in subtle ways, so it is not something that is a big issue in her life, at least right now. She does know she was born early. How could she not, given what her baby pictures look like? She can see there is a difference between her baby pictures and those of her little brother. Then there are things like the NICU reunions. We have been to 2, so she has learned about things like isolettes there. DH and I think, it is part of who she is, so she should know about it. It does not define her, by any means. She does like to look at her baby pictures periodically and she uses the tiny afghans her grandma made for the isolette as doll blankets. On the other hand, she gets bored by my pointing out the preemie size sleepers at Walmart and telling her how they would not fit her when she was born. DD would much rather browse the video game aisle than humor me with a walk down memory lane. Given that DD's prematurity could impact her future health, I will make sure that DD knows about her medical history when she is old enough to take more interest in it.

Paula

ThePreemie Experiment said...

From Susan...

With regards to my prematurity, my mother told me that I came early and that I was so small I lived in an incubator at the hospital until I grew big enough to come home. Beyond that, I never really understood much about prematurity until I got older and began to struggle with my issues. I still honestly don't believe that my mother understands what it really means to be a preemie- she's part of the group who tells me not to borrow trouble and that I turned out fine.

I wish she would have taken the time to educate me a little more about my prematurity because it would have saved me a lot of heartache and feeling like a failure when I had difficulty doing things that other people did. Instead, I wound up suffering from depression and feelings of inadequacy. It was only when I finally began to receive diagnoses in adulthood that I felt more comfortable with myself, my achievements, and my limitations.

I agree that being a preemie shouldn't be your whole identity, but one way or the other, it needs to be there. It's part of who we are and it has lasting impact in our lives, whether we can see the effects directly or not.

ThePreemie Experiment said...

We have always been open with Paige regarding her prematurity. Honestly, it would have been impossible for her to grow up not knowing about her birth history since she has had more doctor/specialist appointments than the average person has in their entire life time. We have never put an emotional value on her history when talking to her or to doctors. We've made it quite matter of fact even when well meaning medical students gasp in horror while giving her history.

Being able to talk openly with Paige has made it possible for her to understand that what she was experiencing was not her fault, especially when it comes to mental health issues.

ThePreemie Experiment said...

Congrats to everyone who is expecting! In case anyone has not found the group yet, there is a wonderful yahoo group for parents who are pregnant after having a preemie. I think you can find it by searching pppg in yahoo groups. If you can't find it, please email me and I'll send the link. Unfortunately I'm out of time this morning to look it up. :-)

Kathy said...

http://health.groups.yahoo.com/group/pppg/

Anonymous said...

RE: Helen's post about Gargas, Vohr, Tyson et al. Pediatrics 2009:

Helen noted that "'Unimpaired' was defined as Bayley Scale scores equal to or greater than 85, a normal neurological exam, normal vision, hearing, swallowing, and walking."

One problem that I have with reading preemie studies is how they categorize disabilities into larger categories. Helen noted that some "mild" or "moderate" disabilities may not be considered "mild" or "moderate" to the person or parent of the preemie who has them.

I have been frustrated with studies that categorize serious but not insurmountable disabilities as severe. When I hear the word "severe," I interpret it as something that would make one perhaps reconsider providing extended support for the baby. For example, if one knew that a child would be in chronic and intense pain with almost 99% certainty, that may change the course of action that I would choose to take in keeping the child alive. What surprised me with some studies that I read long ago is that they categorized the need to wear glasses as a "severe" impairment. At least to me, that's not in the same league as chronic and intense pain or other disabilities that may prevent the person from living independent and/or happy lives.

Consequently, I don't know how to interpret the statistics in the Gargas et al. article when it says that 85% of 25 weekers will have an impairment. If the majority of those impairments can be aided with glasses or hearing aids, then I would interpret the impairments as serious but would not hinder decisions for ongoing support for the neonate.

Are there articles that breakdown the "impairments" so that parents can truly make sound decisions regarding their preemies?

==Kate K.

Anonymous said...

Helen Harrison in response to Kate K who wrote:

"What surprised me with some studies that I read long ago is that they categorized the need to wear glasses as a "severe" impairment."
***

I've never seen anything in the follow-up literature (and I've read most of it) that would label wearing glasses as a "severe impairment."

The study by Gargas et al. does give some specific indications of what they meant by "mild" vs. "severe" impairment and the extent to which each was present in various groups of ELBW children from <23 weeks to 31 weeks gestation.

For example, having an MDI (analagous to an IQ score) of 70-84 was considered a "mild" impairment.

Having CP and needing an assistive device to walk was considered "mild" CP and only a "mild" neurological impairment.

Vision or hearing loss was present in a very small percentage of the mildly impaired children -- about 12%. By contrast, 70-84 MDI (mental development index) was present in 70% of the mildly impaired.

"Mild" neurologic abnormality was present in about 35-40%.

(Keep in mind this is a cohort that includes children up to 31 weeks gestation.)

By the criteria used in this and many other studies, my son would have probably been designated as "mildly" impaired at 18 to 22 months.

Today at 33 years of age, he needs one-on-one adult supervision at all times and has many, many problems of prematurity that seem to us quite severe.

I'll get back with more details on the study as soon as I feed my son his dinner.

More to come...

Helen

Anonymous said...

Helen Harrison, back again after dinner:

The study I referred to involves 6090 inborn ELBW infants who ranged in birthweight from 401-1000grams.

These babies were born at 19 centers in the NICHD Network between 1998 and 2001, which includes such medical centers as Case Western, Duke, Stanford, UC San Diego, University of Texas,Houston, University of Tennessee, Yale...

Of these 6090 inborn ELBW babies, there were 886 deaths in the first 12 hours and an additional 1132 deaths after the first 12 hours and before discharge. 82 deaths occurred after discharge, for a total of 2100 deaths by 18 months.

5250 children out of the 6090 had outcomes that were known at 18 months,and 3150 survivors were formally evaluated between 18 and 22 months of age.

Children were classified as unimpaired if they had Bayley Scale scores (MDI and PDI) of 85 or above after being corrected for the child's degree of prematurity, a normal neurological exam, normal vision, hearing, functional ability to swallow, and ability to walk.

CP was classified as "mild" if the child was able to walk with an assistive device, "moderate" if the child was able to sit independently or with support, and "severe" if the child was unable to sit with support.

"Mild" impairments were MDI or PDI scores between 70-84; "mild" CP; mild other neurologic impairment, unilateral hearing loss, unilateral blindness, or minor sensory impairment.

Severe NDI (neurodevelopmental impairment) was defined as Bayley scores (MDI or PDI) below 70, moderate/severe CP, bilateral blindness or bilateral hearing loss requiring amplification.

Children who could not be assessed because of severe developmental "delay" were assigned a score of 49.

Of the 5250 infants with known outcomes at 18 to 22 months, 850 (16%) were unimpaired, 1153 infants had "mild" impairments (22%), and 1147 had NDI (neurodevelopmental impairment, i.e., moderate to severe outcomes), with 2100 deaths (40%).
(I know, it doesn't add up to 100% but those are the percentages given in the article.)


Of the infants classified as unimpaired, 4% had MDIs above 115, 96% had MDIs between 85 and 115. Among the mildly impaired children, 68.4% had MDI's between 70-84; 30.4% had DQs between 85 and 115; 1.2% had DQs over 115. 12.4% had a visual impairment, 1.8% had a hearing impairment. 35% had some neurologic abnormality (either mild CP or "tone abnormality" or "other") 85% were walking independently.

The information by gestational age is given in a bar graph that is hard to read precisely, but:
At 23 weeks or less, 1% or below survived unimpaired. At 24 weeks its about 5-8%. It's about 15% at 25 weeks and about 18% at 26 weeks; at 27 and 28 weeks its about 20-25%, and then the "unimpaired" numbers start to go down again at 29-31+ weeks (when the risks of "small for gestational" age start to factor in).

By far, the most widespread disability in this group is cognitive impairment -- retardation and near retardation. This situation may worsen with age in preemies, according to neurologists, who are finding declines in IQ by 9 to 12 points between childhood and adolescence in otherwise unimpaired preemies. (Isaacs,et al. Brain morphology and IQ measurements in preterm children. Brain 2004,127, 2595-2607). A rise in psychiatric problems also occurs at this time, and both the IQ and psych problems are thought to be delayed developmental reactions of the brain to the damaging conditions and treatments surrounding preterm birth -- a negative form of "brain plasticity" as one neurologist (Dr. Mark Scher at Case Western) has described it.

The point is that 18 to 22 months is a bit too soon to talk definitively about "unimpaired" outcome.

I think this is all important information to get out to the moms on the pregnancy boards who think preterm birth is no big deal.

Helen

Anonymous said...

P.S. from Helen:

If anyone would like to see the the article from Pediatrics please contact me at Helen1144@aol.com.

The article from Brain is available online for free.

The lecture by Dr. Mark Scher in which he discusses neurological issues in prematurity and neuroplasticity can be found at www.onlinecelibrary

It costs 15$ to download the lecture, and it is technical in places (helps to know about the functions of chloride and GABA in fetal neurons), but still highly informative and relevant to all of us.

Helen

Kathy said...

I don't think that the pregnant moms think that prematurity is no big deal (any more than most Americans do from watching TLC or Discovery Health). I mean, no one is saying, "Hey! The baby's viable, let's induce four months early!"

But for women who spend the first trimester stressing about miscarriage, it's a happy milestone. They think, what a relief, worst case scenario, my baby will live. They don't know that there are fates worse than death. And hey, let's face it, this blog has shown that even parents of micropreemies don't all agree on that!

Donna said...
This comment has been removed by the author.
MoDLin said...

Susan, the March of Dimes totally gets the dangers and challenges surrounding a premature birth. They are investing millions of dollars in research. They have a website dedicated to the issue with tons of good information: http://www.marchofdimes.com/prematurity/index_about.asp. They also have an on-line community for parents of preemies to share their experiences, resources and support: http://www.shareyourstory.org/.

Glad to know your pregnancy is progressing smoothly now. I'm wishing you a full 40 weeks!

JoDee said...

Susan I am wishing you a long and uneventful pregnancy. I worry about my girls when they decied to have children of there own some day(hopefully not any time soon). I worry for myoldest FT dd that she may also end up developing HELLP as well as for my youngest DD who was a 34 weeker because I did have HELLP. I have read a few things that girls that were premature are at a higher risk for have a preemie, but I also wonder if girls bor FT but who have a sibling born premature are also in a higher risk group to have a preemie? I was as far from preemie myself as can be born at 44 weeks but my mom had my baby brother at 35 weeks though the reason was at least not the same as mine. This makes me fearful for not only my daughter who was a preemie but also my full term daughter.

raul chitna said...

planning pre pregnancy is the best which will help the mother and child to have a healthy future


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