Preemie Survivors Have A Tougher Time Later In Life

I was browsing and found this information , which made me start the discussion.

"Preemie survivors have a tougher time later in life
Infants born prematurely are much more likely to die during childhood and, if they Preemiesurvive, are much less likely to have children of their own later on, according to the largest study of premature babies undertaken. This is tough news for Black women, who have a higher rate of premature births. Researchers already knew that premature infants faced many neurological and developmental problems, but the new findings, released Tuesday, show that the range of problems they suffer is even greater than suspected and persist throughout the child’s lifetime. The study, conducted using Norwegian data on people from the cradle to the grave, suggests that, as the percentage of premature infants who make it through their first year continues to grow, because of advances in neonatology, the number of troubled infants and adults also will rise. “Are we improving their survival at the expense of significant problems down the road?” asked the lead author, Dr. Geeta Swamy of the Duke University Medical Center. This is an important paper because it documents something we have all known in our hearts – that being born premature has enduring implications,” said Dr. William Benitz, chief of the division of neonatal and developmental medicine at Lucile.".

What is your take on this? I really dont know how to take this. I cant avoid worrying about my kid's future and related health issues.

Edited June 26, 2009 at 2:29 am

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Hmmm. We choose to take one day at a time with our son. I think that is what you have to do. There is so much research out there - some that is inspiring and some that is disheartening.

We actually just posted on his blog how amazing the past year has been (his 1 year anniversary of his homecoming from his 115 day NICU stay is at the end of the month). Our son is on O2 and has some minor feeding delays, but overall he is tracking for his milestones. Plus most importantly he is such a happy and loving boy.

I think that as parents we do the best we can. There are things we can do to help our children overcome their rough starts. We are realists, but we know how resilient these little ones are and how much of an impact "environment" has on outcomes.

The other thing to keep in mind is that the study appears to have taken in place in Norway. I am not very familiar with their Health care system so that could have a major impact on outcomes (compared to a study in the USA). Additionally, does the report provide any specifics as to the details of the premature babies, there are just so many variables (ie gestational age at birth, cause of prematurity, prenatal care, etc.) that potentially impact outcomes.

Hope that helps a little.

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There are so many other factors that many of those studies do not include-like socio-economic status, parental involvement...Its hard to ignore that research but thats what i have begun to do :)

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i agree with beckhamsmom about taking it one day at a time. If you dwell/worry about every study, every news article, every other issue, you will forget to enjoy life with your child

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My pediatrician had to tell me to stop reading studies on the Internet because reading that my daughter would have an X% chance of this or that problem when she gets older was driving me crazy. I'm trying HARD to take it one day at a time, but thinking ahead is in my nature, so some days are better than others.

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I think that it is very important to look at well done studies that may highlight differences between preemies and FT babies so that parents can be aware of various potential problems and get help IF those problems arise.

I know that most people probably pick and choose through studies to fit what they already believe. That's not just true of studies about child health, but of health in general. If you eat a lot of refined sugar, for example, you'll discount stories about its negative affects on attention span or diabetes b/c most people don't process information well if it counters the choices they've already made. That's just a sad fact of human nature.

That said, not all studies are equal. Some researchers are simply better than others when it comes to design and analysis. Some study designs fail to account for reasonable controls (socioeconomic status, etc.). The most important control, perhaps, is parenting style (at least based on the family studies literature, parenting style has been known to affect all sorts of outcomes). That's a very hard variable to measure. And it isn't measured in most studies that I've read when it comes to preemies. That doesn't mean that I discount preemie research, but I do keep it in mind.

Yes, preemies face many more challenges than FT babies. BUT there is a difference between "statistically significant" differences and "substantively significant" differences, and frankly, most researchers are so keen to publish that they forgot the difference.

Let's take IQ for example. At the outset, if a micropreemie survives, the average IQ is 88 in comparison to 100 for the population overall. Assuming a decent sized sample, a study will be able to pick up that as a "statistically significant" differences. Does that mean that a person with an 88 IQ won't live a happy, satisfying life? No! There are full-term babies with 88 IQs as well. Does that mean that all micropreemies will have 88 IQs? No! That's an average. There is going to be a range to that central tendency of 88, and it is hard, if not impossible, to predict where an individual is going to fall in the range for the group b/c there IS variation in the group.

As I mentioned before, I think that parenting style greatly influences outcomes. The studies on preemies show that preemies are more likely to be abused and neglected when they go home when compared to full-term babies. That's going to affect their cognitive and emotional well-beings. Some parents are not equipped to parent for any child, let alone a preemie. Those types of parents treat preemie special needs as inconveniences on them and take it out on the children. That's a real problem.

BTW, there was a Canadian study, I believe, that showed that preemies who survived were just as likely to get high school degrees as FT babies. And, the preemies that they tracked actually showed greater life satisfaction, more closeness with their families, and less likelihood of getting into drugs. I don't know how they sampled the preemies in that study.

RE: Norway
I believe that the U.S. has actually been shown to have worse preemie outcomes than European countries. I know that we like to think that we are the best, but in the medical field, the U.S. has been behind Europe on some notable things. I don't know enough about Norway, however, to say how it specifically compares to the U.S.

Where to go from here? Read the studies. Analyze whether it looks like the study was well done (what was the sample size? how were things measured? where was the sample drawn? what variables were controlled?). If it was a good study, keep the findings in the back of your mind in case you see something in your child's development that looks like a specialist should be seen for further evaluation. Be highly involved in your child's life. Be encouraging. Read to your child. And know that a statistical average is not necessarily where your child will be. Just as any given child probably didn't face "all" of the challenges that doctors see in the NICU, a single preemie who goes home probably isn't going to face every developmental challenge in the book. If your child does face a particular, get some assistance to find a work around.

Best wishes.

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Interesting discussion. I agree with what everyone has said. The population and circumstances picked in the study has to play a role. I re-read my post here and I'm not sure if it makes sense or if my point comes across, but I'll post it anyway!

Just thought I'd add, that life in general is really based on your perspective and how you make your choices. Some people are more susceptible to cancer, some kids are born into bad families, preemies may be more susceptible to health problems... but other things are left to chance and choices and can affect your life more significantly than those statistics. If someone is driving down the road and decides to send a text message and ends up causing an accident that kills 5 people... well, that has nothing to do with any of those people's health or how smart they are and look at what kind of impact that will have to more than just the people in the accident.

It's all perspective and how we make our choices. Just b/c my son may be more susceptible to health problems later on based on some study and statistics, doesn't mean he will or that decisions we make as parents also won't affect his quality of life. I usually try not to read that kind of stuff and just base my perspective on our lives on how I'd like things to turn out for us.

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To me it's very sad news. I can't imagine life without my 24 wker. I worry about the future, but the love and joy he brings me reassures me we can handle anything that comes our way. Its interesting to hear everyones thoughts.

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"Infants born prematurely are much more likely to die during childhood and, if they Preemiesurvive, are much less likely to have children of their own later on"

What are they saying exactly?" Well, your baby survived the NICU but don't get your hopes up because more than likely your baby is going to die at some point in the next couple of years." ????????

How many preemie babies grow up to be adults and die at a ripe old age? I would love to know how many adults out there were born preemies .

Then it also says about "much less likely to have children of their own"........are they saying that they aren't developed properly to be able to have children or that they just choose not to because they are afraid of having a preemie and after what they went through they don't want to take the chance????

My daughter's Ped. also said to stop reading things on the internet, you are only going to get yourself unnecessarily upset. I agree with beckhamsmom and just take it one day at a time. Try not to stress over the "what if's" that could happen. You will only make yourself sick with worry and not be able to enjoy what is happening today. What may happen to another baby does not mean at all that that is what is in store for your little one.
Now.....I just need to follow my own advice and not worry myself! : )

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I haven't read the study, but we know our preemies are more susceptible to health problems, more likely to have learning problems, etc. It's not surprising to me that these problems can possibly persist longer than just through the infant stage. I'm more troubled by the statement "are we improving their survival at the expense of significant problems down the road?" What's the alternative? Not doing everything we can to save a baby? Giving up on a preemie toddler who is difficult? My micro preemie shouldn't be allowed to reproduce because she will weaken the human gene pool? Okay, maybe I'm getting a little defensive, but I think scientific results need to be tempered with humanity.

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Katek-just wanted to add regarding Europe-depends what country we are talking about.
England is pretty advanced in neonatal field ,but Russia is still behind there.The doctor I know from there said"my daughter didnt even stand a chance there being born @ 27 weeks".Other medical fields do show more progress than US.
In regards to the article I agree that all different factors should be taken into account when conducting a research.
Doesnt that article make you feel a little depressed about our preemies future?

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Henrysmom - so insightful. That's exactly how I live my life, to a T! We do the best we can and move on - that's my mom's favorite cliche, but it's how I live.

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That statement really got to me too..."are we improving their survival at the expense of significant problems down the road?" My neighbor actually had the nerve to say to my husband that we shouldn't interfere with God's plans by intervening to help these preemies survive. Did it ever occur to her that God gave us the wisdom to develop these advances so that our children can live?!?! And that these medical advances can also help our children to live full and happy lives? Ugh!!

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Your neighbor may be of the belief that our babies are not actually viable (or whatever) until a later gestational age. That took me back to the arguement with a mom that basically told us that her doctor told her that our babies (my 29 weekers included) were not far enough along to save. That any baby born before some crazy later gestation was not worth the time and would be a burden on society. That is not exactly what she said (word for word), but I am sure you guys remember. That post always confused me, when it was posted on a preemie website? Not to defend your neighbor...As far as I am concerned she is an idiot and more of an idiot for telling your husband that (of all people to say that to!!). People never fail to BLOW my mind (especailly where the preemie are concerned)! Good luck to you.

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Fairfax Hospital in northern Virginia outside of Washington DC, which also happens to be one of the largest and most advanced NICUs in the country recently published a study that was extremely promising for micropreemies. The average IQ was about 102. The study is very detailed and they had a difficult time getting it published because no one believed their great outcomes. They measured a large pool of children six years of age. Medical care can really vary tremendously from center to center as one of the neonatologists told me. Parental involvement and access to resources, early intervention, etc. is also crucial to individual success.

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Regarding your question "Doesn't that article make you feel a little depressed about our preemies future?", I haven't read the details of the study so I feel rather impervious to having an emotional reaction to it.

I'm very much a statistics driven person. I teach statistics and research methods to undergraduates and graduate students. I strongly believe in quantitative research...when it is done well. In my years as a graduate student and asst. professor, I've also seen shoddy work get published. The details are very important to pay attention to. And, I strongly believe that a lot of researchers don't internalize the difference between statistical significance and substantive significance. They often pass off statistical significance as substantive significance when it truly isn't the same thing.

Also keep in mind that peer reviewed journals have a proclivity for publishing statistically "significant" findings and not what is called "null findings." That means that a researcher could do a near perfect study from a research design perspective, find that there is "no difference" (the null hypothesis), and then have a difficult time getting the "null" finding published.

Based on what I've read on development, I don't think that there's a question that preemies on average face a much tougher road and I don't think that there's really any positive benefits to being born early. But, I don't see any reason why my preemie is going to perform to the average. If there are exceptions, why shouldn't he be one of them? I can't "definitely" make that happen, but I strongly believe that parenting style and involvement matter. And there is still a lot of research to be done on the brain. I saw a YouTube clip on the brain. I can't remember the concept (it will come to me later) but it deals with the brain creating different neural pathways when trauma has occurred in a given part. There are some really amazing case studies out there that should give all of us hope.

BTW, did anyone read the People magazine article from a few weeks (maybe over a month) ago on six micropreemies from MN? They didn't have easy starts, but they are all going to college and following exciting career paths. They looked happy.

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Think positive everyone! Live one day at a time. We can't change how our babies were born...and aren't we all totally in love with our babies, regardless what we are going through?? (dev. delays, feeding issues, etc). Of course! I also agree that parenting has a BIG role in the development of preemies. I also am a Christian and believe God cando the impossible. I have seen proof of the miracles He can do!

Regardless, I don't spend time searching what "could be" of my son's future. I spend my time being the best mom I can possibly be, feed my son the best possible food, interact and teach him things to the best of my ability, and that is all I can do! I am not going to worry about the future. If I do the best I can as a mom to him, I can feel at peace with whatever happens. One day at a time. Whatever obstacle we have to deal with, we will deal with at that time. We will get through it!

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The concept that I was looking for was "neuroplasticity." If you go to YouTube and type in that word or the phrase "brain plasticity," you'll find some amazing stories.

Best wishes, everyone! Have a great weekend!

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Interesting topic! I have studied about the brain and trauma for my professional development for about 13 years prior to the birth of our daughter at 26 weeks. I felt well aware of the risks she faced (and faces). I have read excellent qualitative research outlining techniques and subsequent benefits to creating new neural pathways which perhaps help the child to adapt. I also implemented these techniques and observed so many startling benefits in years of clinical practice, but did not do my own quantitative research. It's probably not a stretch to understand that for my daughter to be subjected to extreme medical care and lay in a isolette for 100 days as opposed to being surrounded by the peace and comfort of the womb does create a difference in brain development which may extend into her life for who knows how long. The bottom line.......There is tremendous evidence out there that art, dance, music, creative play, all create healthy, new dendrites in the brain and actually create new neural pathways, thus providing "healing" to the brain at an exponential rate. Yes, Neuroplasticity is what gives me the greatest hope for my daughter and her future! Also, great outcome studies for attachment parenting and preemies. And, as her mother, I believe my daughter posses something in her that makes her stronger perhaps because of what she endured early in life. I see it as my job to make sure she sees that strength in herself and knows how to use it in ways that support her.

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Hi Rainysmom,
I had not heard that about attachment parenting, it's good to know. I have fallen into that parenting style because Zoe is such a high needs baby, being close to me at all times really calms her down. Neuroplasticity is a very interesting subject- I'm reading a book called What's Going On In There by Lise Eliot about brain development in 0-5 yr olds that talks some about this subject.

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In regards to the US infant mortality rates as compared to other developed countries, the statistics are not as accurate as they seem at face value. In the US, if any breath is taken after birth, that child is counted as a live birth. Many European countries define live births differently than the US, which skews infant mortality rates and makes the US mortality rates looks terrible in comparison.

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