We've discussed statistics and research on this blog in the past. (If I was better at labeling my posts you'd be able to quickly access said discussions. :) I'll fix that soon.)
When we've had these discussions we end up talking about how the statistics are needed in order to discuss NICU care and decisions. Today I want to talk about how parents, who are raising preemies, need the research and statistics.
In the past I've talked about having a name for all of the conditions that seem to be common in children born premature. Recently Liz tackled this topic on her blog. As you can see from the beginning comments, people cannot handle when a preemie parent is honest about their feelings and struggles.
Statistics are not only important when talking about NICU decisions and care but they are also needed post NICU.
The reality is that there are preemie parents out there who have had their children removed (or threatened to be) due to failure to thrive. To the opposite, other parents have gotten great care from doctors who explain to them that the failure to thrive label is not their fault and occurs in some preemies.
Parents who bring their preemies to many doctors, begging for help for all of the issues that are not explained to the them in the NICU or by their pediatrician, run the risk of looking like a Munchhausen's case. Yes, it happens. To the opposite, there are the doctors who have read the research and statistics and know that there are many issues that preemie face and realize that it is not uncommon to have multiple specialists involved in caring for a preemie.
What about family/friends/neighbors who think you are simply not raising your child the right way and that is why he/she acts so different than peers?
In the January 1st edition of the Journal of the American Academy of Pediatrics an article was posted... Psychiatric Morbidity in Adolescents and Young Adults Born Preterm.
I was immediately saddened yet happy at the same time. Saddened that our kiddos deal with so much yet happy that other parents may not have to go through the disbelief on the part of the medical system, as we did. Paige is not the only preemie who has dealt with mental health issues. We have a good team in place now. They don't judge us, as parents, or say that we simply weren't raising her correctly. They know that prematurity can play a role in the mental health of a child.
Now, I am not saying that prematurity can be blamed for every ailment/condition that a former preemie may acquire. But, when you have a group of conditions that *seem* (that one is for you Clay) to be common, it needs to be looked into. So, to those who are compiling the statistics and writing the research... please keep it coming!
I want to add one more personal comment... I am not, by any means, saying that prematurity needs to define you into your adulthood. It was brought to my attention that some adult preemies who have escaped some of the long term issues feel uneasy about how they are doing. I have never heard this personally. To the opposite, I have gotten emails from adult preemies who have thanked me, and the others on the blog, for discussing the issues. It allowed them to no longer question what was going on in their bodies and minds.
I can assure you, Paige's prematurity does not define her. She does not walk up to strangers and introduce herself as a former preemie. But, the long term issues that her body endures, secondary to prematurity, does dictate how she feels every day.