As I sat at my daughter’s bedside in the Neonatal Intensive Care Unit (NICU), I found myself wondering about her future. Like so many parents before me and after, I worried. Would she live? Would she walk? Would she talk? Would she be able to go to school? Would she grow up and have a normal life?
Professionals, depending on the child and the gestation, refer to research that shows basic outcomes data from years or even decades prior and give a bit of a glimpse into the future. Sometimes life support is cut off based on these semi-predictions. And should the child live and go home, year after year, parents grapple with these questions especially as one diagnosis after makes itself known. With sample sizes so small, how can we truly grasp the future of these babies? We make our best guess, and that’s the closest we have to a conclusion.
And for the babies that do go home, the entire focus of helping that baby is often in the NICU. Some do go on to get access to Early Intervention therapy but even that support is based upon specific criteria and a percentage of developmental delay assessed in the NICU days. The goal is to minimize disability for those that are the most complex of cases and ultimately save the taxpayer money as well.
The reality is that while those first several years are undoubtedly important, a child born prematurely doesn’t always catch up by the magic age of two years old. We parents know this all too well. Each of us has been lucky enough to bring our child home from the NICU and were told that our babies would “catch up by age two.” We find out, ultimately, that this is just a goal, a hope. Most children do not catch up and that is when other program services come into play. The children also go on into school where suddenly these delays are now labeled disabilities.
Why does this take so long?
And the reality is, that is not the end of it all anyway. Going from school into adulthood and the geriatric years, suddenly there are medical conditions and more that pop up that are now showing cause based in premature birth. Hip fractures, dementia, heart afflictions and more. So what we really have is a life-long, long-term set of challenges that could have been addressed or at least advised upon early on but are not because no one has a true sense of the entire population.
That is where data comes in and provides us with a much more definitive sense of these challenges which can then provide medical science and industry a better idea of ways to help these patients lead healthier lives and hopefully influence policy makers to provide a better safety net for these tiny babies as they grow up and grow older.
You can be a part of this better solution. Join our movement.