During Charlie’s first year, there were (and still are) many unanswered questions about her future. Will she be disabled? Will she have chronic health concerns? Will she have long term special needs? In order for me to acclimate to my new reality, I needed information. I found it strange that there have been very few people willing to discuss possibilities other than a full recovery.
The lack of discussion started with the NICU consult. When Charlie’s early birth was imminent, a neonatalogist stopped by my hospital room. He handed a sheet of paper to me with Charlie’s odds of survival based on gestational age and weight. Under his breath, he alluded to the possibility of long term disability. He did not say anything more about it.
After Charlie’s birth, I was repeatedly told how she was going to be “fine”. Additionally, many of the preemie books are filled with stories of babies who are born prematurely without long term consequences. None of which, helped me understand and accept our new world. For about the first month and a half, I struggled to feel like things were going to be OK even if she survived.
Fortunately, I had the privilege of meeting and talking with a NICU mom of a baby with a trisomy. We talked about our babies and our babies’ “what ifs”. The discussions facilitated my understanding that things could be OK. She was among a small minority of people willing to discuss complex outcomes.
Following one such discussion with that mom, I spoke with one of Charlie’s special NICU nurses. I explained how I found talking to the other mom to be beneficial. The nurse answered with a story about a gravely ill baby with very limited function. Admittedly, I do not know the point of the story. I partially listened but was distracted with my own thoughts. As I followed the story, I found myself thinking of all the possible ways the anecdotal baby could interact with the world despite its limitations.
I do not remember how the nurse’s tale ended. I do know that when she finished, I felt better. I realized that no matter what the outcome was for Charlie… she could still have an amazing life. It was then that I decided I would focus on her capabilities.
When Charlie was discharged, no one ever discussed the possibility of further issues. I suppose she was expected to be one of those preemies that catch up quickly and easily. I let myself believe that we were going to have the “normal” baby experience. However, that is not how things worked out. Charlie, (as I had found out later) like many micro preemies, has on going struggles.
Ever since Charlie’s birth, I have wondered several questions. Why is discussion limited to a false dilemma between death and full recovery? Why do I have to consult research literature and other micropreemie parents to find out that Charlie’s outcome is par for the course? Why is there a lack of discussion about outcomes, delays, disabilities, and challenges? Are others aware that silence is more frightening than discussing scenarios and options?
There are advantages to the existence of a dialogue. For example, useful ideas can be spread, the sense of isolation among parents can be reduced, better supports established, parents can be empowered, possibilities explored, and others can gain understanding. It is time that all of the babies are considered. Let’s talk about it.