The Micro Preemie world was on fire last week. I’m kind of glad that it happened on my first week back to work and that Kyle was traveling and that we had the 36 hours of the peak of the firestorm without power…I was crazy busy and barely opened my personal computer to see what was going on in the preemie world. In truth, I’m glad.
In case you’ve missed the hubbub, there was an article in the New York Times entitled End of Life, at Birth . The article talks about the ethical decisions around medical intervention of babies born before 28 weeks. I know that many people believe that I’m just a pessimist when I bring up these facts…but the article talks about the 30.000 children, like Owen, born before 28 weeks each year in the US of whom most will go on to have serious social, cognitive or physical problems.
Many preemie bloggers eloquently addressed this article. My opinions are covered by their pieces, so I will share Jessi’s, Tricia’s, Heather’s, (as just a few) instead of add my own. However, as I read this article and a similar one in 2012, I could only think one thing.
I am so thankful we live where we live. I am so thankful to the doctors at Amplatz Children’s Hospital for never trying to play God and for handling the precarious decisions of extraordinary measures…or not…with grace and dignity for the individual families.
Since I was 24 weeks 0 days when I was admitted to the hospital and Owen wasn’t born until 24 weeks 5 days, Owen met what was considered viable at our hospital. Whether or not to intervene was not discussed at Owen’s birth. While I am pretty sure I know what we would have done, I’m glad we were never asked. By not asking, it felt like the doctors were on our team. It told me, that they believed that Owen had every right to be given the chance of a future. No one attempted to play God.
We were lucky. Had Owen been born 6 days earlier, we would have had to have had that conversation. I have friends who had children at Amplatz in the 23rd week. These babies were not assumed viable. The parents had to choose whether to resuscitate and to what means to intervene. I’ve been told by a couple of 23 weeker families that they were given statistics, and offered support from the social workers, but the doctor’s made no recommendations. When these families made decisions, the doctors supported their decisions. No one attempted to play God.
Another place that I often hear other preemie families talk of their doctors trying to play God is in predicting outcomes of the babies. I can’t speak for every family at Amplatz, but I can say, I’ve never heard an Amplatz family say the doctors attempted to predict their child’s future.
In our case, when we were given Owen’s PVL and then Bilateral PVL with cysts diagnosis, we pushed hard to try to understand what it would mean for Owen. The unknowns were terrifying and it didn’t feel like enough information at the time, but in hindsight, I am so, so glad that they only said, “this puts Owen at a significantly increased chance of Cerebral Palsy and global development issues, with the greatest risk to mobility”. We then asked specific to the amount of damage that he had and the answer was only, “We’ve seen kids with similar ultrasounds have significant life long issues and we’ve seen kids with similar ultrasounds only have greater delays. We can only wait and see” They made no bones that PVL would impact Owen’s course (as it has), but they never gave us a prediction of who Owen would or could be. No one attempted to play God.
When families like ours have spent large portions of years, or longer, with doctors, inevitably, we can find things that weren’t done to our liking. However, I wanted to take this opportunity to say “Thank you” to our doctors at University of Minnesota’s Amplatz Children’s Hospital for never attempting to play God.
When I read the NYT article, there were plenty of ways that I could relate and plenty of emotions that were stirred. I will not lie. I’ve watched my child fight for his life and clearly be in pain and I have wondered if he’d ever forgive me for allowing this torture to go on. However, when I look at that article and the Neonatologist questioning if parents are given adequate information and support in deciding how to care for their children, I can say, I really felt our hospital did an excellent job of communicating to us and supporting us.
I feel very lucky to live where we live and I am sorry that not everyone gets the same quality and supportive care.
Thank you, doctors, for giving this, a chance to happen.Ain't No Roller Coaster