The NICU doctor is not God.
"He will have 70 shunt revisions in his lifetime"
"She will never eat by mouth"
"He will never walk"
"He will never talk"
"He will be in a wheelchair"
"The gracious thing to do would be pull support"
"He will be paralyzed"
"She will have severe Cerebral Palsy"
"She will be a vegetable"
All of those statements have been uttered over Jack or over a friend's micropreemie, by a doctor. Probably well-meaning and all, but these kinds of statements, in my opinion, have no place in the delicate field of NICU medicine.
Why you ask? Because doctors are not God. They cannot predict the future, nor should they try doing so.
I understand doctors have this tricky job of relaying statistical data to parents of preemies with brain bleeds. And that is really all they have to go off of - statistical data and their own experience. Where some cross the line and where this post is coming from is in the comments like "she will never eat by mouth." How do they even know this? How can they predict it? Because this precious baby suffered a brain bleed? Do they have some sort of crystal ball? How do you suppose this makes a NICU parent feel? With the weight of the world on their shoulders, often deciding between pulling life support or not? Blanket statements have no place inside NICU walls.
Doctors cannot predict your child's future. They cannot predict how the brain will heal after a bleed. They cannot predict exact areas that will be affected (beyond MRI results). And they certainly can't tell you what the "quality of life" will be like for your child.
And boy, do I hate that term.
We knew Jack's likelihood of survival, based off of being a white male, born at 23 weeks, with a grade 3/4 bilateral brain bleed. We knew it was around five percent. We also knew that Jack would be getting a shunt. One day a doctor cornered us in a small hallway and really, for lack of a better term, "let us have it". He told us all about what he thought Jack's "quality of life" would be if we continued life support. He told us Jack would have 70 shunt revision surgeries in his lifetime. That he would be an invalid, probably in a long term care facility.
We left that discussion utterly and completely devastated. We got the message loud and clear. A guilt trip, really. The doctor was basically saying that the best thing to do would be to take Jack off life support and let him die peacefully. I remember the day so very clearly. We were getting so many mixed messages and trying to navigate the murky waters of micropreemie medical care. Jon and I just held each other and cried for hours. It was one of the worst days of my life.
Were we being horrible parents for keeping Jack alive?
Thankfully, this doctor was not Jack's first, go-to Neonatologist. We later met with our #1 and came up with an action plan. We would continue life support until she knew, beyond a shadow of a doubt, that Jack would not survive medical treatment (organ failure, etc).We didn't want Jack to go through painful procedures and surgeries if it was useless and only prolonging Jack's agony. But, we wanted to try everything in the book, if, if there was a chance. No matter how small. And she respected our choice. She told us the statistics and continued to give us all options, all sides. Life or death in the NICU is a very grey area. She gave us any information that we requested. We knew that Jack had a very high chance of cerebral palsy (if he even survived). But we also read studies (given to us by this Neonatologist) that suggested that not all hope was lost.
Thank God for this woman. Jack would not be here today if it wasn't for her optimism and willingness to treat our 23 week, "wimpy white boy" of a baby.
Being a NICU doctor is such a high and wonderful calling. There are many who excel at this job. But when you start playing Doomsday Doctor, somehow thinking you are all-knowing, God's own voice on earth, the absolute truth in predicting a micropreemie's outcome, well, that is where you cross the line from being a great doctor, to playing God.
This was originally posted on August 12, 2012 and is being republished today as part of our Flashback Friday series.