July 16, 2012
A neonatologist came in. He sat down with Steve
and I and started to explain what having a baby at 23 weeks meant.
He told us that for a 23 week baby, the doctors consult with
the parents to decide what should be done. We had to decide if he was to be resuscitated and put in a NICU or if we let him pass in our arms after birth. But we needed to understand what our choice meant. A week earlier, and he would have been named a still birth. A week later, and the medical profession resuscitates. We were in a gray period. That is why the neonatologist was in my hospital room.
He told us that at his hospital, a little under 50% of these
23 weekers survived.
"Just under 50%?!?" I exclaimed, "That's
FANTASTIC."
He looked a bit taken back. "Everything I've read says
more like 20% on the high end of things," I said.
He also explained that the risk of disability was very high.
Something like 75% would have severe disabilities that they took through life
with them. Around 20% might have glasses
or asthma. Maybe the top 2 to 5 % would outgrow the difficulties of prematurity
by the time they were two or three years old.
"I've worked with adults with severe
disabilities," I said, looking up at Steve for confirmation that I was
going the right way with this, "If he ends up non-verbal and
non-ambulatory, I still want him to have life." Steve nodded.
Life, that's what we wanted. If he would be happy, we would
be okay -- even if his happiness came with severe mental or physical disability
(or both). I pictured my old friend
Lester, a 40 year old non-ambulatory, non-verbal adult. He liked to swim. He loved to watch the shadows dance. He'd
even throw his hands in front of his face and wave them like a mad man to see
the show. He laughed, a lot. He liked animals. He loved any joke that involved
bodily functions. He loved life.
And he taught me how to love life better, too.
I pictured my son, seven years old, reclined in a wheelchair
and watching the leaves dance in front of his eyes on a breezy summer day. If there was a chance at that, even a
less-than-50% chance, I was taking it. For him.
After the doctor left, I chatted with Steve some more. There
was no doubt, in either of our minds, we wanted this child to be resuscitated
after birth.
~~~~~~~~~~~~~
TODAY, July 14, 2013
It looks like Jonathan won't be wheel-chair bound. Cerebral palsy seems not to be his road. And while we can't be absolutely certain, he's meeting all his social and emotional milestones, so even cognitively he is more on track than we expected a year ago.
He still reminds me of Lester, though, and that makes me smile. Like Lester, he loves his hands. He stares at them all the time. Two days ago Jonathan stared out the window. A breeze came by. He started laughing.
The sunlight was shining through the moving leaves, making shadows. He and Lester would get along well.
It is good to be alive.
For more on the complexity and various opinions of resuscitating a 23 weeker, please see my earlier post here.
For other posts about the difficult choices people have made, please visit ellenstumbo.com and read responses to her writing prompt "choice."
