Sunday, July 14, 2013


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 and read responses to her writing prompt "choice."


  1. Love this! My 26 week twins both have CP and because they were a bit older than yours, resuscitating wasn't a choice, it was a given. However, I'm so glad that "choice" was made for me because they are amazing!

    1. Thanks for sharing! I love your response to the "choice" prompt as well. It's the daily choices that help carry us through life!

  2. Oh wow Laura, this is powerful! You need to find a place to submit this piece.

    1. Ellen, Thanks for the inspiration! I've been trying to figure out what to do next.

  3. I love this piece too. Just to bring hope to others and I love talking to others about our experience as well...We have a 24 our hospital the parents have a "choice" to make even at 24 weeks...I remember the NICU 24 weeks there was a 50% chance at survival and a 50-60% chance of disability...we asked them to do what they could. Complications that lead to an emergency delivery stacked the odds even higher against our little we rushed to the operating room we were given a 10% chance at survival and 90% chance of disability...we still let it be known that our "choice" was for them to resuscitate and we would leave it in God's hands. She was 1 lb 1 oz. She is currently 17.5 lbs at 21.5 months (born Dec 2012). She has areas where she is advanced and areas of slight delay but everyday she catches up more and more. Its so cool when a development specialist says she needs to be working on this and later that day or week she is doing it. She had Grade 2 and 3 brain bleeds which resolved in the hospital with no visable movement of the brain matter...She was able to come home with no tubes, oxygen, or monitors...At her 1 year appt we checked up on all the outstanding issues she left the NICU with and everything had resolved...Her lasting issue is her eyes...She had ROP Stage 3+...underwent laser eye surgery in the NICU...She has underwent eye muscle surgery since being home and we will find out Friday if she will have another eye muscle surgery on Oct 1. She wears glasses but is the happiest little girl in the world...I am so glad we made the "choice" that we did.

    1. Beautiful! I love this story!!! Thanks so much for sharing.


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