Tuesday, November 17, 2009

Fight for preemies

10 pounds today! It might not sound like much, but that's an eight-fold increase over the past six months. How many people do you know who've managed such a feat? Better yet, Bryce seems happy and healthy, he's right on track (developmentally) for a two-month-old and he hasn't been giving his parents too much grief.

The past few days have been very uneventful, but today is Prematurity Awareness Day, so I wanted to make everyone aware that this preemie is doing great! Also, I'd like to dedicate this "fight for preemies" post to the real fighters who spend their days on the front lines for these kids, and to recognize how lucky we are.

It certainly didn't have to be this way. Six months ago today, Christie and I were sitting in a hospital room, still reeling from a dramatic shift in our reality. When you look at Bryce today, it's hard to believe that on May 17th, we were in the process of having frank discussions with doctors about whether they would provide "intensive care" or "hospice care" for our children.

Although we instantly recoiled at the idea of doing anything less than everything we could for Chloe and Bryce, the doctors were right to broach this very sensitive subject. Even the staunchest believer in the sanctity of life must weigh their desire to fight for their child against the likelihood of a positive outcome, and the odds against the twins were disheartening. Based on studies published in top medical journals which tracked micro-preemie outcomes through the first year, I calculated the following statistics for Bryce and Chloe when they were born:
  • Survival rate: 40%
  • Survival w/o moderate-severe disability: 10%
It's easy to lose hope when you look at those numbers. Given where we started, there was only a 19% chance that we'd leave the NICU with even one healthy baby. It would've been very easy, perhaps even rational, to write Bryce and Chloe off as a lost cause. And yet, when we decided we were "all in", the folks at UMMC (and subsequently at Children's) fully committed their time and energy to helping our babies for no more remuneration than they'd receive if they adopted a specialty where the success rate is much higher than 40%.

Like that of many micro-preemies, Bryce and Chloe's story has taken many tragic turns; Christie and I still struggle with the loss of our little princess. However, it is also a story of hope and courage. Hope, in the form of two naive and overwrought parents who just wanted to give their children a chance at life, and courage, in the form of everyone who fought to make that dream a reality. I challenge anyone to look at that smiling face and tell me it was a poor decision.

So, I wanted to take this opportunity, once again, to thank all the doctors, nurses, scientists, therapists and others who truly fight for preemies every day. These folks take one look at those statistics, and in spite of the heartache they're almost sure to endure, say "to heck with that -- let's save those babies."

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  1. Congratulations! 10 lbs!!! Your stories are the very best. You help so many who struggle as you have. Your Great-uncle Edward Starr is writing a book on the history of the whole family. He asked me to write about ours and asked if anyone has given us Great-grandchildren. Yes, I said, and not only that they have given us our first saint. I told Ed that should be worth far more than anything else that has been recorded. So, rest assured that Chloe Kathleen is listed in his historical records and forever will be remembered. I wish you and yours a blessed Thanksgiving. I will surely be thanking God for Christie and Jason who fought the good fight and succeeded.

  2. Thank you for sharing your story and Bryce's success. Ten pounds DOES sound like a lot to another parent of premature twins (33 weeks gestation, now healthy at age 3.5 years).

    I am so sorry that you lost your Chloe. I can't even begin to imagine what your family has been through.

  3. Dear Jason: The March of Dimes thanks you for participating in Prematurity Awareness Day and for sharing your personal story.

    On behalf of Chloe and all the other babies lost to prematurity, the March of Dimes is fighting every single day. To learn more, go to www.marchofdimes.com/fight.

    Please give Bryce a big hug for us.


  4. HI. BloggersUnite wants to say thank you for sharing your story as part of this event. I am sorry for your loss, but also very happy that your son is doing so well. Best wishes for the future.