Sunday, July 29, 2012

We Are Finally Being Heard!

This is a poster that accompanied an article and presentation about our medically fragile kids.  FINALLY, the medical world seems to be starting to listen.  If you're hunting for our picture, go to the top left corner of the banner.  There's this darling red-haired little boy (whom I get to meet this week!) and then diagonally, up and to the left of his picture, is the one of Aaron's 1st birthday party that's also pictured here.  (Mary is missing because she was back east at the time.)

It seems that this study and article, which interviews 332 parents of children with Trisomy 18 and Trisomy 13 has set the medical world on it's ear, or at least got it listening, hopefully.  I was privileged to be part of this study.  

As recently as two years ago, both diagnosis (Trisomy 18 & 13) were on a list that the American Heart Association labeled as being "not recommended" to resuscitate at birth.  In fact, palliative, or comfort care only, was the recommendation for these children.  Many of my friends have been told to just "let them go" and get on with having a healthy child.  This is heart breaking.  It's as if you can replace one child with another.  Not true.  Each is unique and special.

 The study was published in the Journal of the American Academy of Pediatrics and the abstract is found here.  However, without a subscription, you can't see the whole article.

A Billboard helping spread awareness.
Much more telling than the abstract, is a blog post from a neonatologist.  (Link here.)  He is also a researcher at Sainte Justine University Health Center in MontrĂ©al.  He calls the article "disturbing" because it challenges assumptions that the medical profession has held for a long time.  He states that:  "I conclude; we need to rethink how we present diagnoses of serious conditions to parents." and also, "Above all recognize that these babies are human beings who will be loved, who will be cared for, who will leave a positive mark on their families, and who deserve respect."

Another one.  It says, "Doctors said I wouldn't live to see 1.  Now I'm 11!!

And that, my friends, is what we're looking for.  Help us love our babies for who they are.  Don't dismiss them out of hand because they're not going to be rocket scientists or brain surgeons.  Each life has value.  Each soul has worth. 

 Since the article was published, many different news agencies have picked up on it.  This is the article from the Deseret News here in Utah.  Parenting Severely Disabled Kids Can be a Great Source of Happiness.  All I can say is that Aaron sure rocks that extra chromosome.

Remember the worth of souls is great in the sight of God.


  1. Perfect post about the article Rebekah!! Thanks so much. You are a great advocate.

  2. Thank you Rebekah for sharing our billboards, and above all, your amazing efforts to continue to advocate for Aaron and all of trisomy13/18 children!!

    Jill :)

  3. I was touched by the billboard proclaiming genetic discrimination. When I was pregnant with my youngest son, I had many problems & was told he had a high probability of being born with Down's Syndrome. We were sent to genetic counseling & encouraged to consider abortion. Since that's incompatible with our religious beliefs, it was not an option for us, but we were pressured. He was born without a genetic defect & I've often reflected that he might not have had the opportunity for life had he come to other parents. We don't know the plan & all children deserve the right to life.