“Well, the first thing I tell them is they will need a caregiver.”
It was the response to my question about what this young doctor tells her patients if they find out their baby will have Down syndrome.
“What?” My mind was racing, “You tell them what?” I asked.
Not surprising, given the results of a 2004 survey of 532 fellows and junior fellows. When questioned, 45% rated their training regarding prenatal diagnosis as “barely adequate or non-existent,” and only 28% felt “well qualified” in general prenatal genetic counseling. When the survey was repeated four years later, there was little improvement.*
It gives little wonder why our current abortion rate for fetuses diagnosed with Down syndrome hovers around 90%. Sigh… I guess we can get mad, or we can do what this young man is doing – fight science with science.
This week I received a Facebook post from a doctor, Brian Skotko, out of Boston Massachusetts. He is a Harvard graduate and a physician at Children’s Hospital Boston’s Down Syndrome Program. This past July, you may have read about him dressing down GQ Magazine for commenting that Bostonian’s clothing choices were “style down syndrome”. Dr. Skotko has a sister with Downs and he defended her honor. I like him – a lot!
First of all, he affirms the words I penned in a recent post for FC Michigan Blog that siblings of children with disabilities will ultimately be responsible for bringing the movement for the rights of people with disabilities into warp speed. Dr. Skotko is doing this very thing. Plus he has street cred given he graduated form Harvard.
Secondly, he is actively writing research articles for the American Journal of Medical Genetics debunking the many myths of Down syndrome and guiding the medical profession on how to properly give parents prenatal genetic counseling when their baby may have Downs with input coming from the families themselves.
Look at some of Dr. Skotko’s research articles. “Prenatal diagnosis of Down syndrome: How best to deliver the news“, my personal favorite “Having a son or daughter with Down syndrome: Perspectives from mothers and fathers“, and “Self-perceptions from people with Down syndrome”. as well as a few others. If you ask me, he is pretty much hitting the hot topics of the syndrome from every angle.
So if the overwhelming majority of parents love and take pride in their child with Downs (based on Dr. Skotko’s findings), why do we have a current abortion rate of 90% plus? Furthermore, if 95% of siblings have a favorable relationship with their sibling with Down syndrome, why are we so focused on funding medical research to simply make terminating the pregnancy that much easier?
Medical professionals? You are a significant part of this problem, and you need to start telling the entire story to your patients. If you don’t know what this looks like – you need to learn. Now!
Families, what can you do? Please do me a favor and respond to Dr. Skotko’s request to tell your real story about Down syndrome so he may pass on your story to parents who have been given the news their baby may be born with Downs. It is my goal for Dr. Skotko to have so many responses he will be able to give a book of testimonies to these parents.
Thanks for your help and please spread the word!
[Make sure you leave your comments for Dr. Skotko's project by clicking on this link: Dr. Skotko's Project. ]
* Cleary-Goldman J, Morgan MA, Malone FD, Robinson JN, D’Aton ME, schulkin J. 2006. Screening for Down syndrome: Practice patterns and knowledge of obstetricians and gynecologists. Obstet Gynecol 107:11-17.