“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.
Anne Ross
September 26, 2011 at 3:01 pmMy name is Anne Ross and my son with DS is Joshua. He is 6 years old and the light of my life.. as a matter of fact, I love him so much I want to ADOPT another child with DS. They are pure love.. he has his moods like any other child, he is not always happy as the stereotype goes.. He is a unique individual just like any other person is. He is a gift and a blessing and has opened my eyes to what is REALLY important in life! I would not trade him for the world!
Valerie Strohl
September 26, 2011 at 4:24 pmAnne – Thank you for sharing. May I forward this to Dr. Skotko?
Amy Dietrich Hernandez
September 26, 2011 at 6:13 pmMy son, Charles is 12. We found out about his heart defect first and that he had Down Syndrome afterwards through amnio. I’m so glad that I found out the “bad” stuff before he was born so that we could focus on the good stuff afterwards!
Did he need extra medical care? Yes, he did and still does see more specialists than my other two boys.
Does it really matter? Well, it was hard to watch him go through two open heart surgeries; but, I ask you: Do you know what kind of medical issues your “typical” child will develop? Can anyone predict what kind of needs your “typical” child may develop? No. No one can. We learned about Charles’ issues before he was even born and it gave us time to process the information and move on to how awesome he was once we met him!
I have two other boys. I thought Charles would be my challenge, but, let me tell you that is not the case! My oldest and youngest are both on the Autism spectrum and their social issues have been much harder to deal with than Charles’ medical ones.
Charles is outgoing, fun, funny and the life of the party. He participates in sports, has many, many friends and is loved so much.
Down Syndrome is not the end of the world! It’s a different view of the world!
Valerie Strohl
September 26, 2011 at 7:25 pmThanks for your wonderful testimony. Would you mind if I passed it on to Dr. Skotko? Let me know. Thanks.
Amy Dietrich Hernandez
September 27, 2011 at 10:01 amValerie: Please pass it on! This little exercise has inspired me to write an editorial today! Thank you!
Valerie Strohl
September 27, 2011 at 11:08 amWill do! You go girl!
Emily Totaro
September 29, 2011 at 3:03 pmI am Charles’ aunt! Let me tell you I was nervous when I first met him, afraid he would be more fragile as an infant then other babies. Yes as said above he had a heart defect, but other than that he was a cute smiling sweet baby.
When he was a toddler I babysat him for a few hours one day. I sat and ate my McDonalds fries while he ate the food my sister left for him. The whole time I was eating he kept saying fries and trying to grab them from me, just like any other toddler would do!
When he was six he met my first son, and held him just as all his cousins did.
Through the years I have watched him grow, even though we live almost 800 miles apart. I may not get to see him all the time, but when I do it’s not as if he doesn’t know us! (I only say this because people who don’t know anyone with DS often think of them as not smart.) He’s a smart, loving, wild, fun,personable boy!
On vacation this summer he told me he hated me. 5 minutes later he said he was sorry and gave me the biggest hug! Sounds like a 12 year old to me! My 2 boys (4 & 5) had a blast with him! They love his brothers too but they talk about Charles all the time and how much fun he is!
There is something about him that just makes you want to smile and laugh….most of the time. Of course he gets in trouble just like every other kid though too! He also doesn’t take crap from anyone. I’ve seen first hand someone try to make fun of him and he went right back at them and let them know it wasn’t ok. I’ve seen him hang around boys he sees every summer who don’t bat an eye at their differences, cause he’s just Charles who loves to jump in the lake, swim, tell jokes and have fun!
So to anyone who is considering aborting their unborn child because of DS, I would tell them that they should reconsider. Having him in my life and my boys lives make us better people I honestly believe. My boys don’t look at people with disabilities and gawk. They smile or say hi. They do this with all people. Charles is awesome, and he knows it too…
Valerie Strohl
September 29, 2011 at 3:17 pmThank you for sharing Emily. Your words are beautiful and so so true! THANK YOU! – Do you mind if I forward to Dr. Skotko?
Emily Totaro
September 29, 2011 at 11:42 pmOf course! The reason I wrote it was to help others to not be afraid of DS but to embrace it!
Valerie Strohl
September 30, 2011 at 6:39 amGreat – will do! Have a wonderful weekend!