Friday, June 5, 2009

Delivering the Diagnosis

When the doctors were explaining Down syndrome to us in the days after Brennan's birth, every bit of information they gave us was negative. Really, every bit of it. No wonder I was feeling such doom and gloom. Then I met and read stories from parents of children with Down syndrome and the stories from them were overwhelmingly positive. I try to imagine how differently and more optimistic I would have felt from the beginning if I had been given both "medical" and "real world" information in those first days. If a doctor and a parent could deliver a diagnosis - what a difference that would make!

5 comments:

Adrienne said...

I will tell you it made a huge difference for me. I had to find my own positive stories before we had Bennett but it made his birth so much more joyous. Sure I am sad at times but I feel like it helped me to have some positive stories and people in real life I met before hand with his diagnosis.

Monica Crumley said...

That's what i needed as well. I haven't opened a medical book or the huge binder I got from our DS group in about a year. What sticks with me most is the personal stories and photos of happy families.

BTW, have you seen Brennan's badge on the new blog? www.dsbloggers.blogspot.com

Shauna said...

Oh, this makes me so angry. I wonder what would happen if all of the Ds moms asked the women in their lives - grandmas, sisters, girlfriends, neighbors - to purchase a copy of "Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives," and asked them to give it to their OB/GYN at their next check-up.

They could also use this opportunity to let their doctor know how they feel about the child in their life with Ds and that they'd hope that the doctor might give a parent facing a diagnosis of Ds a more balanced perspective. Maybe there could be an attached handout with some of the facts that you've highlighted on your blog?

Just an idea. And I love the badge for you and Brennan!

I love you,
Shauna

Sharon said...

That's a great idea, Shauna - I do feel the need to make a change in the way information is provided. Thanks for the suggestion - I think it's a great one.

AngieW said...

The thing that I remember most was how many times I was "reminded" that I could terminate the pregnacy by so many differnt doctors and nurses. And this was at a Catholic hospital. I look at my beautiful boy every day and wonder how anyone would every consider suggesting that.