It's been three years since I got the call. The words were, "Hello, Jennie, this is Dr. H. I have the results from your amniocentisis and I have bad news for you. Your baby has Down syndrome." I started this blog the next day.
There's been some research done that shows that a woman remembers receiving the diagnosis the same way someone remembers where they were on 9/11. I'll share a link to a video (though it's not working for me right now).
http://www.ndsccenter.org/physiciansguide/ (click on "For a greater understanding of the importance of your role, please click here")
She remembers the wording almost verbatim 20 years later.
So to the doctors out there... Please choose your words carefully.
At the time we received Micah's diagnosis, we already knew he had duodenal atresia (that was the main reason we chose to get an amnio... we didn't want to be worrying about Down syndrome when he was in surgery after he was born). We didn't know about his heart defect (that was found a few weeks later). When we found out about the heart defect, it was like another dagger. We had dinner in Milwaukee that night with my bro and his then girlfriend (who is, thankfully, now our sister-in-law!) after our "tour" of Children's Hospital. I don't think I had many tear-less moments that night.
All of Micah's medical stuff has been much more burdensome than the fact that he has Down syndrome. I look back on three years ago and I wish I hadn't spent so much time being sad. Micah's pesky and perky extra chromosome has brought many blessings to our lives.
Pumpkin Patch 2018
6 years ago
3 comments:
love this post...you're so right about the wasted time over their Ds diagnosis! hindsight is. of course, 20/20....if only we could convince others of that when they receive the diagnosis....hugs!
I was talking to one of Lily's therapists today. She was in the waiting room at her doctor's office when a woman came out in tears. She said that she just knew that the woman had gotten a diagnosis of Ds. She talked in general terms about it with the doctor (since he can't talk about another patient). She asked him if he had any resources about talking to a patient and he said he didn't. I told her about a couple of things including Gifts and offered to compile a blog list along with other resources. It's so frustrating the way things are presented...
Wow, how time changes perspectives; I remember the gut wrenching feeling during that time. You are an inspiration!
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