Comments on: What it’s like to receive a diagnosis of Down syndrome

By: Kathleen

Kathleen — Mon, 28 Feb 2011 12:21:29 +0000

It’s always good to see when things are handled well for people. Our Ob came in to tell us the news, which was a very good call b/c he had a relationship with us, and it was particularly meaningful because I know how busy he is and how many people waited over at his office while he came back to the hospital to minister to us. It was only in the aftermath that we got so angry with some of the medical personnel we encountered, both at the birth hospital and back at home.

By: Claire Thompson

Claire Thompson — Mon, 28 Feb 2011 02:31:26 +0000

I love #6 and #7. I was so sad to hear about your experience in the hospital. Our recent experience was SO much different and I’d like to share it since it was so different.
My husband wondered if Luke had DS as soon as he was born but did not say anything to me right away (he is a Family Doctor). He waited until the newborn exam the next morning when the pediatrician started by telling us how healthy Luke was and then mentioned very gently that he wanted to have the pediatric geneticist come in and do a second exam because he was seeing a few characteristics that were typical in DS. She came in and right away told us that while we would have the blood work done that she was certain he had DS. It was a relief to not have to wait to find out. The next doctor we saw was the OB who delivered Luke. She congratulated us and told us that her 17 year old son’s best friend since Kindergarten was a young man with DS and gave us his mother’s home phone number and told us how amazing he is. We felt completely taken care of and reassured that we could raise Luke and that he would thrive in our home. It’s not easy to find out that your baby isn’t quite who you thought they were going to be – but it’s wonderful to realize that they are exactly who God intended them to be.

By: Kathleen

Kathleen — Sat, 26 Feb 2011 03:08:47 +0000

I was particularly saddened by it b/c it’s a Catholic hospital. :/ I guess they just don’t see the kids coming through.

By: Michelle

Michelle — Sat, 26 Feb 2011 02:32:49 +0000

Thank you for sharing this…I am always interested in it. If I ever have a child with DS, I would most likely find out at birth, too, since I deny the testing. That’s crazy about the hospital…

By: That Married Couple

That Married Couple — Fri, 25 Feb 2011 20:10:51 +0000

Very interesting. Thanks for sharing. And boo for assuming doctors!

By: Joy

Joy — Fri, 25 Feb 2011 17:16:15 +0000

Great list: I have really learned the wisdom of #7 from the nurse perspective ~ I start with the usual instructions about caring for a newborn and augment where needed. So glad you found good support from others in the same trench; that seems to be the most useful in those early days.

By: Tami Boesiger

Tami Boesiger — Fri, 25 Feb 2011 13:06:34 +0000

I especially like your advice in #7. We would all do well to follow it for any number of unexpected surprises in our lives. Thanks for the reminder not to get ahead of myself.

By: RAnn

RAnn — Fri, 25 Feb 2011 12:52:38 +0000

My son is on the autism spectrum, but wasn’t diagnosed until he was eight. While we knew early on that “something” wasn’t right,we just attacked the problems as they appeared. Even so, hearing the word wasn’t fun. I agree with you about just taking it one day at a time and treating them as the individuals they are rather than as a syndrome.