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What Doctors Should Be Telling Parents About Down Syndrome

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When my daughter Alice was born, all of the doctors in the hospital were incredibly negative with us.  They told us that she had Down syndrome in a very depressing way.  They did not congratulate us.  They told us they were sorry. They acted like it was the end of the world for us.  I would have given anything in that moment for one sliver of hope — but the doctors didn’t give it.

As I’ve met and talked to so many other moms of kids with Down syndrome, I’ve discovered 99 percent of them had the same experience. This is wrong, and it needs to stop.

In addition to the doctors being extremely negative about your future once you have a child with Down syndrome, there is also a ton of misinformation out there. A lot of books are outdated and wrong. Information given via pamphlets in the doctors’ offices is wrong. I can attest to that. In general, the messages doctors give patients about Down syndrome are wrong.

While the post below is not exactly what the doctors told me when Alice arrived, it’s a compilation of ideas they put in my head, ideas they have put in the heads of other DS moms I’ve now met, as well as (inaccurate) ideas you’ll find in books and articles and Google searches about Down syndrome.

The delivery and dialogue needs to change.  I’m working on it.

Doctors say:

“I am so sorry to tell you this, but unfortunately I suspect that your child has Down syndrome. I know this is supposed to be a happy day and now it is not. Because she has Down syndrome, your child will do some things you envisioned for her, but not others. The things she does will take a long time to learn. She will be very delayed. Your older daughter will miss out on having a typical sibling relationship. Your marriage will suffer because of this added stress.

A lot of your time will be spent taking your daughter with Down syndrome to appointments and therapies.  She will likely live with you forever.  She will be dependent on you for almost everything.  She will look different than you and the rest of your family because of all the features associated with Down syndrome. I am so sorry, but you are going to have a life of hardship because of your daughter with Down syndrome.”

Oops, doc. I think you meant to say this:

“Congratulations! I am so excited to tell you that we think your daughter has Down syndrome. I know this comes as a shock to you, but things will be OK. They will be more than OK. They will be awesome. Your daughter will probably do everything you envisioned for her. In some things she might be a little delayed, but it’s not a big deal. She will always get where she wants to go.

Your older daughter is going to learn so much from your new baby with Down syndrome. She will learn compassion, patience and empathy. Your marriage is going to thrive. The divorce rate is actually lower in couples who have a child with Down syndrome. You will see your spouse in a whole new light, and you will fall in love all over again.

You might have some extra appointments or therapies for your new baby, but they probably won’t be as time-consuming as you might fear. And every ounce of ‘extra’ you put into your new baby will make her stronger and keep her on track with her peers. She will probably not live with you forever, but by the time she’s 18, you’ll be so in love with her that you’ll be begging her to stay.

She might have some features of Down syndrome — like these beautiful almond-shaped eyes — but she will look so much like you, your husband and your older daughter too. She is absolutely beautiful.  You will experience love like you have never known before. I am so incredibly excited for you, for you are going to have a life of indescribable joy because of your daughter with Down syndrome.”

Ann's daughters, one has Down syndrome and the other is typically developing.

Originally published: September 19, 2019
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