To the Doctors Who Told Me, ‘I’m Sorry, but Your Baby Has Down Syndrome’


An open letter to my OBs:

Three years ago, you all saw me through my pregnancy with my son, Porter. We found out we were high risk for Trisomy 21 and Trisomy 18. Some of you encouraged me to keep my options open and pushed for additional testing. We caved and had the amnio. Around 18 weeks, we got the call: “I’m sorry, but your baby has Down syndrome.”

down syndrome diagnosis the mighty Again, I find myself visiting your offices with increasing frequency. Again, you’re guiding me through pregnancy. And while I’m now 35 and truly “high risk,” I’ve had my MT21 test and screened negative. There’s no talk this time of options, just “everything looks great.”

My baby has been a baby the entire pregnancy and we haven’t once heard the word fetus. This time it’s different — no one is walking on eggshells when they step into my exam room.

And I think I get it. Your experience with Down syndrome is at the start of each family’s journey. The start is a hard place to be. It’s filled with negatives and fears… grieving for that baby the family imagined. The beginning can be a dark time.

I wish I could hit fast forward for you and show you all the good times ahead, because good times there are. My son is the most unexpected gift I’ve ever received. He teaches me daily and he shows me how to love unconditionally.

down syndrome diagnosis the mighty

So today, in honor of my son and all those with three copies of the 21st chromosome, I’m asking you to call on us experienced parents when you have to again deliver this news.

Offer me as a resource at the same time you offer genetic counseling. Let me and other parents like me guide new families through the uncertainty and show them what we’ve learned.

Let us help. Let us help you, too — let us show you what happens after we walk out the hospital doors and begin to build a life together with our new little soul. Let us show you the love.

This post originally appeared on The Many Adventures of Penny & Porter.

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.


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