To the Doctor Who Said I Could Let My Baby With Down Syndrome Die

Dear Doctor,

Two years after you delivered the news that our son would be born with Down syndrome, I still struggle when reliving that surreal 20 minutes in your white-walled office.

In fact, I blocked the memory out for a while. My mother had to remind me of the things you said that day for your words to resurface.

My husband and I knew when you told us to come back into your office, that the news from our noninvasive prenatal screening was not what we were hoping to receive. My pregnant body fell to the ground when I got the phone call. After gathering myself, I helped my husband get out of his constricting military uniform as he became ill.

We didn’t know much about Down syndrome. Turns out, neither did you.

Once I sat on your table covered in crinkled paper, you told us that there was a 99.9% chance that our son had Down syndrome and we had one of two options: abort or continue the pregnancy — never offering further testing.

When I asked you what Down syndrome meant for our child’s life, you said this: “At worst he will
never be able to feed himself, at best he will mop the floors of a fast-food restaurant one day.”

That was it. The entire talk about his actual diagnosis was made up of arbitrary limitations, deemed by you.

But you told me not to worry because if I wanted to continue the pregnancy, you had a solution: “You
don’t have to be a hero. You can have the baby here, we can keep the baby comfortable, but you don’t have to do anything drastic like open-heart surgery.” Your tone said the right thing to do, if I couldn’t go through with the termination, was to let our son die. You decided his life was one not worth living, even though it was not your choice to make.

Dear doctor, you failed me. You failed me because you chose not to follow the nationally recognized guidelines that are in place on how to deliver a Down syndrome diagnosis. The guidelines state that medical professionals should present both the negative and positive aspects of a life with Down syndrome, and do so in an unbiased manner.

Unfortunately you are not alone. A 2013 study found for every one parent who had a positive diagnosis experience, there were two and a half parents who had a negative one. That same study found that almost one in four families with a prenatal Down syndrome diagnosis had a medical professional who
was insistent on terminating.

Although I don’t expect you to know as much as a specialist about Down syndrome, I’m asking you to learn some basics about the most common chromosomal condition in the world. Tell your patients the possible medical complications, but also tell them about the therapies available today. Tell them about the possible developmental delays, but also tell them that many children with Down syndrome are now included in the general classroom setting, and hundreds of college programs are now available.

No one can predict another human being’s future. No one can define another person’s worth. An extra chromosome may bring more challenges, but like all challenges, it also holds the potential for extraordinary opportunities.

As an OB-GYN with decades of experience, I know I was not your first patient to receive this diagnosis and I will not be the last. You must do better. Lives are depending on it. Not just the lives of babies with Down syndrome, but also the lives of your patients who will forever be affected by the decision they make.

October is Down Syndrome Awareness Month. This letter is part of the Down Syndrome Diagnosis Network’s #DearDoctor campaign. The purpose of this campaign is to raise awareness that there are nationally recognized guidelines in place on how to deliver a Down syndrome diagnosis — with current information and without bias.

You can let your doctor know how they did delivering the diagnosis by participating in DSDN’s Physician Feedback Program. If you are a parent of a young child with Down syndrome, connect with DSDN for information, connections and support.

We want to hear your story. Become a Mighty contributor here.

Find this story helpful? Share it with someone you care about.

Related to Down Syndrome

three photos of a young boy with autism smiling

Meagan Nash Asks OshKosh B'gosh to Include Her Son, Who Has Down Syndrome, in Its Ads

Update: On October 25, Asher Nash and his family met with OshKosh B’gosh, and Asher will be modeling in the company’s holiday advertising.  Asher Nash is breaking the internet. In less than a week, a photograph of the 15-month-old has racked up over 59,000 likes and 79,000 shares on Facebook. Now, his mom, Meagan Nash, [...]
little girl wearing a shirt that says kindness matters

The Encounter That Reminds Me Why I Love Down Syndrome Awareness Month

I love October! First, we get to celebrate the birth of my daughter KC and the incredible blessing she is to our family. Second, it’s Down Syndrome Awareness Month! You may wonder why that’s a thing and why I’d be excited to spend a whole month spreading awareness, and to answer that I’d like to [...]
sister and brother smiling

My Brother Was the Kid the World Was Against

Down Syndrome Awareness Month exists so we can celebrate the abilities and accomplishments of individuals with Down syndrome. We honor this month so we can show the rest of the world these individuals are more than their disabilities. From a young age, these people are often told their disability will hinder them and they will accomplish very little. [...]
Miles in his toy car.

When People Ask 'Is He Walking Yet?' About My Son With Down Syndrome

If I’ve answered the question once, I’ve answered it a thousand times. “Tell me what Miles is doing now. Can he walk yet?” Miles is 26 months old, and he can’t stand up yet, so no, he isn’t walking yet. When he does start to walk, everyone will know, because I will post pictures, videos [...]