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.
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