Two years after you delivered the news that our son would be born with Down syndrome, I still struggle when reliving that surreal twenty 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 while he vomited in our bathroom.
We didn’t know much about Down syndrome. Turns out, neither did you.
Once I sat on your table covered in crinkle paper, you told us that there was a 99.9 per cent 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 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 recognised guidelines in the US 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 in an unbiased manner.
Dear Doctor, unfortunately you are not alone. A 2013 study found for every one parent who had a positive diagnosis experience, there were two and 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.