I was at work when I received the call. The most gut wrenching call to get while you're pregnant. It didn't come from you, it also didn't come from the specialist who performed the NIPTS test, but instead it came from your nurse, who decided that this was the best way to deliver such news to a new mom.
"I am calling to let you know that your MaterniT21 test came back positive for Trisomy 21" she said, in a stone cold, matter of fact way. I had no idea what that meant. With my heart pounding and tears streaming down my face I tried to escape past my puzzled coworkers to the outside in order to find the privacy that this call deserved. I couldn't breathe, but somehow I asked " What is trisomy 21? What does this mean for my baby?" Again, your nurse stuck to her cold nature as she explained that our baby will have Down Syndrome. She then suggested that we come in as soon as possible to discuss our options. When I asked what she meant I was told that we could either choose to put the baby up for adoption or abort him since I was still early enough in my pregnancy to do so.
Sobbing I called my Husband and told him to leave work so that we could come see you. I wanted something more than a phone call.
Unfortunately your first words to us was "I am sorry". I understand that it was probably your job to inform us of all our options, but I would have loved a little more time spend on the positives of choosing his life.
Knowing what I know now, I wanted you to tell me that my son will be amazing, that he will have a full, happy life and that he would be loved by everyone that meet him. I wanted you to tell me that although there are a lot of medical complications associated with Down Syndrome, it didn't mean that my son would have all or any of them. I wanted you to tell me that there are amazing support groups that will be able to give us an inside look at what the diagnosis really meant.
We chose Ivan's life and in our minds there was never any doubt. He is our son and we love him more than you can ever imagine. Please realize that your words can influence people's first impressions about what Down Syndrome really is... while they are in a very fragile state of mind.
Dear Doctor, the way you deliver the news will stay in a family's mind forever and might even make them miss out on the biggest gift a person could ever receive.
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.