Dear Doctor, I Wish I Had Been Able to Enjoy My Pregnancies
Today marks my son's Third birthday, I am so glad I have him. He's here partly because of you. You took a chance on a medication and helped me get pregnant with my son. There is one thing though that I wish I could say—I wish I had gotten the chance to enjoy being pregnant with him.
You see at fifteen weeks pregnant you gave me a lab order for what is called the quad screen; I still wasn't sure if I wanted the test or not, but at 17 weeks I went to the lab and had the blood draw. Two days later I got a call at work from your nurse, saying the test results came back positive for Down syndrome.
My world stopped, I was 23, I didn’t think this happened to young people. I knew very little about Down syndrome but I also knew it wasn't as scary or a death sentence as some do. But doctor you thought there was a mix up at the lab because in your words "I was young and had no history.”
You gave me another order for the quad screen and I went on a Thursday to get it done. I also went that weekend to have an elective ultrasound to find out if we were having a boy or a girl; we found out we were having a Boy!
I called your office on Tuesday to see if you had heard from the lab yet; you had and this one came back negative! You didn't offer further testing or a more in depth ultrasound.
I wouldn't find out which test was wrong until my son was born. For 18 weeks I was wondered.
We had to have a C-section. We thought that my husband, who was deployed at the time, would get to be there. Our son had other plans and came two weeks early.
My son was born at 2:34 in the morning on October 27th. He wasn't very vocal but he did cry and I got to see him about 15 minutes after he was born. As my doctor was closing me up they had the NICU nurse practitioner come talk to me; first they told my mom what they suspected and asked if she wanted to tell me (she said no).
The NP asked if I had any testing done and I said yes I did the quad screen twice. I said, " Which one was correct, the false or the negative one?" All I could think was why didn't any one offer more testing. Thankfully my son did not have any health complications at all, but I still don't understand why you didn't offer any testing and I wish you had so I could have known for certain and enjoyed my pregnancies.
You see because of you during my first pregnancy I had a feeling of waiting for the shoe to drop and with my second pregnancy I was waiting for the other shoe! I wanted facts about what was happening and I didn't get that during my first pregnancy because I was young and healthy and didn't have a history.
Dear Doctor, the majority of babies born with Down syndrome have mothers who are actually under the age of 35. Please educate yourself and follow the nationally recognized guidelines the next time you have a patient with a screening that comes back positive for Ds.
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.