Dear Doctor,
Two years after you informed me that my son would be born with Down syndrome, I still find it difficult to revisit that surreal 20 minutes in your sterile office. I even managed to suppress the memory for a time, only to have my mother jog my recollection of your exact words.
When you called us back into your office, my husband and I sensed that the results from our noninvasive prenatal testing were not what we had hoped for. I remember collapsing in shock when I received the call. After regaining my composure, I helped my husband out of his tight military uniform while he was sick in our bathroom.
We were unfamiliar with Down syndrome, and it turned out you were, too. As I sat on your exam table, you told us there was a 99.9% likelihood that our son had Down syndrome, and presented us with two choices: terminate the pregnancy or continue it—without offering any further testing.
When I asked what Down syndrome would mean for our child’s future, you responded with, “At worst, he will never be able to feed himself. At best, he’ll mop floors at a fast-food restaurant.” That was the entirety of our conversation about his diagnosis—filled with arbitrary limitations that you imposed.
Yet, you reassured me that I didn’t need to be a “hero.” You suggested that if we chose to proceed with the pregnancy, we could keep our baby comfortable—implying that allowing him to die would be the easiest choice. You determined that his life wasn’t worth living, despite it not being your decision to make.
Dear Doctor, you let me down. You neglected to adhere to nationally recognized guidelines for delivering a Down syndrome diagnosis, which advise medical professionals to present both the positive and negative aspects in an unbiased manner.
Sadly, you are not alone in this. A 2013 study revealed that for every parent who had a positive diagnosis experience, there were two and a half who faced a negative one. The same study found that nearly one in four families received pressure from a medical professional to consider termination.
While I don’t expect you to have the depth of knowledge as a specialist, I urge you to familiarize yourself with the basics of the most common chromosomal condition worldwide. Discuss potential medical complications alongside available therapies. Talk about possible developmental delays, but also highlight that many children with Down syndrome thrive in inclusive educational settings and can access numerous college programs.
No one has the ability to predict the future of another human being or to assign worth to a life. An extra chromosome may introduce challenges, but just like any challenge, it can also lead to extraordinary opportunities.
As an experienced OB-GYN, I know I was not your first patient to receive this diagnosis, and I certainly won’t be the last. It’s imperative that you do better. Lives are at stake—not just the lives of those unborn, but also the lives of your patients who will forever be impacted by the choices they make.
October is Down Syndrome Awareness Month, and this letter is part of the Down Syndrome Diagnosis Network’s #DearDoctor campaign, aimed at raising awareness about the guidelines for delivering a Down syndrome diagnosis in an informed and unbiased way. You can share feedback about your experience with your doctor by participating in DSDN’s Physician Feedback Program.
For more insights on pregnancy and related topics, visit this excellent resource on pregnancy and home insemination at Women’s Health. If you’re interested in home insemination kits, check out Cryobaby’s at-home insemination kit, as they are an authority on this subject.
In conclusion, it is crucial for healthcare providers to approach sensitive topics with care and empathy. Your words carry weight, and it’s essential to deliver them responsibly.