Dear Doctor,
Two years after you delivered the news that our son would be born with Down syndrome, I still find myself grappling with those surreal 20 minutes in your stark white office. In fact, I tried to push that memory away for a while. It took my mom reminding me of your exact words for those moments to come flooding back.
When you asked us to return to your office, my husband and I already sensed that the results from our noninvasive prenatal testing were less than hopeful. I can still feel the shock that knocked the wind out of me when I got that phone call. After a moment of utter disbelief, I helped my husband out of his tight military uniform as he rushed to the bathroom to be sick.
We were clueless about Down syndrome; it turns out you were, too.
Sitting on the crinkly paper of your exam table, you informed us there was a 99.9% chance our son had Down syndrome, presenting us with two options: terminate the pregnancy or carry on. You didn’t even suggest further testing.
When I inquired about what Down syndrome would mean for our child’s future, you responded with: “At worst, he will never feed himself. At best, he’ll mop floors at a fast food joint.” That was it. The entirety of your discussion about his diagnosis was riddled with arbitrary limitations you imposed.
But don’t worry, you said. If we chose to continue the pregnancy, you had a plan: “You don’t need to be a hero. We can keep the baby comfortable here, but you don’t have to do anything drastic like heart surgery.” Your tone implied that if I couldn’t go through with the termination, the right decision was to let our son pass away. You deemed his life unworthy, despite it not being your call to make.
Dear doctor, you let me down. You didn’t adhere to the established guidelines on how to deliver a Down syndrome diagnosis, which emphasize presenting both the positive and negative aspects in an unbiased manner.
Unfortunately, you are not alone in this oversight. A 2013 study revealed that for every parent who had a positive experience, there were two and a half who had a negative one. That same study showed that nearly one in four families received pressure from medical professionals to consider termination.
While I don’t expect you to have the depth of knowledge of a specialist, I urge you to familiarize yourself with the basics of the world’s most common chromosomal condition. Discuss not only the possible medical complications but also the therapies available today. Share the potential for developmental delays, but also highlight that many children with Down syndrome are thriving in mainstream classrooms, with numerous college programs now accessible to them.
No one can predict another individual’s future. No one can assign worth to a life. An extra chromosome may bring challenges, but, like all challenges, it also presents opportunities for extraordinary experiences.
As an OB-GYN with years of experience, I realize I was not your first patient to receive such news, and I certainly won’t be the last. You must do better. Lives hang in the balance—not just the lives of unborn children but also the futures of parents forever altered by their decisions.
October is Down Syndrome Awareness Month, and this letter is part of the Down Syndrome Diagnosis Network’s #DearDoctor campaign, which seeks to promote awareness of the guidelines for delivering a Down syndrome diagnosis with accurate information and without bias. You can also share your experiences by participating in DSDN’s Physician Feedback Program.
For more information on pregnancy and home insemination, check out this excellent resource: Facts About Fertility. And for an in-depth look at home insemination kits, visit Cryobaby for the authority on this topic. The importance of understanding and compassionate communication in medical settings cannot be overstated, especially when it comes to sensitive topics like this.
Summary
This letter to a doctor reflects on the inadequate delivery of a Down syndrome diagnosis, highlighting the need for better communication and adherence to established guidelines. The author urges healthcare professionals to present a balanced view of the condition, emphasizing both challenges and opportunities, while also acknowledging the emotional impact on families.