Dear Doctor,
It’s been two years since you shared the news that our son would be born with Down syndrome, and I still find it challenging to revisit those surreal moments spent in your sterile office. For a time, I even pushed the memory aside, only to have my mother remind me of your words when they began to resurface.
My husband and I instinctively knew that the request to return to your office meant the results of our noninvasive prenatal testing were not what we had hoped. Upon receiving the call, I felt as if my pregnant body had crumpled to the floor. After regaining my composure, I assisted my husband, who was in uniform, as he struggled to cope with the news.
We were largely unaware of what Down syndrome entailed, and it seemed you were as well. Sitting on your crinkly paper-covered table, you informed us of a 99.9% chance that our child had Down syndrome and presented us with two choices: terminate the pregnancy or continue it—never offering any further testing options.
When I inquired about the implications of this diagnosis for our child’s future, your response was disheartening: “At worst, he will never be able to feed himself. At best, he will mop the floors of a fast-food restaurant.” This was the entirety of the conversation, filled solely with arbitrary limitations you had assigned.
You assured me that if we chose to proceed with the pregnancy, we had an option: “You don’t have to be a hero. We can keep the baby comfortable here, but you don’t have to make drastic decisions like open-heart surgery.” Your implication was clear: if we opted against termination, letting our son die was the next best course of action. You decided his life was not worth living, a choice that should never have been yours to make.
Dear Doctor, you let me down. You neglected to adhere to established national guidelines for delivering a Down syndrome diagnosis, which call for a balanced presentation of both positive and negative aspects of living with the condition—done in an unbiased manner.
Regrettably, your experience is not unique. A study from 2013 revealed that for every one parent who had a positive experience receiving a Down syndrome diagnosis, there were two and a half who had a negative one. Shockingly, almost 25% of families reported that a medical professional pressured them toward termination.
While I don’t expect you to possess the depth of knowledge that a specialist might have regarding Down syndrome, I urge you to familiarize yourself with some fundamental facts about the most prevalent chromosomal condition in the world. Inform your patients about potential medical complications, but also discuss available therapies. Explain the likelihood of developmental delays, while also highlighting how many children with Down syndrome are successfully integrated into general education settings and have access to numerous college programs.
Dear Doctor, no one has the ability to predict another person’s future or define their worth. An extra chromosome may indeed present challenges, but it also opens doors to remarkable possibilities.
As an OB-GYN with years of experience, I know I am not the first patient to receive this diagnosis from you, nor will I be the last. It is imperative that you improve your approach. Lives depend on it—not just the unborn, but also the future of patients who will be deeply affected 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. It aims to raise awareness about the guidelines for delivering a Down syndrome diagnosis with current information and without bias. If you want to share your experience with your doctor regarding the delivery of a diagnosis, consider participating in DSDN’s Physician Feedback Program. For more information on family planning and home insemination, you can check out resources like Mount Sinai for pregnancy, or learn more about artificial insemination at Make a Mom. If you are exploring family building for cisgender gay men, this resource is very informative.
In summary, it is crucial for healthcare professionals to approach the delivery of sensitive diagnoses with compassion and comprehensive information, enabling families to make informed decisions.