Dear Doctor,
Two years have passed since the day you delivered the news that our son would be born with Down syndrome, and yet that surreal 20-minute conversation in your sterile office is still fresh in my mind. For a time, I actually tried to forget it—my mother had to gently jog my memory about the details you shared that day for me to confront those painful words again.
When we stepped into your office, we had a sinking feeling that the results from our noninvasive prenatal testing wouldn’t be what we had hoped for. I still remember collapsing in shock after receiving the phone call. After regaining my composure, I had to assist my husband, who was struggling to escape his tight military uniform as he became physically ill in our bathroom.
Our knowledge about Down syndrome was limited. It seems yours was as well.
As I sat on that crinkly paper-covered exam table, you informed us there was a 99.9% chance our son had Down syndrome. You presented us with two options: terminate the pregnancy or continue, without offering any further testing. When I asked what life would look like for our child, you bluntly replied, “At worst, he’ll never be able to feed himself. At best, he’ll mop the floors of a fast-food restaurant someday.” That was the extent of your discussion regarding his diagnosis—just arbitrary limitations that you seemed to impose.
And then, in an attempt to comfort me, you suggested, “You don’t have to be a hero. We can keep the baby comfortable here, but you wouldn’t have to do anything drastic like open-heart surgery.” Your tone implied that if I chose to continue the pregnancy, the humane thing would be to let our son die. You made a choice about his worth that wasn’t yours to make.
Dear Doctor, you failed us. You disregarded established guidelines for delivering a Down syndrome diagnosis, which advocate for presenting both the positive and negative aspects of the condition in a balanced manner.
You are not alone in this; a 2013 study found that for every parent who had a positive experience with a diagnosis, there were two and a half who had negative encounters. Alarmingly, nearly one in four families received pressure from a medical professional to terminate.
While I don’t expect you to be as knowledgeable as a specialist, I urge you to familiarize yourself with the basics of the most common chromosomal condition. Explain the potential medical issues, but also highlight the therapies available today. Discuss the possible developmental delays, but also share that many children with Down syndrome thrive in inclusive classrooms, with numerous college programs now available.
No one can foresee another person’s future or define their value. An extra chromosome may present challenges, but it also brings extraordinary opportunities.
As a seasoned OB-GYN, I know I’m not your first patient to receive this diagnosis, nor will I be the last. You must strive to do better. Lives depend on it—not just the unborn but also the lives of your patients who will be forever 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 importance of adhering to established guidelines when delivering a Down syndrome diagnosis. You can share your experiences with your healthcare provider by checking out the DSDN’s Physician Feedback Program.
And if you’re interested in exploring more about the journey of home insemination, consider visiting this post or learning about the resources available for couples at Make a Mom. For further support, this resource is invaluable for anyone navigating pregnancy and home insemination.
In summary, your approach lacks the empathy and information that families need during such a critical moment. It’s time for you and others in your position to step up and provide support that reflects the reality of living with Down syndrome.
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