Dear Healthcare Provider,
Reflecting on the moment when you informed us that our child would be born with Down syndrome, I find it difficult to shake off the emotions from that surreal half-hour spent in your sterile office. It was a moment I tried to block out for some time, only to have memories resurface when my mother recounted the details of that day.
My husband and I had a sinking feeling when we were asked to return to your office. The call we received had already knocked the wind out of me; I had collapsed on the floor, while my husband, in distress, struggled to manage his military uniform as he rushed to the bathroom.
At that time, we were unfamiliar with Down syndrome, and, regrettably, it appeared you were too. Once I sat on the examination table, you delivered the news: a staggering 99.9% chance that our child had Down syndrome. You presented us with two options: terminate the pregnancy or continue it—never once suggesting further tests.
When I inquired about what Down syndrome would mean for our child’s future, you responded with a disheartening statement: “At worst, he will never be able to feed himself. At best, he might one day mop floors at a fast food restaurant.” That was your entire insight into the diagnosis—an arbitrary list of limitations you imposed.
You attempted to ease my worries by suggesting that if I chose to carry the pregnancy to term, we could simply “keep the baby comfortable” without any drastic interventions like open-heart surgery. Your implication was clear: our child’s life was not worth living if I couldn’t bring myself to terminate the pregnancy.
Dear provider, you let me down. By not adhering to the established guidelines for delivering a Down syndrome diagnosis, you neglected to present a balanced view. These guidelines recommend that medical professionals share both the challenges and positives of life with Down syndrome in an unbiased manner.
Unfortunately, you’re not alone in this. Research from 2013 indicates that for every parent who has a positive experience upon receiving such news, there are 2.5 who have a negative one. Alarmingly, nearly one in four families encountered a healthcare provider who pressured them to consider termination.
I don’t expect you to possess the same level of expertise as a specialist in this field, but I urge you to familiarize yourself with the basics of this prevalent chromosomal condition. Educate your patients about potential medical complications, but also inform them about the therapies available today. While there may be developmental delays, emphasize that many children with Down syndrome thrive in inclusive educational settings, and numerous college programs are now accessible to them.
No one has the ability to predict another person’s future or to define their worth. An extra chromosome may present unique challenges, but it also opens the door to extraordinary opportunities.
As a seasoned OB-GYN, I know I am not your first patient to receive a Down syndrome diagnosis, and I certainly won’t be the last. It is imperative that you do better. Lives are at stake—not just the lives of the unborn but also the lives of your patients who will carry the weight of the decisions made during such a critical moment.
In honor of Down Syndrome Awareness Month, I’m sharing this letter as part of the Down Syndrome Diagnosis Network’s #DearDoctor campaign. This initiative aims to raise awareness about the importance of delivering Down syndrome diagnoses in accordance with recognized guidelines, providing current information without bias. You can also contribute by sharing your feedback through the Physician Feedback Program.
In closing, I recommend reading more about the topic of home insemination at Make a Mom. For additional resources related to pregnancy, the Cleveland Clinic’s guide on Intrauterine Insemination is invaluable.
Summary: The author addresses a healthcare provider regarding their experience of receiving a Down syndrome diagnosis for their child, expressing disappointment over the lack of balanced information shared during that crucial moment. They call for improvements in how such diagnoses are delivered, emphasizing the importance of providing both challenges and opportunities associated with Down syndrome. The letter highlights the need for healthcare professionals to educate themselves and follow established guidelines to support families during such difficult conversations.