Dear Doctor,
It has been two years since you delivered the news that our son would be born with Down syndrome, and I still find it difficult to revisit that surreal 20-minute conversation we had in your sterile office. In fact, I had to suppress those memories for a while; it was my mother who had to remind me of your words for them to resurface.
When my husband and I walked into your office, we knew the outcome of our noninvasive prenatal testing wasn’t what we had hoped for. I remember collapsing to the floor after receiving that phone call, and then, in a whirlwind of emotions, I helped my husband shed his tight military uniform as he got sick in our bathroom.
At that point, we didn’t know much about Down syndrome. Unfortunately, it seemed you were just as uninformed. After I settled onto the examination table, you told us with certainty that there was a 99.9% chance our son had Down syndrome. You presented us with two options: terminate the pregnancy or continue it—without offering any further testing or information.
When I inquired about what Down syndrome would mean for our child’s future, you responded with a disheartening remark: “At worst, he will never be able to feed himself. At best, he might mop floors at a fast-food restaurant one day.” That was the extent of your discussion regarding his diagnosis—filled with arbitrary limitations you imposed.
You reassured me that if we chose to continue the pregnancy, we wouldn’t have to be heroes. “You can have the baby here. We can keep him comfortable, but you don’t need to do anything drastic like open-heart surgery.” Your tone suggested that if I couldn’t go through with the termination, the best course was to let our son pass away. You made a judgment about the worth of his life—a choice that should never have been yours.
Dear Doctor, you let me down. You failed to adhere to nationally recognized guidelines for delivering a Down syndrome diagnosis. These guidelines emphasize that medical professionals should provide a balanced view of both the challenges and the positives of living with Down syndrome, in an unbiased way.
Regrettably, your experience is not an isolated case. A 2013 study revealed that for every parent who had a positive diagnosis experience, two and a half reported negative encounters. Alarmingly, nearly one in four families received pressure from medical professionals to terminate the pregnancy following a prenatal Down syndrome diagnosis.
While I don’t expect you to possess the depth of knowledge that a specialist might have, I urge you to familiarize yourself with the fundamental aspects of the most common chromosomal condition worldwide. Inform parents about potential medical complications, yes, but also discuss the therapies available today. Explain possible developmental delays, but also highlight that many children with Down syndrome are now thriving in mainstream classrooms and have access to numerous college programs.
No one can predict another person’s future or define their value. An additional chromosome may introduce challenges, yet it also opens up extraordinary opportunities.
As an OB-GYN with decades of experience, I know I wasn’t your first patient to receive such a diagnosis, and I certainly won’t be the last. You must strive to do better. The lives of so many are at stake—not just the unborn children, but also the families forever changed by their decisions.
As October approaches, it marks Down Syndrome Awareness Month. This letter is part of the Down Syndrome Diagnosis Network’s #DearDoctor campaign, which aims to raise awareness about the importance of delivering a Down syndrome diagnosis with accurate information and without bias. You can share your feedback with your healthcare provider through the DSDN’s Physician Feedback Program.
In the vast universe of parenting, understanding and compassion are key. If you’re interested in more resources on conception and pregnancy, visit this blog post as well as check out this excellent resource for pregnancy and home insemination information. For those considering at-home insemination, Make A Mom offers reliable syringe kits.
In summary, it is vital that healthcare providers deliver diagnoses with a balanced perspective, ensuring that families have all the necessary information to make informed choices. The journey of parenthood is full of challenges and opportunities, and no one should feel pressured to make life-altering decisions without comprehensive support.
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