Dear Doctor,
Two years have passed since you informed us that our son would be born with Down syndrome, and I still find myself grappling with the unsettling memories of that twenty-minute conversation in your sterile office. For a while, I pushed those memories deep down, and it took my mother reminding me of your exact words for them to resurface.
When we entered your office, my husband and I instinctively knew the results of the noninvasive prenatal testing were not what we had hoped for. I could barely stand after receiving the phone call; I collapsed in disbelief. After regaining my composure, I assisted my husband, who was in distress, as he struggled to remove his military uniform, overwhelmed by the news.
Our knowledge of Down syndrome was limited, and it became clear that yours was too. Once I sat down on the examination table, you informed us of a 99.9% chance that our child had Down syndrome, presenting us with two stark options: terminate the pregnancy or carry it to term—without suggesting any further testing.
When I inquired about what Down syndrome would mean 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 your explanation regarding his diagnosis, filled with arbitrary limitations that you placed upon him.
You reassured me not to worry, suggesting that if we chose to continue the pregnancy, there was a way to approach it: “You don’t have to be a hero. We can keep the baby comfortable, but you don’t have to do anything drastic like open-heart surgery.” Your tone suggested that allowing our son to pass away was the preferable option if we couldn’t bring ourselves to terminate the pregnancy. You made a decision about the value of his life that was not yours to make.
Dear Doctor, I feel let down by you. You failed to adhere to the established guidelines that advise medical professionals on how to communicate a Down syndrome diagnosis. These guidelines emphasize presenting both the challenges and the positive aspects of living with Down syndrome in a balanced, informative manner.
You are not the only one who has missed the mark. A 2013 study indicated that for every parent who had a positive experience receiving a diagnosis, there were two and a half who faced a negative one. Alarmingly, nearly one in four families reported that a medical professional pressured them to consider termination.
While I don’t expect you to possess the in-depth knowledge of a specialist, I urge you to familiarize yourself with the basics of the most common chromosomal condition. Share with your patients the potential medical complications, but also inform them of the therapies that are available today. Discuss the likelihood of developmental delays, but also highlight how many children with Down syndrome are now successfully integrated into general classrooms, with numerous college programs available to them.
No one can predict the future of any individual, nor can anyone define their worth. An extra chromosome may introduce challenges, but it also brings the potential for remarkable opportunities.
As an experienced OB-GYN, I know I was not your first patient to receive this diagnosis and I certainly won’t be the last. It is imperative that you strive to do better. The lives of many depend on it—not just the unborn, but also the lives of your patients who will be forever impacted by the choices they make.
In honor of Down Syndrome Awareness Month, this letter is part of the Down Syndrome Diagnosis Network’s #DearDoctor campaign, aiming to raise awareness about the established guidelines for delivering a Down syndrome diagnosis with current and unbiased information. You can share your experience with your physician by participating in DSDN’s Physician Feedback Program.
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In summary, as we navigate the complexities of Down syndrome, it is essential for medical professionals to convey a complete picture of the diagnosis, including both challenges and possibilities, to support families in making informed decisions.
Keyphrase: Down syndrome diagnosis communication
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