Dear Doctor,
Two years after you delivered the challenging news regarding our son’s Down syndrome diagnosis, I still find myself grappling with the surreal moments spent in your sterile office. At one point, I managed to suppress that memory, only for my mother to remind me of the details you shared that day, prompting them to resurface.
When my husband and I were called back into your office, we instinctively knew that the results of our noninvasive prenatal testing were not favorable. I remember collapsing to the floor after receiving the phone call, and after regaining my composure, I helped my husband out of his tight military uniform as he retched in our bathroom.
We were not well-versed in Down syndrome, and it seems you were not either. As I sat on your examination table covered in crinkly paper, you informed us of a 99.9% probability that our child had Down syndrome, presenting us with two options: terminate the pregnancy or carry on — without offering any further testing for confirmation.
When I inquired about the implications of Down syndrome for our child’s future, your response was disheartening: “At worst, he will never feed himself. At best, he may one day mop the floors of a fast food restaurant.” That was the extent of your discussion on his diagnosis, reduced to arbitrary limitations you prescribed.
You reassured me that if I chose to continue the pregnancy, there was an alternative: “You don’t have to be a hero. You can have the baby here, keep him comfortable, and avoid drastic measures like open-heart surgery.” Your tone suggested that if termination was not an option, then allowing our son to pass would be the preferable route. You decided his life was not worth living, a choice that was not yours to make.
Dear doctor, you let me down. You chose to disregard established guidelines on how to convey a Down syndrome diagnosis. These guidelines advocate for a balanced presentation of both the challenges and opportunities associated with a life with Down syndrome, delivered in an impartial manner.
Regrettably, you are not alone in this. A study from 2013 revealed that for every parent who had a positive experience receiving a diagnosis, there were two and a half who had a negative one. Furthermore, the same study found that nearly one in four families faced pressure from medical professionals to consider termination after a prenatal Down syndrome diagnosis.
While I do not expect you to possess the expertise of a specialist, I urge you to familiarize yourself with the basics surrounding this prevalent chromosomal condition. Inform your patients about possible medical complications, but also share the therapies available today. Discuss potential developmental delays, while also highlighting that many children with Down syndrome are now integrated into mainstream classrooms and that numerous college programs exist for them.
Dear doctor, no one can predict the future of another individual, nor can anyone assign worth to a person based on an extra chromosome. While it may introduce more challenges, it also opens the door to extraordinary opportunities.
As an experienced OB-GYN, I know I was not the first patient to receive this diagnosis from you, and I certainly will not be the last. It is imperative that you improve your approach. Lives are at stake—not only those of the unborn but also the lives of your patients who will carry the weight of their decisions long after.
October is Down Syndrome Awareness Month. This letter is part of the Down Syndrome Diagnosis Network’s #DearDoctor campaign, aimed at raising awareness about the importance of following established guidelines in delivering a Down syndrome diagnosis with accurate information and without bias. For those looking to share their experiences, I encourage participation in DSDN’s Physician Feedback Program.
In conclusion, the journey of parenthood is complex, and understanding the nuances of each unique situation is crucial. If you’re considering your own fertility journey, you might find valuable information in this post about couples navigating intracervical insemination. Additionally, resources like Make a Mom can assist in understanding fertility supplements that may enhance your chances. For anyone contemplating fertility treatment, the March of Dimes offers excellent guidance.
Keyphrase: Down syndrome diagnosis communication
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