Dear Doctor,
Two years have passed since you delivered the news about our son’s Down syndrome, and I still find myself grappling with that unsettling 20 minutes spent in your sterile office. The memory was so painful that I buried it deep within me until my mother gently reminded me of the words you spoke that day.
When you called us back into your office, we already sensed that the results from our noninvasive prenatal test were not what we had hoped for. I remember collapsing to the floor after receiving that phone call, while my husband, overwhelmed, struggled to remove his military uniform before being sick in the bathroom.
Our knowledge of Down syndrome at that time was limited, and, sadly, it seems yours was too. As I sat on the examination table, you informed us of a staggering 99.9% chance our child had Down syndrome, presenting us with only two options: terminate the pregnancy or proceed without offering any further testing.
When I asked what Down syndrome would mean for our son’s future, your response was disheartening: “At worst, he will never be able to feed himself. At best, he might mop floors at a fast food restaurant.” That was the sum of your insight into his potential, filled solely with bleak limitations.
You reassured me, however, that if we chose to continue the pregnancy, we could simply keep our son comfortable, implying that letting him pass away would be the kindest choice. It felt as if you had decided his life held no value, a decision that was not yours to make.
Dear Doctor, you let me down. You overlooked established guidelines for delivering a Down syndrome diagnosis, which emphasize the importance of presenting both the challenges and the positive aspects of life with Down syndrome in an unbiased manner.
Regrettably, your experience is not unique. A 2013 study revealed that for every parent who had a positive experience with a diagnosis, there were two and a half who had a negative one. Alarmingly, it also noted that nearly one in four families faced pressure from medical professionals to terminate the pregnancy.
While I understand you may not have the same level of expertise as a specialist in Down syndrome, I urge you to familiarize yourself with the basics of this common chromosomal condition. Share with your patients the potential medical challenges, but also highlight the therapeutic options available today. Inform them of possible developmental delays while also mentioning that many children with Down syndrome are successfully integrated into general classroom settings and can access a variety of college programs.
Remember, dear doctor, that no one can predict the future of another human being or define their worth. Yes, an extra chromosome may present additional hurdles, but it can also open doors to remarkable opportunities.
As an experienced OB-GYN, I know I was not your first patient to receive this diagnosis, nor will I be the last. It is imperative that you strive to improve. The lives of many, both unborn and their families, depend on the choices made during these critical moments.
October is recognized as Down Syndrome Awareness Month. This letter aligns with the Down Syndrome Diagnosis Network’s #DearDoctor campaign, aimed at promoting awareness and adherence to guidelines for delivering a Down syndrome diagnosis with accurate and unbiased information. If you’re interested in learning more about this topic, check out this blog post that provides insights into home insemination.
In summary, it is vital for medical professionals to deliver sensitive information with compassion and thoroughness, ensuring families are informed of both challenges and hopeful possibilities. For more resources on insemination, visit Make a Mom. The NHS also offers excellent resources for those navigating pregnancy and insemination options.