“I’m so sorry.” My youngest sister, Annie, was born during the spring of my freshman year of high school. These words, spoken by one of my closest friends, are etched into my memory, integrally intertwined with the events of that spring.
“I’m so sorry.”
I remember these words so clearly because they clashed dramatically with my own experience of my baby sister. Her birth was an occasion for joy, not consolation. She had been born without complications and in good health. She was a beautiful baby. She had come into the world with only one significant medical challenge: Down syndrome.
My friend’s well-intentioned but, in this case, misplaced attempt at consolation was my first direct encounter with the all-too-common conception that the birth of a child with Down syndrome is unfortunate, something to be avoided. I realized, for the first time, but not the last, that many people see my sister’s life primarily as an instance of Down syndrome, rather than as a life with intrinsic worth, a life to be celebrated.
What is my sister’s life like? Well, like most third graders, she plays on the soccer team at her school. She enjoys painting, and, for the last few months, painting her nails. She has friends at school, her own set of interests, and a unique, complex personality that has enriched my family. In short, my sister is happy, and that she has brought happiness and love to my family in a way that we could never have imagined. Her condition has not defined her. Annie might not live the typical, “perfect” life, but she lives her life perfectly as a beautiful and unique individual. Like all lives, hers is one of great potential, and of great worth.
In medical school, I have observed that our profession’s perspective on those with Down syndrome is somewhat complicated. On the one hand, I have seen my peers cultivate an ethos of sensitivity and caring that extends to all their patients, including those with Down syndrome. I have been so genuinely impressed by their thoughtfulness and kindness, and I know that in the future they will give my sister – and others with a disability – great medical care and great respect. Yet, on the other hand, I have sometimes felt that the concept of “Down syndrome” and the abstract discussion of those with this condition lacks the empathy that is afforded, in practice, to the individual. Here, I am thinking in particular of discussions that arose during our Genetics and OBGYN courses, when we learned about prenatal screening for Down syndrome. Although individuals with Down syndrome were always discussed with respect, I sometimes felt that the emphasis placed on the success of these screening programs made the birth of those with Down syndrome seem less than ideal.
I am aware that any discussion of this can be precarious, as this is often a sensitive and sometimes deeply personal topic that has affected many more families than just my own. I do not intend to cast aspersions on any members of the medical profession, or to claim that prenatal testing cannot be beneficial to families as they plan for the birth of their child. Rather, I simply want to say that, as medical professionals, we should be cautious in these prenatal discussions not to imply that the life of a person with Down syndrome is undesirable. Certainly, it is true that the medical challenges associated with a diagnosis of Down syndrome are less than ideal. However, I think we must be careful to ensure that our admirable desire to avoid these complications does not simply slide into the easier solution of avoiding the individual, and the unique impact each of these individuals can have on the world.
If I could impart one piece of advice on behalf of the Down syndrome community, it would be simple: listen. Listen to the person with Down syndrome, and listen to their families. When you encounter a person with Down syndrome, whether it is in your medical practice, or at your child’s soccer practice, do not jump to conclusions about quality of life, or rush to offer a heartfelt but misplaced “I am so sorry.” Do not impulsively attempt to empathize, or assume the value or quality of a life merely because you know the medical challenges that the extra twenty-first chromosome might entail. My sister’s life has certainly had challenges – most lives do. Yet, it has also been beautiful and complex and full in a way that no prenatal test can predict.
Furthermore, to my fellow medical students and future colleagues, I offer a challenge: do not settle for the deceptively simple solution. Do not confuse elimination of the problem with cure of the condition. Instead, work for medical solutions and innovations that will better the care of those with Down syndrome.
Finally, I would invite you to reach out if you have any questions or comments regarding this piece. I know that it is a complex topic, but to me, to many others, to my sister, it is an incredibly important one as well.
Jeanne Farnan is an MS2 at the Perelman School of Medicine. Jeanne can be reached by email at [email protected].
