When Delivering a Down Syndrome Diagnosis: First, Do No Harm

Dabbing her eyes with a tissue, my friend repeated the rhetorical question posed by the geneticist, “I don’t expect my dumb dog to come in from the rain, what do you expect this child to do?” referring to my friend’s unborn daughter he had just diagnosed with Down syndrome.

Just days before, I had commiserated with a different friend, her voice trembling, attempting to mimic the baritone of her OB GYN who asserted, “He will ruin your life. But fortunately we are in Massachusetts and you can abort up until week 24,” in reference to her unborn son who had just been diagnosed with Down syndrome.

Down syndrome is the most common genetic condition, affecting 400,000 Americans and is associated with cognitive and development delays.

The word “harmful” pales to actual pain inflicted on these parents. It’s been eight years and my eyes still well when I recall the geneticist informing me that my newborn daughter had Down syndrome, declaring, “You’ve probably seen ‘them’ bagging groceries.” Just hours old and expectations for her potential had been artificially capped. An injustice that still gnaws at me today. I had always assumed my own painful experience at the hands of an insensitive physician had been an isolated experience. But as I polled acquaintances within the disability community, nearly everyone had borne at least one hurtful comment that they could recite verbatim.

To be clear, not all interactions between physicians and parents are harmful. In fact, the vast majority of such interactions are constructive and pleasant. Years have passed since I have received an offensive comment about my daughter from a physician. But when a comment is delivered by a purported authority figure, it leaves an indelible imprint on the parent.

Primum non nocere, which is Latin for, “First, do no harm” is a traditional guiding principal adopted by most physicians. Physicians should consider extending the scope of this sentiment to their communications with a parent of a child with a disability.

I have discussed the topic of physician communications with thought leaders in the disability advocacy space, and the following best practices surfaced for how medical professionals can avoid “doing harm” in their communication with parents of individuals with disabilities.

1. Avoid prediction: Each child is unique with a broad spectrum of potential based on genetic expression, therapeutic intervention, environment and grit, among many other factors. Predicting the future poses the risk of both shortchanging potential and setting false expectations.

2. Lose not sight of abilities: Trust me, it is not lost on a parent of a child with a disability that many known and unknown struggles lie ahead. Focus also on abilities, not merely the disabilities.

3. Use “person first” language: All children, even those with a disability, are children first and ought not be defined by a condition. Just as you wouldn’t say “cancer kid” or label a child by his or her disease, avoid doing it for a disability. Rather than saying “Downs’ kid,” state “child with Down syndrome.”

4. Defer to the most well informed resource: Medical advances have improved significantly the life expectancy, quality of life and life potential across a range of disabilities. So if the last time a physician studied a certain condition was in medical school when Johnny Carson hosted the Tonight Show, s/he ought to kindly concede, “I don’t know,” and refer to a clinician who has more current knowledge on the condition at hand.

In short, health care professionals should consider talking about Down syndrome as if they were the parent receiving a difficult prognosis. The reality of the condition and the slate of implications may be difficult to digest in the moment. And the challenges imposed on the child are unfair. A tough reality, and there is no benefit to “sugar coating” it. But defining a child by his or her disability or casting misguided limitations on that child’s future potential, is an injustice. We simply ask: “first, do no harm.”

With the passage of time and thickening of skin, I have learned to more effectively advocate for my daughter by offering feedback to medical professionals on their communications, both in person and via email following an appointment. My feedback has been well received by clinicians when delivered in a constructive manner. And by doing so, it helps my own daughter as well as future generations of parents.

In that spirit, parents, please share your stories and tips with the hashtag #firstdonoharm

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