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<\/a><\/p>\nDabbing her eyes with a tissue, my friend repeated the rhetorical question posed by the geneticist, \u201cI don\u2019t expect my dumb dog to come in from the rain, what do you expect this child to do?\u201d referring to my friend\u2019s unborn daughter he had just diagnosed with\u00a0Down syndrome<\/a>.<\/p>\n Just days before, I had commiserated with a different friend, her voice trembling, attempting to mimic the baritone of her OB GYN who asserted, \u201cHe will ruin your life. But fortunately we are in Massachusetts and you can abort up until week 24,\u201d in reference to her unborn son who had just been diagnosed with Down syndrome.<\/p>\n Down syndrome is the\u00a0most common genetic condition, affecting 400,000 Americans<\/a>and is associated with cognitive and development delays.<\/p>\n The word \u201charmful\u201d pales to actual pain inflicted on these parents. It\u2019s been eight years and my eyes still well when I recall the geneticist informing me that my newborn daughter had Down syndrome, declaring, \u201cYou\u2019ve probably seen \u2018them\u2019 bagging groceries.\u201d 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\u00a0disability<\/a>\u00a0community, nearly everyone had borne at least one hurtful comment that they could recite verbatim.<\/p>\n 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.<\/p>\n Primum non nocere<\/em>, which is Latin for, \u201cFirst, do no harm\u201d 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.<\/p>\n 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 \u201cdoing harm\u201d in their communication with parents of individuals with disabilities.<\/p>\n 1. Avoid prediction:<\/strong>\u00a0Each 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.<\/p>\n 2. Lose not sight of abilities:<\/strong>\u00a0Trust 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.<\/p>\n 3. Use \u201cperson first\u201d language:<\/strong>\u00a0All children, even those with a disability, are children first and ought not be defined by a condition. Just as you wouldn\u2019t say \u201ccancer<\/a>\u00a0kid\u201d or label a child by his or her disease, avoid doing it for a disability. Rather than saying \u201cDowns\u2019 kid,\u201d state \u201cchild with Down syndrome.\u201d<\/p>\n 4. Defer to the most well informed resource:<\/strong>\u00a0Medical 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, \u201cI don\u2019t know,\u201d and refer to a clinician who has more current knowledge on the condition at hand.<\/p>\n 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 \u201csugar coating\u201d it. But defining a child by his or her disability or casting misguided limitations on that child\u2019s future potential, is an injustice. We simply ask: \u201cfirst, do no harm.\u201d<\/p>\n 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.<\/p>\n In that spirit, parents, please share your stories and tips with the hashtag #firstdonoharm<\/p>\n\n\n
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