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Best Care for Children and Adolescents with Down Syndrome

April 19, 2022

In a recently released issue of Pediatrics, the American Academy of Pediatrics (AAP) and the Council on Genetics with authors Dr. Marilyn Bull, Dr. Tracy Trotter, Dr. Stephanie Santoro and Dr. Celanie Christensen have published a revised Clinical Report (10.1542/peds.2022-057010), “Health Supervision for Children and Adolescents with Down Syndrome.”  This Guidance is a must read for practicing pediatricians – it gives us a framework and the evidence-based advice we need to make sure our care of patients with Down syndrome and their families is the best it can be. As in previous versions, the report begins with prenatal diagnosis, includes advice for delivering the diagnosis of Trisomy 21, and provides an age-based overview of key medical and psychosocial risks and screenings.

This Clinical Report serves multiple purposes. It should be considered a key reference to consult when a patient with Trisomy 21 comes for a health visit, but it is also an excellent teaching tool for use with trainees at all levels who may not even be aware of its existence and will be relieved to find comprehensive guidance. I also share it with families, either just Appendix 1 (“Summary of Down syndrome-specific care”) or the entire document, depending on their interest and health literacy. Families have expressed to me that they appreciate finding out that physicians are in the know and that the many referrals and endless extra health visits are purposeful and in support of their child’s health.

Clinical Reports and guidances are wonderful, but parents are of course the experts on their own child, and nothing should preclude us from learning from them. For example, a young mother whose first child unexpectedly had Down syndrome taught me that her infant could nurse best at the breast when she positioned the baby upright straddling her thigh. In doing this, she found that gagging and choking were greatly reduced, and the baby breastfed successfully for months. This advice has served me well over time, and I have shared it with other mothers of infants with Down syndrome and with low tone or pharyngeal dysfunction of other causes. I believe we can best establish ongoing shared decision making, good will, and collaboration with children and teens with Down syndrome and their families by bringing together evidence-based Clinical Reports like this one and the ideas and concerns of the family. Let us know what you think, and what you have learned from families of your patients with Down Syndrome by sharing your comments.

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