Down syndrome- The Healthcare System – “We can do better”.
Guest Blog by David Bank M.D.
I first read about Trisomy 21 while I was in Medical School. Later in my career in the field of Pediatrics, I met and provided medical care for many children with Down syndrome. Despite these experiences, it was not until I met the family of “J” that I realized that I knew NOTHING about Down syndrome and the incredible potential the medical community has to better serve these families.
It was the fall of 2016 when I met Dan and Charlotte. They were the proud parents of “J,” an 18-year-old with Down syndrome who just graduated from high school and was preparing to spend his freshman year in college away from his family for the first time. Our meeting was related to building a closer relationship between the Down syndrome community and the pediatric providers in Central Texas. Dan and Charlotte shared with me the pain they felt when they were first informed of “J’s” diagnosis. Both the obstetrician and the geneticist gave them a grim outlook of the future they feared they would have to endure. Charlotte was a successful lawyer and was told by the geneticist, “I hope you weren’t planning on continuing your professional career.” Once born, “J” was taken to a pediatrician who was unfamiliar with the proper medical screening children with Down syndrome need in order to identify the multiple medical issues they are born with or can develop later in life. Dan and Charlotte were so frustrated with the lack of understanding and care of “J”, they chose to locate alternate providers. Fortunately, they had the means to take him to Baltimore several times each year to get the expert care they were looking for.
Next came the battle with the school system. Their goal for their son and other children with Down syndrome to be mainstreamed was unappreciated. Special needs classes resulted in regression and underperformance. Charlotte drilled into my brain the most crucial component for a child with Down syndrome to meet their full potential, early and aggressive speech therapy. I left my experience with Dan and Charlotte understanding their world a little bit better and appreciated their continuous efforts to advocate for “J”.
As a result of this and other encounters with parents, I have come to the conclusion that these parents have enough work to do to nourish their family unit, why does our healthcare system have to make their lives even harder. Is a Genetics or a Pediatric clinic really the right place for a Down syndrome program? Is seeing a pediatrician or specialist every 3 to 6 months enough? What about the issues that come up between these visits? I know we can do better. I believe the core of the medical care of children with Down syndrome belongs in their home. A relationship needs to be cultivated where families will always have the medical expertise they may need, available to them. A relationship where a medical team can help a family navigate through our fragmented, many times dysfunctional healthcare system. I have made it my goal in my practice and in teaching other medical professionals to do just that.
David Bank MD MBA
Medical Director, Pediatric Programs
Scottsdale Physician’s Group Virtual Care
Scottsdale, AZ
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