Children with medical complexity: Caught in a political and economic crossfire

January 2, 2013 by MassDevice

What will happen to medically complex children if insurance coverage is reduced and fewer pediatricians are trained to care for them? (Image: Wikimedia Commons)

By Jay Berry

My first encounter with a children' hospital was as a first grader in 1980, when my 5-year-old cousin was diagnosed with cancer. Although her family was challenged to afford her cancer treatments, St. Jude Children' Hospital in Memphis welcomed her and treated her cancer into remission. I remember my parents saying, "Everybody in that hospital loves children. No child is turned away."

In 1997, walking into the Children' Hospital of Alabama as a medical student, I felt the same sense of hope and courage. Everyone on the staff believed that they could make a difference in the lives of the children and families, despite the horrific illnesses that many of the children endured. I knew, immediately, that I wanted to become a pediatrician and to learn how to care for sick children.

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Nearly 15 years have passed, and I’m still learning. As a general pediatrician with the Complex Care Service (CCS) at Boston Children' Hospital, I care for "medically complex" children. These children have complex chronic health problems like severe cerebral palsy and Pompe' disease. Many of them rely on medical technology, like feeding and breathing tubes, to help maintain their health. They routinely see a myriad of different providers to manage their health problems. In CCS, we try to optimize the health and well-being of these children by meeting their health needs, coordinating their care and creating proactive care plans for them.