Improving Care of the Medically Fragile Child

Victor Zapata seemed like a normal, healthy baby until suddenly, at just under 6 months old, he was gripped by intractable seizures. His condition steadily worsened; he suffered such a severe seizure on his first birthday that he was placed in an induced coma and was not expected to live. Miraculously, he did – although he was blind and partially deaf, and doctors much later diagnosed a rare genetic mutation that causes serious neurological damage, developmental deficits and digestive issues as well as seizures. Now 16, Victor needs round-the-clock care, including bathing assistance, getting nutrition intravenously, suctioning of his airways, and the aid of a ventilator to help him breathe when he has seizures.

Still, with a lot of support from Nemours/Alfred I. duPont Hospital for Children in Wilmington, Delaware, Victor has always been able to live at home. "I had a child who was almost in a vegetative state," says Olga Zapata, who gave up a career as a chemist to become his full-time caregiver. "There was no way one person could do this." Hospital staffers helped the Zapatas – husband Luis pilots corporate jets – set up a fully equipped room for Victor, fight for insurance coverage, apply for Medicaid to supplement the coverage, and contact local nursing agencies to procure some relief.

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