Page 9 - Christiana Care Focus October 2018

| Cover Story
“It took a long time to perfect, as many good things do. But Christiana Care has committed to serving people with special health care needs and we are eternally grateful.”
Terri Hancharick
A long journey pays off
She met Dr. Friedland, chief of Medicine-Pediatrics at Christiana Care, at a conference on medical transition, and he became Brigitte’s primary care doctor.
Soon after she was invited to be on a committee for transition through duPont Hospital for Children. This began a journey that lasted many years and led to another committee at Christiana Care focused on developing better transition care for the more than 700 patients aging out of duPont Hospital for Children every year.
“Patients with CP have many secondary conditions, such as visual impairment, seizures, osteoporosis, arthritis, swallowing and breathing difficulties,” she said. “There also are mobility issues. Most people with severe CP use a wheelchair, walker or some other mobility device. They need home modifications, an accessible shower, lifts to get them out of bed in the morning and into bed at night, physical therapy so that their muscles do not contract, ramps to get out of their homes, an accessible van to get them into the community. Parents were on their own in finding these services and supports.”
Their work paid off. Mother and daughter were very excited when in 2009 Christiana Care opened the Transitional Care Practice (now a part of the Center for Special Health Care Needs).
”People with disabilities were able to have a primary care doctor who understood their disability or complex health care needs, whether it be Down syndrome, cystic fibrosis, hemophilia, sickle cell disease or other chronic condition,” she said. “There were knowledgeable social workers, skilled physicians and an accessible facility. But there still was no cerebral palsy program — until now.”
The Cerebral Palsy Program opened with Brigitte as the first patient on Sept. 19. Dr. Miller was there to greet her.
“It took a long time to perfect, as many good things do,” she said. “But Christiana Care has committed to serving people with special health care needs, and we are eternally grateful. The people they are now serving are complicated ... and challenging, but Christiana Care sees them as patients who deserve the care that gives them a long, fulfilling life. And with the appropriate medical interventions and the support to live in the community, they will now be on a level playing field with everyone else.” 
“We visited doctors in Maryland, New York and Pennsylvania and still did not find what we had at Nemours. Primary care was also a gap. Brigitte had a wonderful pediatrician who understood her, but we had to leave that practice when she was 18 because it was time to move on to the adult world. We went through several primary care doctors before we found Dr. Allen Friedland.”
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