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Nancy Karthas, Christopher Anstosopoulos and Sandra Burchett look at his photo album. |
When Christopher Anastosopoulos, 19, was brought to Children's Hospital Boston as a 10-month-old baby, doctors confirmed that he had been infected with HIV before he was born. Both of Christopher's parents had HIV (and later AIDS) and passed away before he was 10, and his relatives sought treatment in his home state of Maine. When Christopher was 13, his grandparents, Pete and Anne, were awarded custody and immediately brought him back to Children's for care.
Over the years, Christopher battled many infections, and by the time he arrived at Children's, his body had built up such a resistance to his medications that they became ineffective and he suffered a stroke that caused lasting developmental delay. When his grandparents brought him in, he weighed just 59 pounds.
At Children's, Christopher became part of the Children's Hospital AIDS program (CHAP), which started in 1985, during the height of the epidemic. CHAP is made up of physicians, nurses, social workers, counselors and nutritionists who offer HIV/AIDS clinical treatment, participation in HIV clinical trials, counseling and mental health services. Each patient is assigned a team, and Sandra Burchett, MD, MSc, director of CHAP, Nancy Karthas, CPNP, RN, MS, nurse practitioner, and a social worker, now Jackie Miranda, LICSW, took charge of Christopher's case and started him on a new treatment regimen. "The team approach
enables the family to have a trusting, therapeutic relationship with consistent care providers who know their particular situation," says Karthas.
A few years ago, Christopher's HIV progressed to AIDS. "HIV affects everybody differently," says Karthas. The transition from HIV to AIDS occurs when a patient comes down with an illness enabled by the AIDS virus. In Christopher's case, the virus attacked his neurological system, leaving him with speech difficulty. "But we were able to get him on track," says Karthas.
Christopher's CHAP team coordinates all of his care, including physical and occupational therapy and neurological appointments, and helps manage his home care in Maine. They taught Anne and Peter, his grandparents, how to administer feedings through Christopher's gastrostomy tube and medication injections when he wasn't able to keep down food or medicine. When his medication regimen changed from two shots a day to a pill, the team taught them to keep a meticulous chart of his medications and stick to nutritional guidelines. If Christopher refused to eat his vegetables just once, Anne made note of it and reported it back to the team. "We can prescribe all the medicine in the world, but if you don't eat well and get the right amount of rest, they won't work," says Karthas.
Christopher's family was confident in Children's care. CHAP, one of a small number of pediatric HIV/AIDS centers, is on the cutting edge of new research to improve patients' outcomes and continually enrolls patients in clinical trials to test new medications. Christopher participated in several HIV research trials. "The doctors explained that he wasn't only helping himself, he was helping a lot of other children down the road," says Peter. Christopher appreciated another perk. "My favorite part was the money you get for participating!" he says.
Throughout the set-backs and triumphs of his treatment, Christopher used the tranquility of Children's Prouty Garden and a surprise visit from Red Sox pitcher Tim Wakefield to motivate him when he was at his sickest in 2001. "Take one day at a time, that's how I did it," he says.
In a way, Christopher has grown up with the CHAP team. When it started, CHAP patients weren't expected to live past grade school. Now, the new and constantly improving medications have completely changed the focus of CHAP and are helping patients like Christopher lead full lives. "We've really seen HIV/AIDS go from a terminal to a chronic illness," Karthas says.
In October, Christopher came to CHAP for his last appointment. He reached the bittersweet age when patients graduate into adult-centered care. Now, he'll receive care from an adult AIDS specialist in Maine recommended by Karthas and Burchett. It's a good time to move on, as Christopher just graduated from high school, his virus is completely in control and he's feeling healthy. Anne and Peter can't say enough about their CHAP team on the day they bid Children's farewell. "We would have been lost without them," says Anne. "CHAP got him to where he is today and if it wasn't for them, he wouldn't have made it. They're like family to us." |
