By John Kelly
Tuesday, January 16, 2007
Once a death sentence, HIV is now a disease that can be managed. For young people in Washington -- those infected at birth and those who contract the virus as adolescents -- a Children's Hospital clinic is a lifesaver. My assistant, Julia Feldmeier, has the story.
This is not what you typically expect to hear from someone who is HIV-positive:
"I was blessed."
It's Felicia who says this, a 20-year-old who was perinatally infected with HIV, meaning she has never lived a day without the virus swimming through her body, threatening to dismantle her immune system.
Across the table, Joshua Murray, 23, nods in agreement. He, too, was infected in the womb, consigned to a lifetime of medicine and watchfulness and coping, while his twin brother was born without a trace of the disease. Joshua does not really know his birth mother; an adopted child, he met her for the first time last year. She told him that she thought she contracted it from his father but that she couldn't be sure.
Joshua says, "I don't blame anybody for what happened."
Michael, 21, contracted the virus three years ago. He is not taking medicine, not yet. Instead, he's trying to keep his immune system strong by living healthy -- by eating right, exercising, getting ample sleep and keeping close tabs on his well-being.
Michael says: "I'm taking better care of myself now than I ever have in the past. I feel like I'm in the best shape of my life."
It took time for Felicia, Joshua and Michael to arrive at this point of acceptance. Felicia once landed in the hospital after she drank a glass of bleach, reasoning that the common disinfectant might kill her HIV. Joshua, too, was hospitalized, after downing a cocktail of unprescribed pills, hoping they would kill everything. Michael, who has known he is HIV-positive since he was 18, waited two years before telling his mother about his condition.
Yes, it took time -- and support. For this, they have the Burgess Clinic at Children's Hospital, established in 1988 to provide medical, social and mental health services to adolescents infected with HIV. Since its inception, the Burgess Clinic has cared for more than 400 adolescents in the Washington area.
"For many of our young people, with treatment, their immune system has improved. Their overall health has improved," says Dr. Lawrence D'Angelo, founder and director of the clinic.
Patients check in every three months so that doctors can monitor their general health -- weight, appetite, restfulness -- and watch for such ailments as a cough, cold or shortness of breath. Patients undergo lab tests to measure how much of the virus is circulating in their blood stream. For those who take medicine because their immune systems have been compromised by the virus, doctors at the Burgess Clinic repeatedly emphasize the importance of taking their pills regularly.
The clinic also provides psychotherapy for patients and their families -- to help them through the initial adjustment, for example, and to facilitate conversation about advanced care planning: When does the patient want to discuss death and dying? What are the patient's wishes?
For Felicia, Joshua and Michael, these are issues they think about, things they'll need to plan for. But with love and support -- from friends, family and doctors at the Burgess Clinic -- they can go on living with HIV.
Says Felicia, "It's not as hard and it's not as bad as people make it out to be."
Says Michael: "HIV is not necessarily a death sentence. There are a lot of young people living happily with HIV."How to Help
Children's Hospital is involved in all aspects of pediatric health in the Washington area, whether the patient is a baby born with HIV, a toddler battling a brain tumor or a teenager who takes a tumble off a skateboard.
And most important, no child is turned away because his or her parents can't afford to pay. To help ensure that will always be the case, The Washington Post mounts an annual fundraising campaign for Children's Hospital. Your tax-deductible gift will help pay the bills of kids who had the misfortune to be born poor.
Our fund drive goes through Friday. Please help us reach our goal of $500,000.
To donate, make a check or money order payable to "Children's Hospital" and mail it to Washington Post Campaign, P.O. Box 17390, Baltimore, Md. 21297-1390.
To donate online using a credit card, go to http://www.washingtonpost.com/childrenshospital.
To contribute by phone using Visa or MasterCard, call 202-334-5100 and follow the instructions on the recording.