In 1989, Gregory Storch, MD, medical director of pediatric infection control at St. Louis Children's Hospital, saw his first case of a child infected by an HIV-positive mother. Unfortunately, this wasn't an isolated case but the beginning of an epidemic. Each year, approximately 6,000 children across the country are born to mothers infected with the HIV virus. At the Helena Hatch Special Center for Women, located on the campus of Barnes-Jewish Hospital, 98 women gave birth to HIV-exposed infants between 1993 and 1996.
Like dandelions after a storm, medical and social services have cropped up throughout the community to address the needs of these children and their families. But without a coordinated effort to bring HIV-infected babies under consistent, long-term care that would address not only their medical needs but their staggering social problems, the havoc wrought by the epidemic will continue.
That's the conclusion made by the founders of Project ARK, (AIDS/HIV Resources for KIDS). A collaboration between St. Louis Children's Hospital, Washington University School of Medicine, St. Louis University School of Medicine and Cardinal Glennon Children's Hospital, Project ARK is a cooperative network of St. Louis and healthcare providers that deliver primary care to children with HIV.
Instrumental to the success of Project ARK is Kathleen McGann, MD. Dr. McGann represents St. Louis Children's Hospital through her work on a national level as one of only 64 physicians who have developed the new Health and Human Services guidelines and pediatric drug protocol currently being used to treat children infected with the AIDS virus. At St. Louis Children's Hospital, the Project ARK team, led by Drs. Storch and McGann, does its part to strengthen the infrastructure necessary for a community-wide assault on HIV. Pediatric AIDS patients are referred to the hospital from throughout eastern Missouri and Illinois.
During weekly Project ARK meetings, physicians, clinical nurse specialists, social workers, child life specialists and dietitians discuss the families they are helping. At these meetings, team members review recent test results and relay what they know about the families' circumstances. Each week, Project ARK social worker Kelly Ciciro brings a "Most Wanted" list of patients suspected of falling into noncompliance. The team makes plans for follow-up visits and phone calls to these patients.
More and more, team members have some good news to share. Take the case of 7-year-old Ashley. Diagnosed with HIV at birth, Ashley was not expected to live beyond her second birthday. She has beaten the odds thanks to a devoted grandmother and the potent activity of new anti-HIV drugs. Each month, Ashley travels to the National Institutes of Health in Bethesda, Md. to participate in an AIDS pediatric clinical trial. The protease inhibitors she takes are working wonders so far. Dr. Storch and the Project ARK team note her progress during their meetings.
"We have had dramatic improvements in the conditions of many of the kids we treat," Dr. Storch says. "We have the medicine it takes to keep these children thriving. Now, our biggest challenge is keeping families involved and compliant with extremely complicated treatments."
That's where the St. Louis Children's Hospital Project ARK team shines. When tests reveal a child slipping in weight or other factors, the team digs further to uncover the reasons why. Has the family missed appointments because of a lack of transportation? Has something gone awry with their Medicaid coverage? Has there been some other stressful upheaval?
"Our main goal is to give every family the same opportunity and access to care and research, regardless of their social or financial circumstances," explains Kim Donica, MSW, social worker. "Once we accomplish that, our next challenge is to keep these families under consistent care." If needed, Phyllis Ballard, RN, clinical nurse specialist, and other Project ARK team members go door-to-door to families who have missed their appointments. "Sometimes, a solution to their immediate problem is just a phone call away to a social service agency they didn't know existed," Donica adds.
In Ashley's case, that level of support has made the difference. "I would have been totally lost without Kim," relates Sara, Ashley's grandmother and legal guardian. "She introduced me to Dr. Storch and makes sure I get in touch with the services I need. I know Ashley is in good hands with St. Louis Children's Hospital."
Once a year, Ashley and her grandmother reward themselves with a trip to Camp Hope at the YMCA Trout Lodge in Potosi, Mo. The camp is hosted by Project ARK and provides families with a respite from the struggles of treating HIV. While Ashley plays, rides horses and swims, Sara can unload her frustrations to people who understand and learn some additional coping strategies.
In the past two years, the area's number of infections from HIV-infected mothers to their newborn children has dropped from 47 percent to zero. That's thanks in part to a collaboration between Washington University School of Medicine and the Helena Hatch Special Care Center for Women. Through the cooperative efforts of both programs, pregnant women and their newborn babies receive the anti-retroviral therapy that prevents mother-infant transmission. The quantitative success of Project ARK is evaluated by numbers: how many HIV infected children are treated and followed; how many pregnant women are screened for HIV; and the percentage of HIV infected women who receive appropriate therapy.
The qualitative success is more subjective. Are Ashley and children like her living the secure and happy lives they deserve in spite of the medications they must take and the social challenges they face? "When we can answer 'yes' in case after case, we know we're on the right track," Donica says.
