Journal Archive >
2002 > February
South African doctor brings lessons from Tufts to his homeland
Dr. Larry Mubaiwa comes from a country where disabilities are considered shameful, and sick children are hidden away. It is a world in which the impact of AIDS is denied, and the resources with which to treat it are so scarce that every case brings agonizing life-and-death decisions.
Mubaiwa lives in South Africa, which is struggling to provide care for its people, seeking to overcome the problems of not enough money as well as attitudes that prevent the provision of good health care. In December, he finished a one-year fellowship at the Eliot-Pearson Department of Child Development that included an internship at Tufts-New England Medical Center. His wife, Victoria, also a physician, spent the year working as a researcher with the Massachusetts Healthy Families Evaluation, a program run by Eliot-Pearson. The Mubaiwas have returned to South Africa, where Lawrence hopes to put to work his new knowledge about special needs and child development.
The medicine of survival
Mubaiwa came to Tufts as a Fogarty Fellow in a training program funded by the U.S. Department of Health and Human Services' Maternal and Child Health Division. The principal investigator of the grant funding the program is Bennish. While at Tufts, Mubaiwa earned a master's degree in child development, focusing on studies in language disorders, pediatric psychology and special education.
"This program was very useful," Mubaiwa said. "In South Africa, we tend to concentrate more on issues of survival because children die from poor nutrition, diarrhea, pneumonia and HIV, and we don't look at special needs."
Mubaiwa said he plans to establish a rehabilitation center in South Africa for children with disabilities. It will include an assessment program to understand a child's strengths and weaknesses. He also will conduct a survey of children with disabilities so he can learn the magnitude of the problem in the region—something that has never been done.
The stigma of disabilities
"These children languish at home," he said. "There is a stigma attached to having a child with disabilities, and there are no services for them. Early intervention is unheard of. As these children become adults, their families take care of them, and most are just kept indoors.
"I have knowledge as a pediatrician, but the medical model is deficit-based," he said. "We find out what's wrong with a child and fix it with drugs. Now the approach is different: What can the child do and what can't the child do? What can we do to promote a better outcome?"
For a child with epilepsy, for example, "we're not just looking at medication but at the impact of the disease on the family. What is needed so the child can go to school? How can we adapt the school so we can tap the child's potential?"
The battle against HIV
In the United States, between 200 and 285 children are born each year with HIV, while in South Africa, 70,000 babies born each year are infected with the AIDS virus.
"Most of the kids," he said, "are dying because of complications related to HIV. The complications cause developmental disabilities in the long run because as the virus invades the brain, the brain becomes smaller. Some kids lose their language skills, lose muscle tone. Eventually, they fail to walk, and they may become mute." Mubaiwa said the numbers of children with disabilities due to HIV are supplanting cerebral palsy in an "unimaginable situation."
Mubaiwa said the South African government is refusing to provide medicine that would prevent the transmission of HIV to a baby in utero, even though it costs only $10 "and would be cheaper than dealing with the long-term complications."
"HIV is a miserable and demoralizing situation. Every day we have to make life-and-death decisions. If a patient comes in with complications, do we use scarce resources knowing they'll die? Do I continue IV fluids? Blood? It's very expensive. Care support issues become a dilemma. If you get a child with pneumonia, do you put him in the ICU on a ventilator? If he's blocking a bed, and someone comes in without HIV, do you turn off the machine because in six months he'll be dead anyway, and the other person needs the machine and will survive? Those are the challenges you face all the time."
The Tufts program Mubaiwa participated in will continue when one of his colleagues comes to the university next year to study nutrition and public health at the medical and nutrition schools as well as take courses at Eliot-Pearson. "The link with Eliot-Pearson will continue," he said. "There will be continued collaboration, and we will use the department as a resource."