Don't Tell, Don't Ask

A teenager born with HIV was never told of her status until it was too late. How this happened, and why, is now a matter of national debate.

Dominique was born December 12, 1984, at Jackson Memorial Hospital. Two years later Jonathan came into the world. Physicians at Jackson screened the children for HIV, and both tested positive. Their parents tested positive as well. In 1988 the family lost a fifteen-month-old daughter to AIDS. She was the couple's fifth child and had spent most of her life hospitalized. A year later the father of five left for Haiti alone and died of an AIDS-related illness in his homeland, according to Ana Garcia, head social worker and adjunct assistant professor at UM's Department of Pediatrics.

The parents had chosen to ignore the illness. By most accounts there probably was little communication between them. "The mother was very angry with her husband," says the UM outpatient social worker who wishes to remain anonymous. "In her mind she didn't fit the profile of a person with HIV. She was faithful to her husband, and she believed she had contracted the disease from him. There was a lot of resentment." Husband and wife even kept the family's diagnosis hidden from their two eldest sons, including 29-year old Antoine. He hadn't known AIDS had claimed the life of his father and baby sister, or that his mother and two siblings were HIV-positive. "I was lucky I wasn't infected," he says, his hands tightly clasped while staring down at the ceramic tile floor of attorney Mishael's home office.

Denial, resignation, and not enough education about HIV and AIDS were some of the factors that influenced Dominique and Jonathan's mother's decisions. "She didn't have an understanding of the HIV infection or AIDS virus," UM's outpatient social worker says. She attended some AIDS/HIV classes in Kreyol at UM, but Garcia believes the mother needed reinforcement from the state. "The DCF system must stay on top of education and information regarding families and children with HIV," says Garcia, who has been working with families affected by HIV and AIDS for eighteen years. "Families like this one are not getting any information from DCF." (According to Garcia the family had been on Medicaid but had lost their welfare benefits when they did not meet appointments with DCF caseworkers. "This family was so poor," she notes.)

The mother's beliefs also may have played a role in her refusal of treatment for herself and her children. "The illness wasn't a priority for her," says the UM outpatient social worker. "God was going to make everything okay; God was the only healer. Her focus was on praying and going to church."

UM's Pediatric AIDS Program at Jackson is one of the most renowned in the United States. In fact, Garcia says, together UM and Jackson handle more pediatric AIDS cases than any other program in the nation. "I'm really sure that doctors, social workers, and nurses at Jackson struggled greatly with this case," says Peter Havens, a member of the AAP, who also touts the UM-Jackson marriage as one of the most successful in the often despairing world of pediatric AIDS. Currently 320 children with HIV or AIDS are being treated at Jackson -- the majority of all HIV-infected minors in Miami-Dade County. (As of June 2000, there were 473 cases of HIV-positive children under age thirteen in the county.) Five years ago 55 underage patients at Jackson died of AIDS complications, Garcia reports. Last year there were only four deaths. But the hospital's esteemed program and hopeful statistics had little impact on Dominique and Jonathan's mother.

In 1997, at the age of thirteen, Dominique began suffering recurrent bouts of pneumonia. Three years would pass before Jackson and UM health care professionals finally disclosed to the teenager what she suffered from. By then Dominique already had developed full-blown AIDS, including signs of dementia associated with the disease.

In April 1998 Dominique's physicians at Jackson had begun noting "noncompliance with medical treatment, presenting hazards to health" and "a strong history of poor compliance with medications and clinic appointments," according to the federal lawsuit filed by Alan Mishael. Yet they took no action to address the situation. The complaint states Dominique had been suffering from numerous and severe medical complications. "She'd been a very, very sick child," says Dr. Walter Lambert, medical director of UM's Child Protection Team, a group of health care professionals who work with children and families referred to them by DCF after allegations of child abuse and neglect.

In May 1999, when Dominique did not take medication following a hospital stay for pneumonia, medical staff noted that "the patient's parent is still in denial" and that the "patient has not been compliant with medication partially because she does not know why she needs to take medication." That month a six-member team of physicians, social workers, and nurses planned to discuss disclosure with Dominique and Jonathan's mother for the first time. "We felt it would help Dominique deal with the illness better," says the unnamed UM outpatient social worker. "But Mom was very against us telling her children they had HIV." So medical staff kept silent, and Jackson's Public Health Trust did not report the case as medical neglect to Department of Children and Families partly because Dominique's mother finally had agreed to have the truth revealed during her daughter's next clinic appointment in June. But as usual Dominique missed her doctor's visit; no action was taken by Jackson and UM staff to follow up on disclosure, and PHT again missed an opportunity to refer the case to the DCF. "We refrained from pushing the issue as per further direction from legal counsel to the Public Health Trust, who advised risk management that we would not go against the parent's wishes," said the siblings' chief pediatrician, Dr. Charles Mitchell, in the lawsuit Mishael filed.

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