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A Mother's Denial, a Daughter's Death

September 24, 2005|Charles Ornstein and Daniel Costello | Times Staff Writers

The number of children found to have AIDS continues to plummet, even as the overall number of new AIDS cases in the United States remains stuck at more than 40,000 per year.

In 2003, only 59 children under age 13 nationally were found to have AIDS, according to the CDC. That's down from 952 cases in 1992, officials said.

Health officials attribute the decline to regular testing of pregnant women and the use of antiretroviral drugs, such as AZT, during pregnancy and childbirth.

A 1994 study found that one quarter of pregnant HIV-positive women passed the virus to their babies when they did not take AZT. Subsequent studies found that the risk could be lowered to less than 2% when mothers received prenatal care, took a combination of antiretroviral drugs during pregnancy and labor, and allowed their infants to be given AZT in their first six weeks.

Federal health officials and AIDS experts say that HIV unquestionably causes AIDS, although it can take more than a decade to develop. HIV tests detect antibodies to the virus and are accurate predictors of who is infected, they say.

Dr. Peter Havens, a professor of pediatrics and epidemiology at the Medical College of Wisconsin, said that contrarian HIV theories promoted on about 400 websites are "bogus baloney."

"It's all pseudoscience," he said. "They choose one paper and deny the existence of 100 others."

Crumpled Like a Doll

The first hint that Eliza Jane was ill came at the end of April, when she developed a runny nose with yellow mucus, Maggiore told a coroner's investigator.

On April 30, Maggiore took her daughter to a pediatrician covering for Fleiss. That doctor found the girl had clear lungs, no fever and adequate oxygen levels, the coroner's report said.

Five days later, Maggiore sought a second opinion from Gordon. In an interview, Gordon said he suspected an ear infection but believed it could be resolved without antibiotics. In a follow-up call, he said, Eliza Jane's parents told him she was getting better.

Maggiore then asked Denver physician Philip Incao, who was visiting Los Angeles for a lecture, to examine her, the mother told the coroner's investigator. He found fluid in Eliza Jane's right eardrum.

On May 14, Incao examined her again and prescribed amoxicillin, Maggiore told the coroner.

Incao is not licensed to practice medicine in California.

The next day, Eliza Jane vomited several times and her mother noticed she was pale. While Maggiore was on the phone with Incao, the little girl stopped breathing and "crumpled like a paper doll," the mother told the coroner. She died early the next morning, at a Van Nuys hospital.

Fleiss, Gordon and Incao all are known for their unconventional approaches to medicine. Gordon and Incao are staunch opponents of mandatory vaccination of children; Fleiss is a vocal critic of male circumcision. Incao did not return repeated phone calls this week.

Alerted to the case by The Times, several medical experts said that doctors who knew Maggiore's circumstances -- that she was HIV-positive, hadn't been treated during pregnancy and had breast-fed her children -- should have pushed for the child to be tested.

If she refused, they should have referred the matter to authorities.

According to interviews and records, Gordon and Fleiss have long known Maggiore's HIV status and that she breast-fed her children.

Experts also said that when the girl became ill, any doctor who saw her should have treated her as if she were HIV-positive. That would have meant giving her a stronger antibiotic, such as Bactrim, instead of the relatively low-powered amoxicillin.

"If you look away from something you're supposed to be looking for, that's called willful blindness," said Michael Shapiro, an ethicist and law professor at USC, "and willful blindness is one aspect of determining the negligence."

In an interview this week, Fleiss said it would have been wrong to force Maggiore to test her daughter. "This is a democracy," said Fleiss, who has treated the daughter of pop star Madonna.

Gordon said he wishes he had tested Eliza Jane when she was ill in early May, but he doesn't believe he had sufficient reason to test her earlier.

"When it comes to HIV testing, I think that it's still legally a gray area," he said, depending on whether one believes the child's life is in danger. In Eliza Jane's case, he said, he did not.

David Thornton, executive director of the Medical Board of California, said his agency probably would investigate to determine whether the doctors erred, for example, in failing to report potential child neglect.

"If I would punish anybody," said Nancy Dubler, bioethics director at Montefiore Medical Center in New York, who learned of the case from The Times, "I would punish the pediatricians."

The Focus Turns

Now that authorities have settled on the cause of Eliza Jane's death, the focus has turned to the parents and their remaining child, Charlie.

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