This story just makes my blood boil:
Christine Maggiore was in prime form, engaging and articulate, when she explained to a Phoenix radio host in late March why she didn’t believe The HIV-positive mother of two laid out matter-of-factly why, even while pregnant, she hadn’t taken HIV medications, and why she had never tested her children for the virus.
“Our children have excellent records of health,” Maggiore said on the Air America program when asked about 7-year-old Charlie and 3-year-old Eliza Jane Scovill. “They’ve never had respiratory problems, flus, intractable colds, ear infections, nothing. So, our choices, however radical they may seem, are extremely well-founded.”
Seven weeks later, Eliza Jane was dead.
The cause, according to a Sept. 15 report by the Los Angeles County coroner, was AIDS-related pneumonia.
…“I have been brought to my emotional knees, but not in regard to the science of this topic,” said Maggiore, author of an iconoclastic book about AIDS that has sold 50,000 copies. “I am a devastated, broken, grieving mother, but I am not second-guessing or questioning my understanding of the issue.”
One doctor involved with Eliza Jane’s care told The Times he has been second-guessing himself since the day he learned of the little girl’s death.
Dr. Jay Gordon, a Santa Monica pediatrician who had treated Eliza Jane since she was a year old, said he should have demanded that she be tested for human immunodeficiency virus when, 11 days before she died, Maggiore brought her in with an apparent ear infection.
“It’s possible that the whole situation could have been changed if one of the doctors involved ? one of the three doctors involved ? had intervened,” said Gordon, who himself acknowledges that HIV causes AIDS. “It’s hindsight, Monday-morning quarterbacking, whatever you want to call it. Do I think I’m blameless in this? No, I’m not blameless.”
Mainstream AIDS organizations, medical experts and ethicists, long confounded and distressed by this small but outspoken dissident movement, say Eliza Jane’s death crystallizes their fears. The dissenters’ message, they say, is not just wrong, it’s deadly.
“This was a preventable death,” said Dr. James Oleske, a New Jersey physician who never examined Eliza Jane but has treated hundreds of HIV-positive children. “I can tell you without any doubt that, at the outset of her illness, if she was appropriately evaluated, she would have been appropriately treated. She would not have died.
“You can’t write a more sad and tragic story,” Oleske said.
…Among the physicians involved in Eliza Jane’s care was Dr. Paul Fleiss, a popular if sometimes unconventional Los Feliz pediatrician who gained some publicity in the 1990s as the father of the notorious Hollywood madam Heidi Fleiss. He was sentenced to three years’ probation for conspiring to shield the profits from his daughter’s call-girl ring from the IRS, among other things.
…Los Angeles police are investigating the couple for possible child endangerment, said Lt. Dennis Shirey, the officer in charge of the child protection section. DCFS officials say they have opened an investigation to determine whether the parents should be forced to test Charlie, now 8.
…Before Eliza Jane’s death, Maggiore said she had tested neither of her children. Since then, in anticipation of the visit by child welfare officials, she has had Charlie tested three times, and he was negative each time, she said.
“Would I redo anything based on what happened?” she asked rhetorically during an interview this week. “I don’t think I would. I think I acted with the best information and the best of intentions with all my heart.”
…What set Maggiore apart became clear only when she talked about her views on medicine.
She didn’t vaccinate either child, believing the shots did more harm than good. She rejected AZT and other anti-AIDS medications as toxic. “I see no evidence that compels me that I should have exposed a developing fetus to drugs that would harm them,” she said.
…She breast-fed both children, although research indicates that it increases the risk of transmission by up to 15%.
…In the 25-year history of AIDS, there have been many advances but few victories. Prevention of infections and deaths among young children is one.
“This is one of the biggest public health and medical successes in the United States,” said Margaret Lampe, a health education specialist with the division of HIV/AIDS prevention at the U.S. Centers for Disease Control and Prevention.
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.”
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.
This is a Democracy! The right to willfully withhold medical treatment or to willfully put your child at risk is not a RIGHT!
…What is clear is that child welfare authorities had been told that Maggiore was HIV-positive in 2000 and that her son was at risk for the virus, according to agency records.
An investigator from the Department of Children and Family Services visited the home, according to a copy of the case report reviewed by The Times, but she did not have Charlie tested for HIV or talk to outside experts. She instead relied on her own observations and the assurances of Fleiss.
“Parents appear appropriate and extremely focused on child’s well-being in every aspect,” caseworker Rebecca McCauley wrote in February 2000.
Dr. Charles Sophy, medical director for the DCFS, acknowledged that his department may have erred.
He said the caseworker tried to do her job but relied entirely on Fleiss because the department, at the time, did not have its own medical experts to consult. But even with Eliza Jane’s death, Sophy said, it’s not entirely clear that Charlie is being neglected.
Legal experts said the problem lies in the official definition of neglect.
“DCFS is used to your prototypical neglect case where the house is filthy and the mother doesn’t care,” said Thomas Lyon, a USC law professor and expert in child abuse litigation. “They’re just not accustomed to the kind of neglect where you have an otherwise healthy, good parent.”
Since Eliza Jane’s death, Maggiore and her husband have kept a relatively low profile, her friends said. But word is slowly reaching HIV dissidents around the country.
Though shaken, most of them say they continue to support Maggiore and her contention that HIV is not the cause of AIDS.
For her part, Maggiore said that her daughter’s death has taken a toll on her health; she’s had trouble eating, sleeping and, this past summer, simply breathing. She’s treated her symptoms with Chinese herbs, walked five miles a day and practiced yoga, and is now feeling better, she said.
She went to a sympathetic doctor, she said. “If I had gone to a regular AIDS doctor and told them I was HIV-positive, I have no doubt they would have blamed it on that.”
In the weeks after Eliza Jane’s death, her parents created a website, http://www.ejlovetour.com , in her memory. Maggiore wrote lovingly of her daughter, wavering between despair at her loss and acceptance that Eliza Jane had simply chosen, as Maggiore put it, to “go home.”
She struggled most with the whys.
“Why our child ? so appreciated, so held, so carefully nurtured ? and not one ignored, abused or abandoned?” she wrote. “How come what we offered was not enough to keep her here when children with far less ? impatient distracted parents, a small apartment on a busy street, extended day care, Oscar Mayer Lunchables ? will happily stay?”
That last sentence uttered from this fools mouth just makes me shake my head. In her mind she was a better parent then those who feed their kids lunchables. A person who would not have her child tested for a deadly disease, who put her kids at risk of getting the disease she had by breast feeding them, a person who took her to doctors who agreed with her point of view….and she has the nerve to insinuate that she is the better parent! Explain your dead child then?
These 3 doctors and the dead childs parents need to be punished. She deserved so much more then they gave her.
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