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A Mother's Denial, a Daughter's Death

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

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 HIV caused AIDS.

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.

These days, given advances in HIV care, it's highly unusual for any young child to die of AIDS. What makes Eliza Jane's death even more striking is that her mother is a high-profile, charismatic leader in a movement that challenges the basic medical understanding and treatment of acquired immune deficiency syndrome.

Even now, Maggiore, a 49-year-old former clothing executive from Van Nuys, stands by the views she has espoused on "The Ricki Lake Show" and ABC's "20/20," and in Newsweek and Mothering magazines. She and her husband, Robin Scovill, said they have concerns about the coroner's findings and are sending the report to an outside reviewer.

"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.

It is a story not just about Maggiore and her family but about failures among child welfare officials and well-known Los Angeles County doctors.

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.

"I don't understand it," Fleiss said of Eliza Jane's death, "because I've never seen her sick or with anything resembling what she supposedly died of.... I don't believe I could have done anything to change this outcome."

Fleiss, who said he could be "convinced either way" on whether HIV causes AIDS, has known the family since before Eliza Jane was born. In 2000, the county Department of Children and Family Services investigated Maggiore and Scovill after a tipster complained that Charlie was in danger because he hadn't been tested for HIV and was breast-fed.

The department found no evidence of neglect, based partly on reassurances from Fleiss, according to an official report reviewed by The Times.

Now, with the death of Eliza Jane, authorities say they are poised to act.

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.

Maggiore said that she has spoken with police and expects to meet with the child welfare agency early next week. Scovill would not comment in detail.

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