Three year old Eliza Jane Scovill died on May 16, 2005 of AIDS related pneumonia. The death of any child is a terrible tragedy, but is even more poignant if it is avoidable. When Eliza became ill, her mother, Christina Maggiore, neglected to tell the doctors that both she and Eliza were HIV positive. It is not clear that Eliza could have been saved by the time she was brought to the hospital, but without an accurate medical history, doctors lost valuable time in determining the causative agent, and therefore, the appropriate treatment for Eliza's pneumocystis carinii pneumonia. Pneumocystis is an otherwise harmless bacteria that causes pneumonia only in people who are severely compromised by AIDS or other immunologic failures.
Why did Christine Maggiore withhold this critical information? She did it because she is an activist who believes that HIV does not cause AIDS.
Maggiore had a homebirth with Eliza because no doctor would care for her unless she agreed to take medication to prevent the transmission of AIDS to her unborn child. She was counseled not to breastfeed Eliza, but she did so, and published pictures of herself breastfeeding Eliza to show her confidence in her belief that HIV does not cause AIDS. She never allowed Eliza to be tested for HIV, because she felt that there was "no need". After her daughter's death, she gave interviews claiming that she did not mention her HIV status, and the fact that her daughter was almost certainly HIV positive, because she did not want the doctors to "discriminate" against her daughter. Although the autopsy report and the slides of the pathology examination have been released publicly, Maggiore insists that Eliza died of an anaphylactic reaction to antibiotics, not of pneumocystis pneumonia.
Christine Maggiore is guilty of the medical neglect of her daughter Eliza. According to the American Academy of Pediatrics position paper Recognizing and Responding to Medical Neglect, written by Carol Jenny of the AAP Committee on Child Abuse and Neglect:
Several factors are considered necessary for the diagnosis of medical neglect:
1. a child is harmed or is at risk of harm because of lack of health care;
2. the recommended health care offers significant net benefit to the child;
3. the anticipated benefit of the treatment is significantly greater than its morbidity, so that reasonable caregivers would choose treatment over nontreatment;
4. it can be demonstrated that access to health care is available and not used; and
5. the caregiver understands the medical advice given.
Reasons for medical neglect include: poverty, lack of access to care, family chaos, lack of awareness, lack of trust in health care professionals, and caregiver’s belief systems described as:
Some caregivers have belief systems that are inconsistent with Western medicine. A parent of a child who has a serious illness may decide to rely on untested remedies or alternative medicines. Some caregivers will seek healing through religion rather than medical care...
The paper outlines the provider's ethical and legal obligations when confronted by medical neglect due to parental beliefs:
Medical neglect evaluations should focus on the child’s needs rather than the caregiver’s motivations or justifications. Religious objections, therefore, should not be granted fundamentally different status from other types of objections.
Although competent adults have the right to refuse life-saving medical care for themselves, the US Supreme Court has stated that parents do not have the right to deny their children necessary medical care. The court made this clear in 1944 in Prince v Massachusetts. "The right to practice religion freely does not include the liberty to expose the community or child to communicable disease, or the latter to ill health or death. . . . Parents may be free to become martyrs themselves. But it does not follow they are free, in identical circumstances, to make martyrs of their children. . . ." The American Academy of Pediatrics has taken a firm stance on the rights of seriously ill children to receive lifesaving medical care even if their parents subscribe to religious beliefs that are antithetical to medical care.
There is no special status granted to religiously motivated medical neglect, and therefore, there is no special status granted to medical neglect motivated by belief systems such as AIDS denialism.
Did society fail Eliza? Or do parents have the "right" to sacrifice the lives of their children because of their own delusions? There is a very good chance that Eliza would be alive today and AIDS free if her mother had followed medical advice. Did Eliza have a right to the best medical care that society can offer or does her mother's right to follow her own beliefs supercede a child's right to live a healthy life, or even to live at all.
What is the difference between the delusions of Christine Maggiore, and the delusions of vaccine rejectionists? Both have precisely the same scientific foundation, which is to say no foundation at all.
What are the responsibilities of health care providers who counsel AIDS denialism? Eliza's pediatrician was Paul Fleiss (Heidi's father), a pediatrician known for his unconventional views, who has said he could be "convinced either way" about the role of HIV in AIDS. Does he bear any responsibility for Eliza's death?
Christine Maggiore, for her own personal reasons, truly and deeply believes that HIV does not cause AIDS. Many vaccine rejectionists truly and deeply believe that vaccination is not safe. The risk of death from AIDS is much higher than the risk of death from vaccine preventable diseases, but the principle is the same. Do parents have a "right" to sacrifice the lives of their children on the altar of their personal beliefs?