The unnecessary death of a little girl

Parental medical neglect is in the news again. On Friday a Minnesota judge ruled that parents cannot refuse chemotherapy for a child because of religious or cultural beliefs. Daniel Hauser, 13, was diagnosed with Hodgkin’s lymphoma in January. Hodgkins is among the most treatable forms of cancer and indeed, Daniel’s tumor shrank after his first round of chemotherapy, but Daniel’s parents were so distressed by how sick the chemo made him, they refused further treatment. Daniel’s cancer has begun growing again.

According to MSNBC:

[His mother] has been treating his cancer with herbal supplements, vitamins, ionized water, and other natural alternatives she learned about on the Internet — despite testimony from five doctors who agreed Daniel needed chemotherapy. Daniel told the judge during closed testimony that he has also been eating “green food” such as broccoli and beans, as well as eggs and fruit.

Fortunately the Court has intervened in this case and Daniel will restart treatment soon, but other children have not been so lucky. Eliza Jane Scovill died in May 2005 because her mother prevented her from getting appropriate medical treatment.

Three year old Eliza died of AIDS related pneumonia. 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 was 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, Maggiore 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 insisted that Eliza died of an anaphylactic reaction to antibiotics, not of pneumocystis pneumonia.

According to the American Academy of Pediatrics position paper Recognizing and Responding to Medical 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:

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…

Just as there is no special status granted to religiously motivated medical neglect, there is no special status granted to medical neglect motivated by belief systems such as AIDS denialism or “alternative” health.

Eliza Scovill died because of the beliefs of her mother and Daniel Hauser is at risk of dying for the same reason. Because of the imminent risk of death, the Court has intervened in Daniel’s case, but many other children are victims of less dramatic forms of medical neglect but there is no one to protect them.

And what of Christine Maggiore who endured the death of her daughter. It did not change her AIDS denialism and the result was a forgone conclusion. On December 27, 2008, Christine Maggiore died of AIDS related pneumonia. To the very end she insisted that HIV does not cause AIDS and refused the medications that could have saved her life.


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