Medical neglect caused horrific suffering for these children, ending in death or permanent impairment. Their parents failed them, but so did society.
I recently read something so horrific I can’t stop thinking about it. It continues to haunt me and will probably do so for a long time to come. When 911 responders answered a call, they were shocked to find an emaciated corpse:
Dressed only in a diaper and t-shirt, the 15-year-old boy weighed only 37 pounds. His waist was about three inches across. He had 44 ulcerating wounds on his body. Some were necrotic. One was so deep his jawbone was visible. A salivary gland was exposed in a neck wound…Most of his teeth had rotted down to the root. He had no neck muscles – the tissues had liquefied and the area was filled with pus. One worker said he looked “mummified.
Alex Radita had died of complications of untreated diabetes. More about his case later.
A few years ago, I wrote about faith healing and the conflict between religious freedom and child protection. Religious shield laws protect parents from prosecution if their actions were based on religious beliefs. Thanks to the hard work of Rita Swan and other activists, there are now sixteen states with no religious shield laws and religious parents can be prosecuted in those states. But elsewhere, notably in Idaho, children are dying because of medical neglect, and their parents are not being held responsible. The law allows Followers of Christ and other sects to literally get away with murder: letting their children die without medical treatment when they could have been successfully treated or cured. The pediatric death rate for these sects in Idaho is ten times the rate for the state of Idaho as a whole. The website CHILD (Children’s Healthcare Is a Legal Duty) is a great source of information on everything from faith-based medical neglect to quackery, sexual abuse, corporal punishment, and legislative actions. The quotation above and much of the information below is taken from the CHILD newsletter, from the latest issue, volume 3, 2016.
At age 3, Stephanie Dyer started having seizures. A doctor ran tests, diagnosed epilepsy and prescribed the anti-seizure drug Lamictal. He explained the need for follow-up and dosage adjustment, but Stephanie was never seen by a doctor again. Various doctors authorized refills without seeing the child. The child’s grandmother, a retired nurse, notified the authorities that Stephanie was not attending school and had health issues. When they visited the home, they found a seven-year-old in a diaper in a room with cat litter and feces on the floor. They observed that she was underweight, drooling, unresponsive, staring, and had abnormal movements. In the hospital, they found that she had brain damage and was in a near-vegetative state, unable to walk, talk, eat, swallow, sit, or hold her head up. She had contractures in her legs and feet that required surgery. Three years after being placed in a foster home and getting intensive rehabilitation and treatment by multiple specialists, she was walking and attending special education classes. She was on 3 anti-seizure medications and had been seizure-free for a year and a half. She has behavioral problems and can communicate only through an electronic device; she will continue to require specialized care for the rest of her life.
Although they continued to give her seizure medication, Stephanie continued to have seizures. The Dyers did not believe she had epilepsy: they believed she was possessed. They had many superstitious and paranormal beliefs and were convinced their home was haunted by ghosts and spirits. They consulted paranormal investigators and psychics and tried to have the home “cleansed.” When evaluated by psychologists, the father was diagnosed with schizotypal personality disorder with paranoid and narcissistic features, the mother with histrionic personality with features of mistrust, disordered thinking, rationalization, intellectualization, and argumentative paranoia. But they were considered responsible, capable of distinguishing right from wrong, and competent for trial.
At trial, the defense arguments were interesting, to say the least. They claimed the parents were guided by their spiritual beliefs and should be exempt from prosecution under the religious exemption law that had been repealed in Colorado in 2001. They tried to blame the medical system for not explaining epilepsy well enough to the parents. They even faulted DHS for placing the child with a foster family that didn’t believe in ghosts!
The prosecution showed that the parents did understand that Stephanie had a medical problem requiring drug treatment, and they surely understood that she needed further medical care, especially when her condition deteriorated so drastically. The judge agreed: they were sentenced to 15 years in prison.
Alex developed type I diabetes when he was two. His mother insisted he did not have diabetes and she and God would prove the doctors wrong. His parents apparently called in fake blood sugar readings, and when Alex was hospitalized at age five, his diabetes was out of control and he was near death. He was placed in foster care where he was properly treated and did well for a year. The social worker strongly recommended he not be returned to the parents; there were concerns about earlier neglect of two other children. The family had moved twice, preventing investigations from being completed, and the social worker was worried that they would move again. The judge ignored her advice and returned Alex to his parents, and he did well for the next three years. Then the mother refused to increase his insulin dosage and no doctor ever saw him again. As predicted, the family had moved again, from British Columbia to Alberta, and the BC social worker was instructed to close the file for lack of information.
Records in Alberta showed that he got thousands of dollars’ worth of diabetic drugs and equipment, but none in the last 6 months of his life. He did not attend school in Alberta. He was briefly enrolled in an online course but didn’t do the work and was dropped from the program with no follow-up.
When Alex died, the parents called members of their church to claim he had been resurrected from the dead. They belonged to the Romanian Apostolic Church, which has no objection to any medical care. They did give Alex insulin for several years before stopping treatment. According to the CHILD newsletter, “Their history suggests that they were determined to prove the doctors wrong even while giving insulin and used religion to justify their stubbornness.”
The crown prosecutor showed that the parents had been given plenty of information and had seen him deteriorate when insulin was withheld, yet they deliberately deprived him of insulin repeatedly and for long periods. The only reason he lived as long as he did was that he was starved; starvation was the only treatment that could prolong a diabetic’s life before we had insulin. The prosecutor argued that Alex’s death was planned and deliberate. The parents were convicted of first-degree murder and sentenced to life imprisonment with no possibility of parole for 25 years. They have seven surviving children who are collateral victims, deprived of their parents after the trauma of seeing them tried for murder.
Ryan was born at home with no medical attention and his birth was not registered. He did not have an Alberta health card. He died at age seven in March 2013 in Calgary of meningitis, pneumonia, and a strep infection. His mother had been treating him with dandelion tea and oil of oregano for what she thought was “a cold or the flu.” He got progressively worse, with pain, slurred speech and a weight loss of 10 pounds over the last two weeks of his life. When he collapsed, his mother finally called for help. Too late: he was DOA. He had been enrolled in school, but his attendance had been very erratic. In January 2017 his mother was found guilty of failure to provide necessities and negligence causing death. She will be sentenced in June. In a police interview, she said she was a failure, but only because she had waited for paramedics instead of taking Ryan to the hospital herself, and because she should not have enrolled him in school because he might have picked up germs there and the stress from school might have compounded his illness.
Parents were convicted, but others share the blame
There are laws in most jurisdictions that require anyone who suspects a child is in danger to report the case to the authorities. In all the above cases, opportunities to intervene were missed. Ryan Lovett’s erratic school attendance could have been investigated. Alex Radita didn’t attend school and was dismissed from an online course with no follow-up. When Alex moved from BC to Alberta, his file was closed; there was no communication between provinces. When he stopped getting his diabetic drugs and equipment, the change in pattern could have been flagged; someone could have asked why.
Doctors also share the blame: they repeatedly refilled Alex’s and Stephanie’s prescriptions without seeing them. That’s unethical. At most, they should have offered a small supply of medication to tide them over until they could get in for an appointment.
Conclusion: We can do better
Society has a duty to protect children. Parents do not have the right to endanger their children because of their belief systems. There are still many jurisdictions that exempt parents from prosecution if they act according to religious or other belief systems. In my opinion, all remaining religious shield laws should be repealed.
These children died or were left permanently impaired because their parents failed them. But society failed these children too. There were opportunities to report or intervene that might have saved these children. CHILD is right: Children’s Healthcare Is a Legal Duty, and a moral duty. Surely we can do better.
This article was originally published in the Science-Based Medicine Blog.