Matthew Swan (left) with his sister, Catherine (right).
Matthew was sick again, and his mother, Rita Swan, was worried.
The 16-month-old had come down with a dangerous fever three times and, three times, Swan had called her family's Christian Science practitioner as mandated by their religion. Three times, Matthew had recovered from his illness. This, the fourth incident, was worse than any of the others.
For the Swans, then a devout Christian Science family living in Detroit, Mich., in 1977, it was enough to consider breaking with church doctrine and taking Matthew to a hospital.
The Swans' practitioner was not pleased when she heard the news.
"It will be a long, hard road back to Christian Science for you if you do this," she said.
Swan hesitated. Matthew had, after all, recovered three times already. The teachings of Christian Science, which claim that disease is an illusion best treated by prayer, appeared to be working. Meanwhile, Matthew was only getting worse.
"I don't think I'm willing to go into too many of the gory details," Swan said. "It was just really, really bad."
The Swans' practitioner insisted the disease was a problem of sin. Because Matthew was too young to be held accountable for his actions, the blame lay with his parents. There must be some grievance they harbored that explained the illness, the practitioner insisted.
"She made me write a letter to my father because of a quarrel I had with him years ago," Swan said.
Finally, the practitioner relented. She said Matthew likely had a broken bone, which is a medical exception in Christian Science doctrine. At the hospital, doctors concluded he suffered from spinal meningitis and needed emergency brain surgery. Surgery was a bridge too far for the Swans' practitioner. Incensed, she told them she would stop praying for Matthew if they went through with the operation. The Swans, however, had made up their minds.
Following the operation, Matthew was put on a respirator. Swan desperately searched for a Christian Scientist—any Christian Scientist—who would pray for his recovery, but she found no one. Finally, the trauma proved too much for the Swans' tiny son. Matthew died a week after surgery.
From the White House to the Graveyard
Almost 40 years later, children are still dying from their parents' decisions to withhold medical care. Some adults are opposed to vaccinations and other preventative treatments urged by medical scientists. Others still oppose medical care on religious grounds, an uncomfortable gray area that pits a child's well-being against the free practice of religion.
While many lawmakers struggle with that ambiguity, the answer couldn't be clearer to Swan. She now heads up Children's Healthcare Is a Legal Duty, or CHILD.
The Lexington, Ky.-based nonprofit works to end religion-based child medical neglect across the country. In recent years, members' work has focused specifically on Idaho. On CHILD's Idaho website, idahochildren.org, organization officials don't mince words: "Idaho is the worst state in the nation for letting children die with faith-based medical neglect."
Idaho is one of a handful of states that allows a complete religious exemption from the obligation to provide a child medical care, even if it results in death. The laws effectively create a religious defense against manslaughter because "criminal injury to a child" cannot be charged in cases of religion-based medical
neglect, Swan said.
"They believe that medicine is a temptation from Satan, and to give in is to give in to that temptation. They also believe to give in is for people of weak faith or no faith. People of the world are seen as tempted."
The Idaho Legislature passed its religious exemption laws in a no-fuss 1972 session. The bill was one of several enacted across the nation in quick succession thanks to pressure from Washington, D.C. It stemmed from two powerful Christian Scientist aides within the Nixon Administration, H.R. Haldeman and John D. Ehrlichman, who pushed religious exemptions into the Child Abuse Prevention and Treatment Act. In his book, Bad Faith: When Religious Belief Undermines Modern Medicine, Dr. Paul Offit details the fallout from their actions:
"Now, if state officials didn't abide by Haldeman and Ehrlichman's mandate, they couldn't receive money from [CAPTA programs]; within a few years, 49 states (the exception being Nebraska) and the District of Columbia had laws protecting religiously motivated medical neglect."
According to Swan, Idaho earns its dubious distinction as the worst state for religion-based neglect through a combination of lenient laws and unique religious makeup. Of particular note is Followers of Christ, a brand of Pentecostal Christianity that emphasizes a literal interpretation of scripture and the power of faith healing.
The Followers resided primarily in Oregon, but factions have sprung up in Idaho over the past 100 years. Swan believes Oregon's elimination of faith healing exemptions in 2011 increased migration by the Followers to the Gem State.
It is difficult to track child mortality among Followers of Christ because deaths often go unreported, with bodies buried on private property, Swan said. However, CHILD maintains a database of more than 200 child graves in Followers of Christ cemeteries. In the largest, Peaceful Valley Cemetery, 204 of the 592 graves belong to minor children. Of the graves dating from 2002 to 2013, 35 percent belong to minor children of stillbirths—that's more than 10 times the number of deaths among minor children and stillbirths statewide.
The first mention of Followers of Christ in Idaho records is a 1900 Idaho Statesman article referencing members' use of poisonous snakes in religious practices. Several other news articles in the early 1900s describe their propensity for snake handling. At least two articles, dating to 1915 and 1917, detail child deaths from medical neglect.
Linda Martin doesn't remember witnessing any snake handling growing up in Boise as a Follower of Christ member, although it was spoken of in sermons. Child neglect, on the other hand, ran rampant, she said.
"They believe that medicine is a temptation from Satan, and to give in is to give in to that temptation," she said. "They also believe to give in is for people of weak faith or no faith. People of the world are seen as tempted."
"My husband felt very strongly this was not Christian. It just could not be right."
Just as the Swans were told their sin led to Matthew's illness, Martin also experienced guilt over loved ones' poor health. On her 9th birthday, Martin's aunt went into labor and gave birth to a baby boy. The child died days later of pneumonia complications.
"I was told it was my fault because I had probably done something wrong," she said.
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According to Martin, Followers of Christ leaders don't usually encourage members to keep their children out of public school or separate themselves from society. However, she said they are extremely secretive about their doctrine. When she was asked what religion she followed in school, Martin said she was Christian Scientist in order to avoid both medical requirements and the need to explain her beliefs.
"[Church members] told me people outside would try to destroy the church," she said. "I would be taken away from family and never see them again.
"My big question for years was if you're not hiding anything, if you're not ashamed of anything, why so secretive?" she added.
Martin grew to loathe Followers of Christ services. The aggressive sermons and the members' behavior frightened her. She longed to find a means of escape, but as the Swans discovered in 1978, it's no easy thing to lose your religion.
Following Matthew's death, the Swans resolved to leave the Christian Science church.
"My husband felt very strongly this was not Christian," Swan said. "It just could not be right."
When they tried to withdraw their membership, however, church administrators did not make it easy. They told the Swans they were confused. They said there were members of the church who had lost children and went to church the very next day, eventually rising to higher positions. On one occasion, a church member warned them they "would see Matthew again in proportion" to their faith in God.
In the days that followed, the Swans received several calls from church officials asking them to reconsider their decision. Then came a bombshell. A Christian Science leader told Swan a member in a different church district had a child who also contracted meningitis. In that case, Christian Science treatments had worked, and the boy recovered. He even had the same practitioner as Matthew.
Swan was shaken. What if they were right? What if Matthew's death really was their fault?