When Faith Fails Children.

Religion Based Neglect: Pervasive, Deadly ... and Legal?

My husband Douglas and I were devout, lifelong Christian Scientists until 1977 when we lost our only son Matthew as a result of our religious beliefs regarding medical care. It's hard for most people to understand this. It's hard for many to grasp how parents could watch a beloved child suffer, yet not call a doctor. I need to begin, therefore, by describing the pressures involved.

The First Church of Christ, Scientist, founded in the late nineteenth century by Mary Baker Eddy, teaches that all disease is caused by sin. As little Matthew lay helpless with a raging fever, his body and bedding soaked with perspiration, the Christian Science practitioners told us that our negative feelings were making our baby sick. Our doubts, fears, lack of gratitude to them, and problems with relatives were the sins causing Matthew's illness.

Christian Science theology had trained us to believe that physicians don't really heal--at best, they only relieve symptoms; the underlying cause of the disease remains a moral problem that God alone can solve. Furthermore, this church doesn't allow its practitioners to give spiritual treatments to those who voluntarily go to a physician. Such a rule, as contrasted with the teachings of most other religious denominations, instructs that God and a doctor are mutually exclusive alternatives.

The Christian Science church also opposes medical diagnosis as much as it does medical treatment. Because of this, my husband and I had no way of acquiring rational information about Matthew's illness without breaking church rules. We wanted relief for our baby and considered taking him to a doctor, but we were terrified that the doctor wouldn't be able to treat the disease, which was a mystery to us, and then we'd have no way to resume the Christian Science healing. Thus, if we made the wrong decision, we could find ourselves bereft of help from both medical science and God.

On the twelfth day of his illness, however, a path of action seemed to open for us. The practitioner told us that Matthew might have a broken bone and that the Christian Science church does allow members to go to doctors to have bones set. Immediately we took Matthew to a hospital. As I walked in with our nearly dead baby in my arms, I asked the staff to check him for only the broken bone. But later, when we phoned our practitioner from the hospital, expecting her to continue praying for Matthew, she indignantly rejected us, saying that she had "seen all along" we were lacking in faith.

Our baby was diagnosed with h-flu meningitis, which has been routinely treated with antibiotics since the 1940s and is vaccine-preventable today. The doctors explained to us how the disease had caused the symptoms we had seen. That's when we realized that the very things the Christian Science practitioners had insisted were signs the religious treatments were working were, in fact, signs of impending disaster. (For example, one practitioner, who observed Matthew's convulsions, said he might be "gritting his teeth" because he was "planning some great achievement.")

Matthew lived a week longer in intensive care on a respirator and then died. Immediately afterwards, my husband and I left the Christian Science church.

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Sadly, our experience isn't unique. There have been far too many other children who have suffered and died under similar circumstances. This is why my husband and I founded Children's Healthcare Is a Legal Duty, Inc. (CHILD), a national membership organization that promotes the rights of children to medical care and opposes religion-related abuse and neglect of children. And this is why we think it is important to share not only our own story but those of other parents and their children.

SHAUNTAY WALKER, age four, died of meningitis in Sacramento, California, in 1984. She was home sick from nursery school for seventeen days but the school staff didn't report the matter to Child Protection Services. When her aunt observed that the little girl was comatose and then threatened to call the police, Shauntay's mother moved her to a Christian Scientist's home, where the girl died.

AARON NORMAN, age ten, died of untreated diabetes in 1987 near Spokane, Washington. Members of the fundamentalist church his parents belonged to told the minister and church elders they suspected the boy had diabetes, but no one told his parents. When Aaron wet the bed, his father thought the boy had been masturbating and beat him with a board. The minister and elders encouraged the father to continue beating Aaron until he confessed.

AMY HERMANSON, age seven, died in 1986 in Sarasota, Florida. She was a talented little girl who took piano, violin, harp, and art lessons and excelled in academic subjects. Many teachers and employees at her mother's business observed Amy's weight loss and lethargy over a four-week period but didn't report it to Child Protection Services. They were unaware she had diabetes; others assumed the parents were providing medical treatment. One employee said she didn't file a report with CPS because she knew the Herman sons were Christian Scientists and they were "signing [her] paycheck." A neighbor urged Amy's mother to take her to a doctor, but the mother refused. Moments later, Amy crawled into the room on her hands and knees and begged her mother to take her home. Her aunt said that Amy was incoherent and unable to focus her eyes the day before she died.

The Hermansons were later convicted of felony child abuse and third-degree murder. But in 1992, the Florida Supreme Court overturned their conviction on fair notice grounds. Citing a religious exemption in Florida's civil code, the court said, "The statutes have created a trap that the legislature should address." To date, however, the Florida legislature has not done so.

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ROBYN TWITCHELL, age two, who lived near Boston, Massachusetts, died of peritonitis and a twisted bowel after a five-day illness in 1986. It began with him screaming and vomiting. By the second day his parents, Ginger and David Twitchell, were calling the Christian Science church's worldwide public relations manager for advice. He assured them that the law granted their right to use Christian Science treatment instead of medicine.

On the fourth day a church nurse recorded: "Child listless at times, rejecting all food, moaning in pain, three wounds on thigh." The nurse force-fed him and directed his mother to feed him every half hour. On the fifth day, he was vomiting "a brown, foul-smelling substance." Autopsy photos show him with bright red lips and chin, probably because the acid in the vomit had eaten his skin. His scrotum and about fifteen inches of his ruptured intestine were jet black because their blood supply had been cut off. He was so dehydrated that his skin stayed up when pinched. Neighbors closed their bedroom window so they wouldn't hear the boy's screams.

At the Twitchells' trial, a Christian Science practitioner testified that she had achieved a complete healing of Robyn and that he had run around happily chasing his cat fifteen minutes before he died. Rigor mortis had set in before the parents called 911.

Ginger and David were convicted of manslaughter in 1990. In 1993 the Massachusetts Supreme Judicial Court overturned the conviction on a technicality but also ruled that parents had a legal duty to provide necessary medical care for their children regardless of their religious beliefs.

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IAN LUNDMAN, age eleven, died of diabetes in 1989 in suburban Minneapolis, Minnesota. His father had left the Christian Science church but didn't have custody of him. The boy lost weight and became lethargic. A school official noticed a fruity odor on Ian's breath--a classic diabetes symptom--but didn't recognize it as such, nor did she know of his mother and stepfather's religious beliefs against medical care.

The custodial parents retained a Christian Science practitioner for spiritual treatment of Ian's illness (who later billed the parents $446 for his prayers). An unlicensed Christian Science nurse sat by Ian's bedside for the last five hours of his life as he lay in a diabetic coma. She knew he wasn't responding to anyone; she observed his vomiting, labored breathing, excessive urination, facial spasms, and clenched teeth. Nevertheless, her concept of care was to give him drops of water through a straw and to tie a sandwich bag and washcloth around his scrotum. She didn't call for medical help or ask his mother to obtain it. When Ian's father phoned and asked to speak to his son, his ex-wife said he was fine but asleep. Six hours later the boy died.

His father later filed a wrongful death suit against Ian's mother and stepfather, the Christian Science practitioner and nurse, the Christian Science church, and other church agents. A jury awarded him $5 million in compensatory damages and $9 million in punitive damages, but the award was later reduced to $1.5 million. An appellate court dismissed charges against the church but held that the practitioner and nurse had a duty to obtain medical care for the child. The Minnesota and U.S. Supreme Courts declined to review the ruling. Although this 1996 case--McKown v. Lundman--is the first suit in the wrongful death of a Christian Science child to be presented to a jury, Christian Science church officials trivialize the appellate court ruling, saying it is relevant only to Minnesota. "We'll still continue to practice our religion as we have been for a hundred years," said the church's public relations manager in the January 23, 1996, New York Times.

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ANDREW WANTLAND, age twelve, died in 1992 in La Habra, California, of untreated diabetes. He experienced frequent urination, vomiting, and rapid weight loss before becoming comatose and dying. Although his parents had joint custody and his mother had specified that she wanted medical care provided for their children, his Christian Science father refused to inform Andrew's mother of his illness until it was too late.

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ELIZABETH ASHLEY KING, age twelve, died of bone cancer in Phoenix, Arizona, in 1988. She had missed seven months of public school before neighbors alerted Child Protection Services. By the time the court-ordered physician examined Ashley her condition was terminal. The tumor on her leg had grown to more than forty inches in circumference, her skin was stretched so thin there that she bled almost from being touched, and her genitalia were partially rotted away from lying in her own excrement. But, because she reportedly requested it, the state allowed the girl to be placed in an unlicensed Christian Science nursing home. There, in extreme pain without benefit of sedatives, she spent the last three weeks of her life. Nursing home records show seventy-one calls for more prayer treatments for pain. Once, a nurse reminded her of the lateness of the hour and that other patients were trying to sleep.

HARRISON JOHNSON, age two, died in September 1998 when he was stung 432 times by yellow jackets in Melbourne, Florida. His parents didn't call 911 until seven and a half hours later after the toddler became unconscious. Harrison's parents, Kelly and Wylie Johnson, belong to the Bible Believers' Fellowship, a tiny religious group that advocates exclusive reliance on prayer to heal and claims that doctors are sorcerers. "Jesus Christ always, when people came to him, he healed them," Wylie told police. "He never sent them to anyone, let alone a doctor."

Later, in May 1999, the Johnsons were charged with aggravated child abuse but not manslaughter because immediate medical intervention might not have saved Harrison's life due to the amount of insect venom he received proportional to his body weight. Nevertheless, Harrison's chances for survival would have been much better with intravenous fluids, assistance in breathing, and other medical measures. The parents were acquitted by a jury.

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CALAHAN DOUGLAS SHIPPY, age fourteen, died December 28, 1998, in Rembey, Alberta, from juvenile-onset diabetes after several weeks of illness. His parents--Ruth and Steve Shippy, affiliated with Followers of Christ, a group which advocates exclusive reliance on religious rituals for healing disease--were charged with criminal negligence resulting in death and failing to provide the necessities of life to a dependent. Crown Prosecutor Ian Fraser, in prosecuting the Shippys, said the parents were aware that Canadian law required them to seek medical care for Calahan because they had moved to Idaho in 1984 when Canadian child welfare officials began investigating them for withholding medical treatment from another of their children.

At the ensuing bench trial, the Shippys testified they were aware of Calahan's illness only during the last two days of his life and thought he had the flu. Because the boy was home-schooled, there were no witnesses to contradict them. Justice Douglas Sirrs convicted them of failing to provide necessities of life to a dependent but acquitted them of criminal negligence. He said they were obviously "caring and responsible parents" but accused them of "willful blindness," pointing out that "Calahan was emaciated to the point where he looked like a starving victim from the Holocaust." He gave them a suspended sentence and three years probation with the stipulation that, during those three years, the probation officer and child welfare must be allowed to visit their home three times a year to observe that the other children are in good health.

Following the verdict, Steve Shippy told the press he still thinks he has the right to withhold medical care from his eight children and said he "wouldn't change a thing."

Pediatrician Seth M. Asser and I conducted the largest study ever done on child fatalities in faith-healing sects and published our results in the April 1998 issue of Pediatrics. We analyzed the deaths which occurred between 1975 and 1995 of 200 U.S. children, who were associated with eighteen different religious sects that object to medical care. We were able to obtain documentation on 172 of these cases sufficient to conclude that medical care was withheld on religious grounds. And of those 172 children, 140 of them would have had a 90 percent or better probability of survival if adequate medical care had been provided in a timely way.

Unexpectedly, our work immediately served as a catalyst for an important new discovery. Shortly after our results were published, public officials in Oregon disclosed to the media that a large number of children from a Followers of Christ congregation near Oregon City had died. Seventy-eight children were found to be buried in a cemetery owned by this church. Another dozen Followers of Christ children died near Caldwell, Idaho, over a twenty-year span.

None of these ninety children was included in our Pediatrics study. In fact, when we did our research we hadn't even heard of the Followers of Christ. Yet these children had been dying year after year, from 1955 through 1998, and nobody outside the group had any real idea.

In the light of this and other information we've acquired since our study, we believe that the numerous deaths across the nation known to us are but a small fraction of the actual total. This may be especially true where coroners have failed to do autopsies in such cases. And the religious groups tend to keep the facts to themselves.

The Christian Science church in particular has admitted to its lack of internal accountability and recordkeeping. Its officials have sworn under oath that the Christian Science church has no "supervisory control" over its practitioners, that it doesn't "ever evaluate a practitioner's judgment about the condition of sick children," that it has no training, workshops, or meetings for practitioners that "include any discussion on how to evaluate the seriousness of a child's condition," that it has never "named the death of a child as a grounds for revoking a practitioner's listing," and that it keeps no records on children who die while receiving Christian Science prayer treatments.

Death isn't the only consequence of religiously motivated medical neglect. Untold numbers more, who grew up in homes with parents who had religious objections to medical care, have suffered needless fear and pain or have become permanently disabled. Illnesses and injuries left untreated can produce a host of outcomes. For example, some CHILD members can trace hearing loss to such neglect. And one became profoundly deaf at age seven after a series of ear infections for which her Christian Science parents wouldn't secure medical treatment.

Thousands of children aren't inoculated against communicable diseases because of their parents' religious objections. The Christian Science church has told its practitioners and nurses not to report contagious diseases to their state and has discouraged them from reporting cases of sick children without medical care to protection services agencies. Though the church does advise parents to report suspected communicable diseases to public health departments, church members aren't likely to "suspect" a communicable disease when their theology teaches them that disease is an illusion, rendering them ignorant of disease symptoms.

Outbreaks of contagious disease in groups with religious objections to medical care are no surprise. An epidemic of polio in 1972 at a Christian Science boarding school in Connecticut left eleven children paralyzed. Health authorities didn't learn of the outbreak until twenty days after the first student became ill. In Philadelphia, Pennsylvania, during February and March 1991, 492 cases of measles, resulting in six deaths, occurred among the children of the Faith Tabernacle Congregation and the First Century Gospel Church.

Contagious diseases can also spread to those outside faith-healing sects. For example, in 1982, nine-year-old Debra Kupsch contracted diphtheria at a Christian Science camp in Colorado, then traveled on a bus with a number of other unvaccinated children to Wisconsin where she died. The state of Wisconsin then had to track down and test all the children and adults she had come into contact with. In 1985, one child whose parents had claimed a religious exemption from state-required immunizations became the index patient for a measles outbreak that ripped through the Blackfeet Indian Reservation near Glacier National Park in Montana, affecting 137 people. In 1994, at the Principia Christian Science parochial schools in the St. Louis, Missouri, area, an outbreak of measles spread to more than 200 children, including many outside the Christian Science community. It was the nation's largest measles outbreak since 1992 and cost St. Louis County taxpayers over $100,000.

Religious freedom, course, is a precious right, but our courts have never ruled that the First Amendment includes a right to deprive a child of preventive, therapeutic, or diagnostic health care. Indeed, they have issued opinions in the opposite direction. Over a half century ago, in 1944, the U. S. Supreme Court ruled in Prince v. Massachusetts:

   The right to practice religion freely does not include 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 before they have reached the age of full and legal
   discretion when they can make that choice for themselves.

Given this clear ruling on the limitations of religious freedom and given the fact that many parents have been prosecuted and convicted for withholding lifesaving medical care on religious grounds, one may wonder what more needs to be done. Unfortunately, state and federal legislatures have given parents religious rights to endanger their children. Consider the following issues.

Exemptions from preventive and diagnostic measures. Right now, forty-eight states have religious exemptions from immunizations; Mississippi and West Virginia are the only ones that require all children to be immunized without exception for religious belief. The majority of states have religious exemptions from metabolic testing of newborns. Such tests detect disorders that will cause mental retardation and other disabilities unless treated.

Sometimes the treatment is simple dietary control until the child's body is able to metabolize protein. Iowa, Minnesota, Colorado, and Michigan have religious exemptions from prophylactic eyedrops for newborns; the eyedrops prevent blindness of infants who have been infected with venereal diseases carried by their mothers. Delaware, Illinois, Kansas, Maine, Massachusetts, New Jersey, and Rhode Island have religious exemptions from screening children for lead poisoning.

California, Colorado, Michigan, Minnesota, and Ohio statutes offer religious exemptions from physical examinations of school children. California, Connecticut, New Jersey, and West Virginia have a religious exemption from hearing tests for newborns. California, Colorado, Massachusetts, Michigan, Minnesota, and Ohio have statutes excusing students with religious objections from even studying about disease in school. And California has a religious exemption from tuberculosis testing of public school teachers.

Exemptions from providing care. Forty-one states have religious exemptions from child abuse or neglect charges. Thirty-one states allow a religious defense to a criminal charge. States with a religious defense to the most serious crimes against children include: Iowa and Ohio, with religious defenses to manslaughter; Delaware and West Virginia, with religious defenses to the murder of a child; and Arkansas, with a religious defense to capital murder. States with a religious defense to child endangerment, criminal abuse or neglect, and cruelty to children include Alabama, Colorado, Delaware, Georgia, Idaho, Indiana, Iowa, Kansas, Louisiana, Maine, Minnesota, Missouri, Nevada, New Hampshire, New Jersey, New York, Ohio, Oklahoma, South Carolina, Tennessee, Texas, Utah, Virginia, West Virginia, and Wisconsin. Florida's religious exemption appears only in the juvenile code but has been ruled a defense to felony abuse charges. States with a religious-exemption-to-nonsupport charge against deadbeat parents include Alaska, California, Idaho, Missouri, and South Dakota.

Several exemption statutes, both in the civil and criminal codes, have ambiguities that may make them merely a statement of one's right to pray rather than a right to withhold necessary medical care from a child. Prosecutors have sometimes filed criminal charges and won convictions under chapters of the code that don't have religious exemptions. Nevertheless, some church officials have continued to advise members that the exemption laws confer the right to withhold medical care no matter how sick the child is and even that the laws were passed because legislators understood prayer to be as effective as medicine.

Federal policy. In response to Christian Science church lobbying, the federal government began requiring states to pass religious exemptions from child abuse and neglect charges in 1974. My husband and I lobbied for several years against this regulation. The federal government rescinded it in 1983.

In 1996, however, Congress enacted a law stating that the federal Child Abuse Prevention and Treatment Act (CAPTA) has no "Federal requirement that a parent or legal guardian provide a child any medical service or treatment against the religious beliefs of the parent or legal guardian." Furthermore, Senator Dan Coats (Republican--Indiana) and Representative Bill Goodling (Republican--Pennsylvania) claimed during debate that parents have a First Amendment right to withhold medical care from children. Therefore, Congress is again encouraging states to pass laws allowing parents to withhold medical care on religious grounds although the exemption laws aren't a federal requirement for grant money as they were between 1974 and 1983.

In 1997 the Christian Science church used the CAPTA religious exemption to promote a bill in Maryland exempting believers in spiritual healing from all civil and criminal charges regardless of the harm to the child. Although the bill was defeated, this action makes it clear that the Christian Science church remains the primary political and legal force behind the agenda of securing special legal privileges for believers in faith healing.

These efforts need to be stopped and the mischief that has already been done to our laws needs to be undone. Enormous challenges lie ahead. In 2001, Congress will reauthorize the federal Child Abuse Prevention and Treatment Act. CAPTA requires that states receiving federal money for child abuse programs have laws requiring parents to provide necessary medical care, but CAPTA also allows these states to enact statutory exemptions for parents with religious objections. I believe that this federal law discriminates against children in faith-healing sects by depriving them of the protections it offers to other children. CHILD will be urging members of Congress to remove the religious exemption.

Why, in the twenty-first century, is this situation allowed to continue? I think it's because the United States remains reluctant to fully acknowledge children as rights-bearing persons. The public and its lawmakers aren't ready to give children a constitutional right to health care. While states do require parents to provide their children with the necessities of life, they don't always require that children receive adequate health care. And every state, at one time or another, has passed laws allowing parents to withhold on religious grounds some forms of medical treatment.

Religious exemption laws create two classes of children. One is entitled to preventive, diagnostic, and therapeutic health care because their parents have a legal duty to provide it. The other--those in faith-healing sects--have no right to immunizations, prophylactic eyedrops, or health screenings and, depending on the reach of the religious defense in the criminal code, no right to medical care for illnesses unless and until a state agency becomes aware of their needs and obtains care by court order.

In our view, religious exemptions from the duties of care are an unconstitutional violation of the rights of children and not a valid act of legislative discretion. Such exemptions discriminate against a class of children, depriving them of their Fourteenth Amendment right to equal protection under the laws, and give a preference and an endorsement to a religious practice, violating the establishment clause of the First Amendment. As mentioned above, the U.S. Supreme Court ruled over fifty years ago in Prince that First Amendment rights to religious freedom don't include depriving children of needed medical care. What is still urgently needed, however, is a federal court ruling that religious exemptions from child health care laws are themselves unconstitutional.

Children aren't property. Their right to life and health should take precedence over their parents' right to practice religion. Parents have every right to pray, of course. Parents have rights to cultural and religious practices that may differ from the prevailing community standards unless they present a specific threat to a child's health or welfare. Parents have rights to privacy in many childrearing decisions beyond the legitimate concern of the state. But parents should also do everything in their power to protect the life and health of their children.

Religions That Have Endangered Children Because of an Official Objection to Medical Care

* Bible Believers' Fellowship

* Christ Assembly

* Christ Miracle Healing Center

* Christian Science

* Church of God Chapel

* Church of God of the Union Assembly

* Church of the First Born

* End Time Ministries

* Faith Assembly

* Faith Tabernacle

* Followers of Christ

* Holiness Church

* Jehovah's Witnesses (only objection today is to blood transfusions)

* Jesus through Jon and Judy

* "No Name" fellowship

* Northeast Kingdom Community Church

* The Source

Rita Swan holds a Ph.D. in English from Vanderbilt University. She is president of Children's Healthcare Is a Legal Duty, Inc. (CHILD), in Sioux City, Iowa (www.childrenshealthcare.org).