Rita’s AAP acceptance speech

Persistence counts   

         Thank you so much for this wonderful award. I’ve received awards from the South Dakota and Oregon chapters, but never expected to receive one from your national office. It will always be on a wall in our home.   

CHILD President Rita Swan accepts award from AAP President Dr. Bob Block at the Chapter Advocacy Summit 2012.

         Thirty-five years ago my husband and I were devout, lifelong Christian Scientists.  At eight months old our son Matthew suddenly developed a terrible fever.  We retained a Christian Science healer called a practitioner to quote “treat” him.  These folks’ treatments consist of an argument that God is good, God didn’t make disease, and therefore disease is unreal.  I realize that does not sound like a persuasive argument to you folks—you’d all be out of a job if it were true.  But it makes God sound very beautiful.   

         In less than 24 hours our son was back to his normal, vigorous self.  At thirteen and fourteen months, however, he came down with severe fevers again.  Each time we called for Christian Science treatments and each time he recovered, but it would take longer.   

         A month later he had his fourth terrible fever.  Again we relied on Christian Science practitioners.  Matthew did not recover.  Christian Science and the Pentecostal faith-healing sects believe disease is caused by moral or supernatural factors rather than bacteria and viruses.  Disease shows separation from God, fear, doubt, and need for moral regeneration.  So the practitioners made more demands.  They blamed our fear and an argument with my dad.  They presented themselves as authority figures who had handled many cases like our baby’s and told us our quote “false parental thought” was interfering with their work.  We had to expect a healing and be grateful to them in order to get our son healed.  They trivialized his symptoms or reinterpreted them as signs of progress.   

         On the ninth day of his illness we told the practitioner we wanted to go to a doctor.  She pointed out that she could not give Matthew prayer treatments if we did.  The church teaches that medical science and Christian Science are so antithetical that you can’t have both together (except for a handful of very specific exceptions that Mary Baker Eddy found convenient for herself).   

         Even getting a medical diagnosis violates the theology.  Medical information just makes it harder to get a Christian Science healing, which involves persuading the patient or his parents that God is the only power and therefore the disease is unreal.  We had no rational information to make a decision with.  In that vacuum of ignorance, it seemed safer to stick with what we knew.   

         On the 12th day of his illness, however, the practitioner said Matthew might have a broken bone and Christian Science allows you to go to a doctor for setting broken bones.  Suddenly there was a way we could get medical care and also have her prayer treatments for our baby.  We immediately drove to a hospital where the disease was diagnosed as h-flu meningitis.  Emergency neurosurgery was done; Matthew lived for a week and then died.  The Christian Science practitioners refused to pray for him in the hospital, first because he was getting drugs and later because he was on a respirator.   

         We left Christian Science right after his death, and our interaction with providers in the hospital was very instrumental in getting us out.  They were compassionate to us, they encouraged us to participate in Matthew’s care, and they were educators.  They explained meningitis to us and how it had caused the symptoms we had seen.  From that we could understand that signs that the practitioners and we had believed were signs of progress were really signs of disaster.  We could see that Christian Science had accomplished nothing.   

         When I walked in to the hospital with a nearly dead baby in my arms, a doctor came up and said, “How long has this child been like this—not responding?”  I was shocked.  “How can life be that simple?,” I thought—“a child is sick and you do something about it.”  For twelve days we had been cringing with guilt for our fears and sins that were supposedly causing our baby to be sick.  I was also impressed that within a minute six nurses were surrounding Matthew.  For three days we had been trying to get a Christian Scientist called a nurse to come out and help care for Matthew, though the church’s nurses are unlicensed and have no medical training.  She still hadn’t arrived.  When I saw all those nurses in the hospital rush around Matthew, I thought, “These are the people who take disease seriously.”   

         A young resident, Dr. Sharon Knepfler, also made a deep impression on us.  She said she had reserved a room for us right next to the operating room and our Christian Science practitioner could come and be with us and pray for the baby.  Through the evening she came back and looked in on us alone in a waiting room.  She finally realized that no Christian Science practitioner was coming to that hospital and it blew her mind that our church would desert us after we had paid such a heavy price for our faith.  A little later she back another time and said softly, “I know something else I could do for you.  We have a priest who knows about all the different religions.  Would you like him to be with you?”  We accepted though Christian Science is very anti-Catholic.   

         Though our church had deserted us when we took Matthew to the hospital, it tried to prevent us from leaving the church.  Church members called us repeatedly saying we were too confused and stressed to make that decision.  They said we would be at the doctor’s office every day if we left.   

         We were also told that one of Matthew’s practitioners had healed a little boy of meningitis in the next suburb.  I had to know whether that was true.  Maybe Christian Science was a scientific system for healing everything.  Maybe it would have healed Matthew if only we had been purer.  So I called the church in that town and a week later the boy’s mother called me.  Her little boy was 17 years old.  Because his dad was not a Christian Scientist he eventually insisted that the boy get medical care.  He was diagnosed with viral meningitis.  In the hospital he was put in a dark room and fed glucose but given no medication.  The mom is convinced it was the CS practitioner’s prayers that healed him.   

         I thanked her for sharing her story and hung up, but was confused.  She made no mention of antibiotics yet doctors had told us antibiotics were the necessary treatment.  So I went to a university medical library and looked at pediatrics textbooks.  I of course could not comprehend much, but finally did figure out that there were two kinds of meningitis—the viral which can often run its course without needing medication and the bacterial which would usually be fatal without antibiotics.   

         I was so relieved that I sat on the floor of the library stacks reading that section over and over.  I did not have to be afraid that Matthew had died because we were not right with God or that we would deprive ourselves of a magical healing system by leaving the church.  I knew we were out of Christian Science forever.   

         We founded the organization Children’s Healthcare Is a Legal Duty or CHILD, which works to stop child abuse and neglect related to religious beliefs, cultural traditions, and quackery.  We oppose all religious exemptions from child health and safety laws.  The state should not deprive one group of children of protections that the state extends to others.   

         Furthermore, these religious exemptions give parents the impression that it is not only legal but safe to rely exclusively on ritual.  The Christian Science church, in particular, claims to have a health care system, calling its faith healers practitioners, their prayers treatments, and the people they pray for patients.  The practitioners bill for these treatments, and the church constantly seeks third-party reimbursement of these bills. They also have unlicensed nurses with no medical training whose care in Christian Science sanatoria is reimbursed by Medicare and Medicaid.    

         The American Academy of Pediatrics has been an important friend from the very beginning of our child advocacy work.  I began calling agencies, pouring out my story, and asking for guidance.  A pediatrician suggested I write the Academy.  “If they say there’s nothing that can be done, then there’s nothing that can be done,” he said.  Fortunately, Dr. Jean Lockhart replied to my letter and gave me hope.   

         Jean and I presented to the bioethics committee, resulting in the Academy’s first policy statement on religious exemption laws.  Jean also presented to the AMA, which eventually adopted a policy against religious exemptions.   

         The Academy has signed on to some of our amicus briefs and also wrote one in support of our initiatives.  You have lobbied in Congress for the rights of this little group of children in faith-healing sects.  Most recently the Academy and CHILD got provisions dropped from the federal health care reform bills that would have required insurance companies to reimburse bills that Christian Science practitioners send for their prayers.          

         Working in alliance with state organizations, including the state pediatrics chapters of course, we have gotten religious exemptions repealed or weakened in about a dozen states.  It has been an almost comically low-budget effort.  Our organization has never had more than $45,000 in annual income.    

         I remember one year I made nine trips down to the capitol in Des Moines 200 miles away.  I would ride down on Sunday with a legislator, trudge up the big hill through ice and snow to the capitol day after day, and then catch a slow overnight bus home.  My husband would meet me at the bus depot at 6 a.m. to take me home.   

         I’ve been asked to talk about our Oregon work and it is a joy to do so.  Through the 1980s and 1990s Oregon steadily became the worst state in the nation for religious exemptions.  Legis­lators and, frankly, organizations that should have known better such as the Oregon District Attorneys Association, gave the Christian Science church everything it asked for.  By 1997 Oregon had reli­gious defenses to murder by abuse or neglect, man­slaughter, criminal mistreatment, criminal non-support and neglect.   

         Perhaps most shocking was the murder statute allowing those who care for a child “solely by spiri­tual means” to cause a child’s death “recklessly under circumstances manifesting extreme indiffer­ence to the value of human life” by “failure to pro­vide adequate. . . medical care.”  Oregon Revised Statutes 163.115   

         Oregon also had a great many preventable deaths of children among churches objecting to medical care.  Several public officials in Clackamas County where a faith-healing church, the Followers of Christ, was located seemed indifferent to the deaths of sect children.  A longtime coroner later told the press he couldn’t remember a death he quote “got excited about” or whether he referred any deaths to the district attorney.   

         Later when a state medical examiner’s office was created, it did take the deaths seriously and did meticulous forensic investigations of them for the district attorney.  But the district attorney said the exemptions gave religious objectors the right to let their children die without medical care.   

         In January, 1998, I spoke at a national child abuse conference.  The new Clackamas County district attorney came up after­wards and told me about Followers’ children dying without medical care.  She wanted to do something to stop them.  A few weeks later an 11-year-old boy in the church died of untreated diabetes in her county.   

         She announced that Oregon’s religious defenses prevented her from filing any charges, but she did alert the press, which went to the cemetery owned by the Followers church and found 78 children buried there.    

         That year also, a pediatrician and I published the largest study of child mortality in faith-healing sects.  Our Pediatrics article reported on 172 deaths of U.S. children over 21 years.  We found that 140 would have had at least a 90% likelihood of survival with timely medical care.  The group included 28 Christian Science children, but no Followers of Christ children because we had not heard of the sect when we did our research.   

         Those 172 are just the cases that came to our attention before the days of internet searches and that we could gather enough information on to include in the study.  There is certainly no way to retrieve the total number nationwide.   

         An Oregon CHILD member asked his state legislators to sponsor a bill repealing the exemptions and freshman Republican Bruce Starr agreed to do so.   

         Then the Christian Scientists entered—well-dressed, professionals, and constantly besieging legislators.  What do legislators do when two groups take strong, passionate, opposing positions on a bill?   

         Split the difference.  So the first committee passed a bill that repealed 6 of the 9 religious exemptions we were trying to repeal.  Before the bill got to the floor, the committee chair had decided to invert the order, repealing the other three and keeping the six.   

         In the Senate the chair of the Judiciary Committee set up a work group on the House bill and invited the Christian Science church to send attorneys to it.  The work group met in secret and the names of non-legislators present were not put in the public record.   

         Not surprisingly, the bill that came out of the work group and passed the committee was strongly tilted to the Christian Science church.  It repealed a different three religious exemptions and changed the duty of parents from providing “medical care” to providing quote “health care” because the church claims its spiritual methods are “health care.”   

         For all the work group’s concessions, however, the church went behind their backs afterwards and urged other Senators to vote against that bill.   

         Meanwhile over in the House, our allies became concerned that the Senate would never pass the bill and it would die.  So they attached yet another version—repealing five religious exemptions—on to a bill protecting dogs and cats from fur traders.   

         The Senate sponsor of the dog and cat fur bill was angry, but it got the ball moving, and we finally got a bill to the Governor repealing five of the nine religious exemptions and leaving the standard of care at “medical care” rather than “health care.”  During this 7-month struggle in the legislature, about 75 amendments were proposed and many were attempts to pacify the Christian Science church’s shifting positions.   

         I made four trips to Oregon that year to work for the bill.   

         We hoped that the compromise bill would be enough to persuade the Followers to change their behavior and for many years it seemed that it had.  But in 2008 and 2009 three Followers children died without medical care, and in 2010 a fourth was permanently harmed by medical neglect.   

All religious exemptions from care of sick children repealed in 2011   

         We asked Bruce Starr whether he would carry another bill to repeal the remaining four religious exemptions from providing medical care for sick children.  Again he was willing.   

         My husband Doug and I wanted to make it easier for him.  We felt if we could be in Salem for a few months, if we could be at the State Capitol every day to present the case for equal protection of children, we could stop the Christian Scientists’ obfuscations from gaining traction with legislators.   

         We found a college student to live in our Iowa home, bought studded snow tires for crossing the Rockies, boxed up 250 pounds of stuff to ship by truck, and loaded the rest of our necessities in the car, leaving our Labrador retriever Boomer just enough room to lie down on the back seat.  We lived in Salem for four months.   

         Some commentators had predicted that the Oregon legislature would not be able to get much of anything done because the House was evenly split between 30 Democrats and 30 Republicans.  The Senate had 16 Democrats and 14 Republicans.    

         We had wonderful success, however.  We got supporters from different parts of the state to be honorary members of CHILD’s newly-formed Oregon chapter and printed stationery with their names on it.  We met with every legislator on the committees where the bill was.  We got nine organizations, both liberal and conservative, to endorse the bill.  We testified in committee hearings.   

         To our surprise, the Christian Science church quickly gave up.  The church sent a letter to legislators saying it would not oppose the bill because the deaths of children in Oregon were “tragic” and have quote “reached critical mass.”  When we lobbied for repeal of these religious exemptions in 1999, when there were 78 children buried in the Followers of Christ cemetery, the Christian Science church fought us tooth and nail.  But in 2011 when there were, to my knowledge, 83 children buried there, the deaths had reached critical mass.   

         The church also made sure that they were not promising a change of heart in other states.  It wrote that quote “the situation in Oregon is unique.”   

         The bill passed the Oregon House unanimously—yes, that House with 30 Democrats and 30 Republicans.  The Senate made it an emergency bill to take effect the day after the Governor signed it.   

         Oregon is now one of six states with absolutely no religious exemptions pertaining to medical care of sick children.   

         The states where we now believe similar repeal work is most urgently needed are Oklahoma and Idaho.  They both have had recent deaths and have bad laws.   

         Again, we thank the AAP for caring about the children in faith-healing sects and working for policies that give children the equal protection of the law.

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