It has been more than two years now.
Still, Doug and Rita Swan are living through "that awful nightmare." They are consumed by it. Consumed by guilt, and consumed by the tragedy of a faith shattered and a young child's death.
Two years ago, in 1977, Doug Swan was teaching math at the Detroit Institute of Technology. Rita Swan was a part-time English instructor at Wayne State University and Wayne County Community College. They lived in suburban Grosse Pointe Park. They had two children, 8-year-old Cathy and 16-month-old Matthew.
And, they had religion -- Christian Science -- a religion they had both known and practiced since childhood. On Sundays they taught Sunday school.
When Matthew Swan died of spinal meningitis at 1 a.m., July 7, 1977, Rita and Doug Swan were shattered. They blamed themselves and their religion for their son's death. And they have refused to grieve quietly.
For 12 days, fevered and lying in a near-coma much of the time, Matthew Swan was kept at home after he fell ill on Father's Day weekend.
Following their Christian Science beliefs, the Swans did not seek medical help. Prayer, faith and knowledge were to heal Matthew. A Christian Science practitioner -- a person sanctioned by the church to assist in healing through prayer -- was called. Prayers were offered. Matthew remained ill.
Finally, torn by fear and doubt, and realizing they were rejecting a faith long held dear, the Swans rushed their dying son to the hospital. It was too late.
Despite emergency surgery and the life-prolonging use of a respirator, Matthew Swan died within a week.
And now Rita and Doug Swan are haunted. And angry. And still filled with anguish. They are certain their son could have been saved.
"I will always feel that guild," Rita Swan said. "Matthew's death was not right. He was a beautiful child. He had infinite potential. It was a massive injustice that happened to him, and secondarily to us."
The Swans have spent two years working through their guilt, their massive anger. Even after a more last year to Jamestown, N.D., where they both are instructors at Jamestown College, Rita Swan continues to write and rewrite a painfully emotional, 50-page account of Matthew's final days.
In December, the Swans exhibited those painful emotions and their concern about children's rights and the Christian Science church on "The Phil Donahue Show." And they have a Detroit lawyer researching the possibilities for state legislation to protect the rights of a child caught in what one person called "a religious Catch-22."
"We were both very involved in the church," said Doug Swan. "We were Sunday school teachers, we were officers, we wrote religious articles. We had relied on Christian Science exclusively as a means of healing. If you believe in a religion, you follow it."
"Christian Science," said Rita Swan, "was wrapped up with my security, my marriage, my family, my happiness."
She felt close to the practitioners, she said, because "they were like surrogate mothers."
So when her son suddenly became ill and tormented by fever, the choice was simple. Rita Swan called her other mother, the practitioner.
In fact, during those 12 days of misery and indecision, the Swans solicited the help of two practitioners, who in this story will be called Dorothy Miller and Susan Jamison.
"I went over a couple of times to pray for the healing (of Matthew) but then I was summarily dismissed," Mrs. Miller said. "I don't mean to be indicting some other practitioner, but if I had stayed on the case and seen the the child didn't appear to be responding to prayerful treatments, I would have asked for a nurse, and I certainly would have notified the Committee on Publication."
The Christian Science Committee on Publication, a committee of one, is Dean Joki. A resident of nearby Grosse Pointe, he is the official spokesman for the church in the state of Michigan.
Joki acknowledged that he was not contacted about Matthew Swan's case until Matthew was dead.
"The practitioner, under the church's 'Legal Rights and Obligations' booklet, is supposed to follow whatever the state law is," Joki said. "State law doesn't allow, and we don't allow, the practitioner to make a diagnosis. But they are supposed to report a communicable disease if they discover it. A nurse can also be called in."
Meningitis in certain forms, is communicable. Even the suspicion that an illness might be communicable should be reported, health officials said.
All forms of meningitis must be reported.
The manual, "Legal Rights and Obligations of Christian Scientists in Michigan," clearly states that meningitis is one of the diseases that must be reported quickly to health officials.
What is not made clear is who must do the reporting. The church's legal rights and obligations manual states that it is "preferable" for the patient or parent (if the patient is a child) -- rather than the practitioner -- to do the reporting. But it also states: "Although there is no legal requirement that a Christian Science practitioner make a report, there is, however, a moral obligation to see that the law is obeyed."
Typically, health officials said, the person serving as the health provider -- be it a physician or a practitioner or a nurse -- is the person who reports the disease.
Under Michigan law, failure to report a disease is a misdemeanor. The maximum penalty is a $200 fine and six months in jail.
"But if we don't hear about the failure to report," said a health department official, "we can't do anything about it."
No one heard about it.
No one heard because the health provider, a Christian Science practitioner, did not report Matthew Swan's disease. Nor did the parents. The Swans put their trust in their practitioner.
"At one point," said Rita Swan, "she (the practitioner) tried to tell me that Matthew was probably just cutting new teeth."
Rita Swan denied that Dorothy Miller was dismissed. Filled with anxiety and fear, she said, she was grabbing for any possible shred of hope. Therefore, new prayers and a new practitioner were sought to try to bring relief to Matthew.
But the baby, by now hemorrhaging behind the eyes and suffering severe spinal pain, did not respond to Susan Jamison's prayers.
"She called me and said they weren't getting any results with the first practitioner," Mrs. Jamison said. "I helped them for a few days, but without my knowledge, they went to a hospital. That was the end of it. We don't help people once they go to a doctor. We aren't permitted to. The Swans know that."
At one point during the Swans' ordeal, a Christian Science nurse did pay a brief visit.
"What she discovered," said Joki, refusing to reveal the nurse's name, "was that the child was improperly cared for in the home. She said the child was not covered and was not kept warm and that the home was in a state of confusion."
Of course there was confusion, Rita Swan said. But improper care? She bitterly resents the accusation.
"The nurse told me that Mary Baker Eddy said that fever is caused by fear, and that therefore my fears were causing Matthew's fever," Mrs. Swan said. "And then she said she thought I was doing everything right. She never said anything about reporting Matthew's condition to anyone else . . . It was a very desperate situation. That should have been obvious to anyone."
So why didn't Rita and Doug Swan take matters -- and a dying baby -- into their own hands sooner?
That is exactly what they should have done, Dean Joki said.
"If they want to go to a hospital, then they should," Joki said. "We do not exercise any ecclesistical control or coercion. They have to make that decision. Christian Science teaches that it is the individual who must make the choice."
But what of the guilt one might feel upon abandoning his faith and beliefs for the emergency room?
"I certainly don't feel I could comment on that," Joki said. "But there can't be any guild that is administered by the church . . . One of the things that seemed to irritate the Swans, the most was that after they went to the hospital, the practitioners would not pray for their child. What the Swans should realize is that if you're going to rely on Christian Science , you have to go all the way."
Matthew Swan was comatose upon arrival at the hospital.
The disgnosis was a brain abscess, a complication of meningitis. The meningitis, said Dr. Sharon Knefler, who helped in the treatment of Matthew, was caused by Hemophilus influenzae, a bacterial form of the disease.
"It's the most common cause of menigitis in children after two months of age." Dr Knefler said. "It accounts for about 60 percent of all cases. Is it treatable? Yes, it's treatable."
If Matthew Swan has been brought to a hospital as soon as he felt ill, Dr. Knefler said, his life probably could have been saved.
That knowledge gnaws at Rita and Doug Swan. Matthew Swan could be -- should be -- alive today, the Swans say. They have left Christian Science. sThey attend a Methodist church in North Dakota. They have a new daughter, Marsha, 14 months. They have a family doctor.
Paul Rentenbach, of Dykema, Gossett, Spencer, Goodnow and Trigg, is the Swan's Detroit attorney. "I think this case goes beyond the free exercise of religion when you're dealing with infants and children," Rentenbach said.
The Swans would like to change state law, Rentenbach said, to insure that future children will be protected.
The Michigan Child Protection Act, a law similar to those in 35 other states and a law that was heavily, lobbied for by the Christian Science church several years ago, protects a parent who, while practicing his religious beliefs, does not provide specified medical treatment for a child. The parent cannot be found negligent or prosecuted for manslaughter.
The Swans would like to change the law, Rentenbach said, so that, "Where there is a child involved in an illnss and no MD attending, that the practitioner, whether they're Christian Science, or not, and the parents are under no obligation to have a doctor see the child . . . The right of the child in those cases supersedes the freedom of religon."
The Swans, the cynical might say, are asking the state to protect them from themselves. And from their chosen religion.
Such a change in the law would violate the freedom of religion, Dean Joki said.
And besides, Matthew Swan was a clear case of the "tragic exception," he said. "Christian Science's success rate with children is terrifically high. I know families where there are three or four generations of children who never went to a physician."
The Swans, Joki said, "certainly deserve our compassion. We in no way feel they were irresponsible. They are not our enemies."
Rita Swan is not so sure. She is saddled with a double guilt.
After Matthew was born in March 1976, Rita Swan was told she had a dangerous ovarian cyst. She was told it must be operated on.
When the pain became unbearable that fall, she had the operation. She went against her beliefs. She was told she must step down from her teaching duties in the church for several months as a disciplinary measure.
"I think when Matthew got sick," a friend said, "that Rita really wanted to demonstrate how good she was religiously. She wanted to show them that she was still a good Christian Scientist. So she went along with the practitioners."
"Yes, that's probably true," Rita Swan said sadly. "There are extreme pressures on a Christian Scientist to stick with the faith. You feel stigmatized if you don't.
"There are many reasons I did go back in the months before Matthew got sick. I was extremely insecure. I was very dependent on that particular world. I just didn't know how to get out of the church. I had the feeling, 'I've broken the rules once. If I break them again, I won't have any Christian Science left at all."
Dorothy Miller, the practitioner, doesn't understand that sort of sorry dependency. Christian Scientists are taught to be independent, she said.
"Legally, a parent can have any kind of care they want for a child," she said. "I don't try to tell a parent to do one thing or another. But I've seen many wondeful things work out in Christian Science."