Friday, May 22, 2009

Religion, parental rights and medicine collide when Minnesota teen with cancer, learning disability refuses chemotherapy

From USA Today:

NEW ULM, Minnesota — The need of states to protect children who are suffering from life-threatening diseases is increasingly colliding with religious choices of parents, including one case where a child has died.

As a Wisconsin woman stood trial May 20 for the death of her daughter, authorities nationwide were searching for a Minnesota mother who vanished with her cancer-stricken 13-year-old son, refusing chemotherapy that doctors say could save his life. The search had turned to Southern California, after authorities received a tip.

Colleen Hauser and her son, Daniel, (pictured) who has Hodgkin's lymphoma, apparently left their southern Minnesota home sometime after a doctor's appointment and court-ordered X-ray on May 18 showed his tumor had grown. The pair had been seen as early as May 19 in Southern California, and authorities believe they were headed to Mexico. Authorities would only say the pair's location was based on reliable information.

Brown County District Judge John Rodenberg, who had ruled last week that Daniel's parents were medically neglecting him, issued an arrest warrant May 19 for Colleen Hauser and ruled her in contempt of court. Rodenberg also ordered that Daniel be placed in foster care and immediately evaluated by a cancer specialist for treatment.

A crime alert said the Hausers might be with Susan Daya, also known as Susan Hamwi, a California attorney who accompanied them to a medical appointment Monday, or with a man named Billy Joe Best.

In 1994, Best — then a 16-year-old — ran away to avoid having more chemotherapy to fight his Hodgkin's disease. He returned after three weeks in Houston when his parents promised they would not force him to have the treatments.

Best has claimed his cancer was cured by natural remedies.

Meanwhile, Leilani Neumann, 41, of Weston, Wis., is on trial on a charge of second-degree homicide for the March 23, 2008, death of her daughter, Madeline Kara Neumann. The 11-year-old died as a result of untreated juvenile diabetes. Dale Neumann's trial is scheduled for July.

In the Minnesota and Wisconsin cases, the families believed religion would save their children.

The Hausers belong to a religious group that believes in "natural" healing methods. Daniel has testified he believed chemotherapy would kill him and told the judge that if anyone tried to force him to take it, "I'd fight it. I'd punch them and I'd kick them."

The Neumann family believed prayer would save their daughter.

Madeline's sister, Elizabeth, 16, testified May 20 that the day before Madeline died she helped her sister to the bathroom and she seemed "cranky but otherwise fine."But she said her sister's condition quickly deteriorated until she couldn't talk or walk and urinated on a couch.

"We were just very confused about all of a sudden she was just very tired and weak, and we didn't understand," Elizabeth testified. "We were very concerned, and we were praying for her. We didn't know what was going on."

In earlier testimony Jennifer Peaslee said she saw Madeline that morning, lying unconscious on a bathroom floor.

"I was in shock," Peaslee said. "I didn't expect to see (Madeline) like that."

She said she knew the parents wouldn't take her to a doctor because they believed the Lord can heal.

Peaslee said she prayed with the family and read Scriptures around the girl and left convinced God was going to heal the child.

A non-profit group called Children's Healthcare Is a Legal Duty is tracking five criminal prosecutions around the U.S., all cases that involve children being denied health care because of religious beliefs. Including the Wisconsin case, there are two cases in Oregon; one case in Tennessee; and one case in Pennsylvania.

Since 1983 the group, which says it works to stop abusive religious and cultural practices, has tracked 66 similar prosecutions.

"It's a small number of children compared to the total problem of child abuse and neglect in this country but they still deserve the right to live," said Rita Swan, the group's executive director.

Swan said in many cases religious exemptions in state law have discouraged prosecutors from filing charges and police from investigating cases.

Wisconsin state Sen. Lena Taylor plans to introduce legislation that would eliminate the state's current exemption. Eric Peterson, Taylor's chief of staff, said the bill will would replace the exemption with an "affirmative defense" mechanism.

That defense could protect parents from being prosecuted if they can prove they provided reasonable medical care.

Swan said only five states —Hawaii, Nebraska, Massachusetts, Maryland and North Carolina— have no religious exemptions for child abuse and neglect in state civil or criminal codes.

"(And) they are hard to prosecute too for other reasons from the law," she said. "These are grief-stricken parents and they can be sympathetic defendants. They love their child and they were doing what they thought was in their child's best interest."

Swan, a former Christian Scientist, lost her son to meningitis, a treatable disease after forgoing medical care in favor of spiritual "treatments" practiced by her church.

"The Christian Science practitioners were pooh-poohing our fears and telling us that our fear was a sin and showed a lack of trust in God and a lack of faith in them, that our fears were causing our baby to be sick," she said.

Swan left the church after her son's death and became an activist on the issue.

Anthony Hauser said in Tuesday's hearing he didn't know where he wife was and that he was disappointed she didn't show up for the hearing.

In Wednesday's editions of the Star Tribune of Minneapolis he said he and his wife had a plan for Tuesday's hearing and he was a "bit disappointed" she didn't follow it.

"We were going to present a treatment plan to the court. If they didn't go with it, we would appeal it," he told the newspaper.

"I know many people around here who have had cancer, they did the chemo, it would come back," Hauser told the newspaper. "They did the chemo again and again and they are all in the grave. Chemo isn't foolproof."

In both cases the children's illnesses are treatable.

Daniel's Hodgkin's lymphoma, diagnosed in January, is considered highly curable with chemotherapy and radiation, but the boy quit chemo after a single treatment.

The judge has said Daniel, who has a learning disability and cannot read, did not understand the risks and benefits of chemotherapy and didn't believe he was ill.

In Wausau, Dr. Michael Stier, a forensic pathologist from the University of Wisconsin-Madison, said Madeline lacked insulin which would have allowed glucose, a simple sugar, to go from her blood to tissue. Instead, the glucose built up in her body, which began to break down fat and produced acid.

The girl began to exhibit symptoms including excessive thirst and frequent urination, according to police reports. Because she had not suffered severe brain swelling, she might have survived had she been taken to a doctor the morning of her death, Stier said.

"This is not an acute event," Stier said. "This didn't happen in minutes or hours. This progressed over days, if not weeks."

Sara Sinal, a professor and physician at Wake Forest University Baptist Medical Center in Winston-Salem, N.C., said preventable deaths are often associated with small sects where the children don't attend public schools.

"There's not a lot of ability for (medical) recognition and intervention," said Sinal, who co-authored an article on Religion and Medical Neglect in the July 2008, Southern Medical Journal.

The Hausers are Roman Catholic and but also believe in the "do no harm" philosophy of the Nemenhah Band, a Missouri-based religious group that believes in natural healing methods advocated by some American Indians. Colleen Hauser testified earlier that she had been treating his cancer with herbal supplements, vitamins, ionized water and other natural alternatives.

The founder of Nemenhah, Philip Cloudpiler Landis, said it was a bad idea for Colleen Hauser to flee with her son. "You don't solve anything by disregarding the order of the judge," Landis said.

The family's doctor, James Joyce, testified by telephone that he examined Daniel on Monday, and that an X-ray showed his tumor had grown to the size it was when he was first diagnosed.

"He had basically gotten back all the trouble he had in January," the doctor said.

Joyce testified that he offered to make appointments for Daniel with oncologists, but the Hausers declined, then left in a rush with lawyer Susan Daya.

"Under Susan Daya's urging, they indicated they had other places to go," Joyce said.

Daya did not immediately respond to a call Tuesday from the Associated Press. The court also tried to reach her during the hearing, but got no answer.

Minnesota statutes require parents to provide necessary medical care for a child, Rodenberg wrote. The statutes say alternative and complementary health care methods aren't enough.