St. Louis hospital agrees to operate on terminally ill baby from Canada

From the St. Louis Post-Dispatch:

A St. Louis hospital has agreed to operate on a terminally ill baby from Canada whose case has fueled the latest controversy over end-of-life medical care.

Joseph Maraachli was airlifted from London, Ontario, and arrived at Cardinal Glennon Children's Medical Center about midnight March 14. The 13-month-old had been at the London Health Sciences Centre since October, where doctors said his neurological condition was fatal and progressive.

Joseph's parents refused the Canadian doctors' plan to take the baby off a ventilator and feeding tube and allow him to die. The parents want Joseph to receive a throat surgery to open his airway and connect him to a portable breathing machine. Doctors at Cardinal Glennon say they will probably perform a tracheotomy surgery on Joseph this week and that the baby will then be moved to a skilled nursing home in Detroit, which is near the family's home in Ontario.

"We are pleased to be able to assist the family in this very challenging time," Dr. Robert Wilmott, chief of pediatrics at Cardinal Glennon, said in a statement Monday.

A Canadian health care panel earlier agreed with the Ontario hospital that the surgery would be futile and put the baby at risk of infection and other complications while extending his life only a few months.

The baby's family appealed the decision and looked for another hospital to care for Joseph. Children's Hospital of Michigan and at least a dozen other U.S. hospitals declined to accept the baby's transfer.

Cardinal Glennon staff thought "we could at least provide this family with a second opinion, so that's what we agreed to do," said Bob Davidson, a hospital spokesman.

The anti-abortion group Priests for Life agreed to pay for the transfer and Joseph's medical treatment at the Catholic hospital.

"St. Louis stepped up to the plate. ... A lot of people don't want to be in the center of a big controversy," said the New York-based group's director, the Rev. Frank Pavone. "Cardinal Glennon hospital approached this with really a fabulous attitude, with a focus on the child and a fresh diagnosis to give the family the second opinion that they want."

Pavone traveled to St. Louis with Joseph and his father, Moe Maraachli. The baby's mother, Sana Nader, and 7-year-old brother also are planning to come, Pavone said.

Pavone was closely involved in the case of Terri Schiavo, the Florida woman who died six years ago after her feeding tube was removed after a prolonged battle between her husband and parents.

Both cases raise questions about how to treat the most vulnerable patients, Pavone said. What happens to Joseph will "ultimately shape our decisions about our own loved ones and ourselves. ... What's the judgment we make about the value of a person?"

Joseph interacted with the priest Monday by holding his hand and responding to touch, Pavone said. Priests for Life released a video showing Joseph moving in his bed and said hospital officials were happy that Joseph was breathing mostly on his own.

Cardinal Glennon officials said they were "puzzled" by those claims and said Joseph remained on a ventilator.

Joseph was born Jan. 22, 2010, and experienced withdrawal from painkillers given to his mother during her pregnancy. The baby initially developed normally, but doctors watched him closely because his older sister died in infancy from a severe neurodegenerative disorder similar to Joseph's, according to records from the Ontario Consent and Capacity Board, the independent health care panel that ruled in Joseph's case.

By May, the baby started having seizures. He was treated at Michigan Children's Hospital where a brain scan showed the degeneration of cells. The baby had severe difficulty swallowing, and a feeding tube was inserted.

In October, Joseph was taken to the Canadian hospital after he stopped breathing. He then was placed on a ventilator and was diagnosed with severe and irreversible brain damage. Attempts to remove Joseph from his breathing tube were unsuccessful.

A second opinion from doctors at the Hospital for Sick Children in Toronto agreed that a tracheotomy would not improve Joseph's condition, according to the panel's records.

"While we felt a great deal of empathy for the parents, we held that their view was not in any way realistic," reads the panel's January decision. "After three months in hospital hooked up to tubes and machines, after suffering from the invasion of personal privacy, after suffering human indignities, and with the exacerbated difficulties that would arise because of the tracheostomy, it was time for the parents to say 'enough.'"

The parents said they understood there were no treatment options for Joseph, but they wanted the same time with him that they had with their daughter, according to the panel's report.

The baby girl, who died nine years ago, spent five months at home after receiving a tracheotomy. After the surgery, the infant caught pneumonia and had to go back to the hospital several times.

Doctors in Joseph's case said they believed a tracheotomy would delay his death but not improve his well-being. They had instead agreed to help transfer Joseph home, where they would remove his breathing tube as his parents held him.

A Chicago pediatrician who studies medical ethics said that sometimes a family's decision on treatment was appropriate even if it did not provide a cure for a child.

The pediatrician, Dr. Melanie Brown of the comfort team at the University of Chicago Comer Children's Hospital, said that it was easy to judge the decisions of the family and the hospital but that each case was different.

"It pulls at all of our heartstrings when we see a baby who might be suffering," Brown said. "There may be times where there are things we do so a child can live out the type of life that a family wants for them."