Toddler’s imminent death seems medically inevitable. But his parents fought doctors’ efforts to remove breathing tube so he could spend final days at home
Moe Maraachli and his wife, Sana Nader, were at a rest stop on their way home from Toronto in October when they noticed that their son Joseph was having a difficult time breathing. The infant ended up in the Victorian Hospital of the London Health Sciences Center in London, Ontario, and within months, his life — and the imminence of his death — became the focus of international attention.
He is known as Baby Joseph, and the issue is not whether he will recover. He won’t.
“Our intentions in this case were not based on the predictions of the outcome, and we weren’t intervening for any extraordinary means of treatment,” said Father Frank Pavone, national director of Priests For Life, who helped arrange for the baby’s transfer to SSM Cardinal Glennon Children’s Medical Center in St. Louis. “We are simply saying that no one can say that this life is not worth living.”
Baby Joseph is now at home in Ontario, and that’s all that his parents wanted for him.
“I know he is sick, and we understand that [his condition] is critical,” his father told Our Sunday Visitor. “Then the situation is between him and God.”
Baby Joseph, born on Feb. 22, 2010, has a rare, progressive neurological disease. A team of doctors, including pediatric neurologists, had ordered MRIs, brain scans and other tests on the baby and concluded that there was no chance of recovery. The attending physicians said that he was in a vegetative state and recommended removing the breathing tube that kept his airway clear of obstructions.
His parents feared that removing the tube would cause the baby to choke to death.
“We did not want our baby to die this way,” Maraachli said. “We asked about a tracheotomy to keep the airway clear, and we wanted to take him home and care for him.”
Surgeons perform a tracheotomy by cutting an opening in the windpipe (trachea) and inserting a tube to bypass an obstruction or to enable the removal of secretions.
The couple, who have a 7-year-old son, Ali, lost their 18-month-old daughter to another neurological disorder nine years ago. She had received a tracheotomy that enabled her to live at home for six months, and to die peacefully in her parents’ arms.
When the doctors would not agree to perform a tracheotomy on Baby Joseph, the parents’ legal battle played out in the global media.
The parents were asked for consent to remove the breathing tube, but they refused. In January, they took the case before the Consent and Capacity Board of Ontario, an independent provincial body that addresses matters relevant to the Health Care Consent Act.
The board agreed with the doctors, and the breathing tube was scheduled to be removed on Jan. 28.
With hours to go before the deadline, the parents filed an appeal through Legal Aid that bought them more time. However, in mid-February they lost their appeal in Superior Court and were ordered to comply with the doctors’ orders and to the earlier tribunal decision forcing them to consent to removing the tube.
In a public statement, hospital officials clarified that they were willing to send Baby Joseph home to die in his parents’ arms, as the parents requested. But the hospital’s plan was to discharge him to home with a medical team, place him in his parents’ arms, then remove the breathing tube.
The family sought a second opinion from Children’s Hospital of Michigan in Detroit, and the hospital in London agreed to forward medical information. But for an undisclosed reason, that transfer never took place.
Time running out
Members of two Catholic organizations were keeping track of the case. Karl J. Schmitz, assistant to the Mary’s Helpers Inc. healing ministry of Father Glenn Fontana of Peoria, Ill., got in touch with Maraachli through the Internet, and Father Fontana offered to visit Baby Joseph if and when he came to the United States.
In New York City, staff members of Priests for Life were keeping Father Pavone updated about the case.
“Time was running out for Baby Joseph, and we put the word out for, please, somebody [to] come forward and help,” he said.
Dr. Paul Byrne, who had worked at Cardinal Glennon Medical Center, helped make a connection, and on March 13 Kalitta MedFlight of Ypsilanti, Mich., provided an air ambulance. Father Pavone was onboard with Maraachli and a team of flight nurses when Baby Joseph was transported to St. Louis.
A multidisciplinary medical team of specialists at the Catholic hospital, along with the hospital’s ethics committee and the parents, concluded that a tracheotomy was medically appropriate. It was performed on March 21.
Four days later, Father Fontana came to the hospital and invoked “nine choirs of angels before the throne of the Eternal Father,” the Immaculate Heart of Mary, the Holy Spirit “and Jesus the Divine Healer” as he prayed over the baby.
Doctors expected Baby Joseph to need additional care in a nursing facility, but he was doing so well that he was discharged directly to home on April 21. He is now under the care of his parents, with assistance from visiting health care staff.
Maraachli and his wife take turns tending to their baby, and Ali stays at his bedside, too. According to Maraachli, Baby Joseph responds to their voices and to their touch, and exhibits physical signs of crying.
“I can see his lips trembling and tears coming from his eyes, and his face is red, like any baby, but he cannot make sounds because of the tracheotomy,” he said.
The family has received support from tens of thousands of people in Canada, the United States and abroad. But their case is not without controversy.
“Some people get angry at me because I saved my baby,” Maraachli said. “They don’t understand. We love him, and we care about our baby.”
Maraachli and his wife are from Lebanon. He is a Muslim and she is a Catholic, and Baby Joseph was baptized while he was in St. Louis.
“Their faith led them not into denial, but to trust in whatever God’s will is for this child,” Father Pavone said. “They want to have Baby Joseph for however long they can have him, and they want to love him as best as they can.”
Maryann Gogniat Eidemiller writes from Pennsylvania.
Father Frank Pavone of Priests for Life said the Baby Joseph story is “a beautiful lesson of parents who don’t measure their joy in their child in the meaning of his life,” or by the days, months or years.
“It is measured by the love they share between them and, of course, the love from God,” he said. “Sometimes people will say that the baby was going to die anyway, and I say, ‘Aren’t we all?’ That’s part of our Christian journey, and that doesn’t take away the love and care that we are to give each other in whatever time we have.”
On the net
Priests for Life, which is helping pay Baby Joseph’s medical bills, has set up an informational webpage at babyjosephcentral.com.