A priest who helped transfer a terminally ill 13-month-old from a Canadian hospital – where his breathing tubes were slated to be removed – said the fight to keep the baby alive is a “teaching moment for our whole culture” on the value of life.
Fr. Frank Pavone, who heads the New York-based Priests for Life, told CNA on March 14 it was a “victory for the family” that baby Joseph was moved from an Ontario, Canada medical center to a Catholic hospital in Missouri where doctors plan to perform a temporary procedure to prolong his life later this week.
Joseph's parents – Moe and Sana Maraachli – had asked Priests for Life for help after doctors at London Health Sciences Centre in Ontario refused to transfer the child to a facility that could perform a tracheotomy on him.
The hospital claimed that the procedure – which would allow for the baby to breath on his own – was reserved for patients who needed a breathing machine long term.
Fr. Pavone responded that the treatment is considered by many doctors as a “standard procedure for Joseph's condition.”
Baby Joseph, who suffers from a severe and fatal neurological disorder, was considered to be in a vegetative state by Canadian doctors, who recommended that he have his feeding and breathing tubes removed.
“We and the family felt that they were making a value judgment on his life,” Fr. Pavone said. “It's one thing to say a treatment is worthless – it's another thing to say a life is worthless.”
The baby had been at the Ontario facility since October of last year. His sister, Zina, passed away from a similar condition years ago.
At the hospital in Canada, Joseph's parents “felt trapped in the situation they were in,” Fr. Pavone said.
In response to their pleas for assistance, Priests for Life raised $150,000 to transfer the baby to SSM Cardinal Glennon Children's Medical Center in St. Louis and to pay for subsequent medical tests.
Robert Wilmott, chief of pediatrics at the center, said in a statement Monday that Joseph will likely have a tracheotomy performed by the end of the week to ease his move to a nursing facility.
“The doctors here have been evaluating him and continue to evaluate him and we look forward to the fact that they're going to provide the kind of care that's making the family feel good, feel safe and feel that they're doing the best they can for their child,” Fr. Pavone said from the St. Louis hospital.
In the future, “how it's going to look is going to depend on the next week or week and a half to see what the doctors decide,” he added, saying “a possible outcome” is that the baby would be able to travel back home to Canada with a ventilator.
“Then the parents at least would know that what was reasonable and possible was done and that the baby's life is in God's hands in terms of it's length.”
Fr. Pavone said that far from being in a vegetative state, baby Joseph “moves around – he's not lying there motionless – he reacts.”
“He's a delightful boy – we always have some good laughs when we're together with him in the room.”
The priest called Joseph's parents Moe and Sana, who are Muslim and Catholic respectively, “people of great faith” who “believe in a God who not only answers prayers but is the Lord of life and death.”
“They're very, humble, grateful people,” and are “so happy that others are helping them,” he said.
Fr. Pavone also noted that the family “is very familiar” with the benefits of a tracheotomy, given their prior experience with their daughter Zina, which is “one of the reasons they've been fighting so hard” for the procedure.
He also underscored that the treatment for Joseph should not be considered “extraordinary” in regard to Church teaching on end of life issues.
“In this case, the tracheotomy – as officials have acknowledged – would extend the baby's life,” he said. “Would it cure the underlying condition? No, and the parents are not expecting that it would.”
However, in this situation the question then becomes, “is there anything that can benefit the patient?” Fr. Pavone said, citing his personal need for glasses as an example.
While his glasses are “not curing what's wrong with my vision,” he explained, they are nonetheless “benefiting me.”
The procedure for Joseph, then, involves “ordinary means – something that gives benefit to the patient without unreasonable burden,” he said.
On his interest and involvement with the case, Fr. Pavone said that since the death of Terry Schiavo – a disabled Florida woman whose feeding tube was removed in 2005 despite her family's protests – his organization has “been extra sensitive to ways in which we could advocate for families who are facing situations where medical requests are being denied.”
“Besides the direct help that we could give the family,” Priests for Life saw Joesph's situation as “a teaching moment for our whole culture,” Fr. Pavone said.
“Cases like this are happening all the time but only certain ones become public enough to provide a platform, if you will, for reflection of the whole Church and wider society.”
“And that's what we've been doing with this case – showing people that it's not just about this one baby, it's really about us all.”
The struggle of Joseph and his family during this difficult time “provide a chance for all of us to talk and reflect about these very important issues that effect us all,” and “how we make medical decisions for ourselves and for our loved ones,” Fr. Pavone said.