ST. LOUIS -- A video just released by Priests for Life shows Father Frank Pavone, national director, interacting with Baby Joseph Maraachli in his hospital room at SSM Cardinal Glennon Children's Medical Center here. The video shows the baby moving his hands and rolling in his bed. The hospital in Ontario, Canada, where he had been a patient since October, declared that the baby was in a persistent vegetative state, but doctors at Cardinal Glennon have told Father Pavone that he is primarily breathing on his own and is responding to touch. "Hospital officials were very, very happy," Father Pavone said today.
Baby Joseph Maraachli, the 14-month-old Canadian infant who was denied the medical procedure in his country, will get a tracheotomy either today or tomorrow that will allow the child to live another 6 months.
Joseph was rescued late Sunday from the Canadian hospital by Father Frank Pavone of Priests for Life, who paid for a private specialized medical plane to take the boy to SSM Cardinal Glennon Children’s Medical Center in St. Louis, Missouri so he could have the medical procedure before his parents take him home, where he will likely die soon from a degenerative neurological condition.
A team of specialists at the Catholic hospital have evaluated Joseph, who was “in serious but stable condition,” on arrival from London, Ontario Health Sciences Centre. In a statement released earlier this week, Dr. Robert Wilmott, Cardinal Glennon Hospital’s chief of pediatrics, said Joseph “likely will have a tracheotomy performed by the end of this week to facilitate his transition to a skilled nursing facility.”
His parents want the tracheotomy done so he can die at home with his parents and family rather than at a hospital. Dr. Robert Wilmott, Cardinal Glennon Hospital’s chief of pediatrics, said Joseph “likely will have a tracheotomy performed by the end of this week to facilitate his transition to a skilled nursing facility.”
The terminally ill child is expected to get the procedure done either today or tomorrow and Moe Maraachli, Joseph’s father, told the St. Louis Post-Dispatch he just wants to take his son home “and let him breathe.”
“Let me take him home and let him breathe. If he will die, he will die because he’s sick, naturally,” he said. “I fight for him because that’s my job for my son. He’s never given up, because I’ve never given up.”
Meanwhile, Moe says he plans to catalog the events of what has happened with Jospeh for a potential book that can help other parents of disabled children learn how they can fight for proper medical care and treatment for their little ones.
Pavone talked about the rationale behind helping the infant.
“We’re not saying that people should be kept alive at any cost. Nor are we saying that there’s any specific treatment plan here that we’re imposing,” Pavone said. “What we’re saying is ‘Give the baby reasonable care and listen to the parents who want to give the baby a second chance in an American hospital.”
The family of Terri Schiavo understands the plight of a patient denied medical care and Terri’s brother Bobby Schindler has been helping Joseph’s parents get him to the United States from Canada. He applauded the rescue and is glad Joseph will be receiving proper care.
“This is a great victory for Baby Joseph, his family and for all the people and organizations that were committed to helping this precious child,” he said. “I’m just delighted that a groundswell of support began once we met with the family in Canada, and thankfully, Priests for Life followed with their help. Not only is this significant for this child but for all the medically dependent whose lives are at risk of health care rationing.”
Schindler added: “Baby Joseph was hours from being pulled off life support at LHSC before his situation made national headlines, forcing the hospital to cease its efforts to end the baby’s life. Fortunately, through the advocacy of various organizations and countless people, Baby Joseph was transferred to SSM Cardinal Glennon Children’s Medical Center in St. Louis.”
Joseph has been at London Health Sciences Centre in London, Ontario, since October with a rare deteriorating condition that is not improving. The doctors who have cared for him want to remove his breathing tube but Moe Maraachli and Sana Nader took their battle to court to allow the tube to be removed at home, so the boy can die surrounded by his family.
A Superior Court judge in London, Ontario, dismissed the request of the Canadian couple to overturn a decision requiring the removal of their baby’s breathing tube in a hospital instead of at home.
Joseph cannot breathe on his own since he suffers from a severe and fatal neurological disorder. His sister, Zina, suffered from a similar condition and died years ago.
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The world has taken notice of a 14-month old baby from Canada whose family has been fighting the medical establishment since October to help their child breathe. Moe and Sana Maraachli were refused a tracheotomy for their son because the apparently fatal neurological disease that the child has renders further intervention “futile.”
Working with many others, we at Priests for Life arranged to have the baby transferred to Cardinal Glennon Children’s Medical Center in St Louis, and I went on the medical jet to pick up the baby and his father on Sunday night March 13. Now, the child has another chance at getting better care, and the family another chance at maximizing the time they can spend with their child.
A lot of media has accompanied the event. One reporter who was not too interested in covering the story asked, “Who the hell is Baby Joseph and why should I care?”
The short answer is, Baby Joseph is all of us.
After all, the problem underlying this case is not simply one particular hospital or the Canadian medical system. The problem is a philosophy of life that says that how valuable you are depends on how well you function. The problem is a philosophy of medicine that says that if someone is going to die anyway, there’s no benefit in prolonging life. The problem is a philosophy of suffering that says we can actually determine what somebody else’s level of happiness is, and measure their misery, and that if they don’t have the good sense to eliminate it, we can step in and do so against their wishes.
If we don’t think that we and our loved ones will be affected by this philosophy when it comes to our own medical challenges and decisions, we should think again. It’s happening every day, often with subtle or not so subtle pressure from medical professionals, who, instead of rendering medical judgments, render value judgments. Doctors are not supposed to judge for us the “meaning” or “value” of extending the life of a loved one, or our own life. Rather, they are supposed to judge for us whether a particular treatment or intervention will have certain effects on a loved one or on us. They need to leave it to us, in consultation with our family and clergy, to determine what meaning or value we find in the situation.
This is what the parents of Baby Joseph, together with Priests for Life and many others, are trying to say. Baby Joseph’s parents, who want to care for him no matter how long or short his life may be, were told that this life wasn’t worth extending. It’s time to draw a line in the sand and tell the medical profession that this is not their role. “Life not worth living” belongs to a philosophy that led to one of the world’s greatest holocausts, which ended with the declaration “Never Again.”
Our efforts on behalf of Baby Joseph can actually be summarized by those two words.
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We have discussed the Baby Joseph futile care case here. He is the baby who a Canadian hospital wanted to force off life support against the parents will and whose parents want a tracheotomy to help him live longer and at home. The impasse was resolved when the parents were able to move him to a St. Louis hospital.
Well, now Peter Singer has come out against the parents. From his column in the NY Daily News calling continuing care of Joseph “Deeply Misguided: “
Joseph’s parents, who have previously had another child who died from the same disease, objected to the removal of the breathing tube. Instead they wanted an operation performed that would cut a hole in the child’s neck, so that a breathing tube could be inserted in it and kept permanently in place. Joseph’s doctors refused to do this. They acknowledged that the operation might prolong Joseph’s life, but said it would not improve his well-being. A Canadian tribunal agreed with the doctors, giving them permission to remove the breathing tube. Then Priests for Life, a Catholic -abortion and anti-euthanasia organization stepped in, chartering an air ambulance to fly Joseph from Canada to Cardinal Glennon Children’s Medical Center, a Catholic hospital, in St. Louis, which will perform the operation the parents requested.
“We Rescued Baby Joseph!” says a page on the Priests for Life website. The organization’s director, the Rev. Frank Pavone, says he has been told that it could cost as much as $150,000 for Joseph’s stay in the pediatric intensive care unit. That doesn’t include the cost of the aircraft, which would have added thousands more to the bill. Priests for Life is, of course, asking its supporters to donate to pay these costs.
Here’s the irony. According to the most rigorous charity evaluation agency in the country, GiveWell.org, you can save a child’s life for about $1,000. All you have to do is give the money to their top-rated charity, Village Reach, which delivers vaccines and other urgently needed medical supplies to rural areas in developing countries. If Priests for Life were really serious about saving lives, instead of “rescuing” Joseph so he can live another few months lying in bed, unable to experience the normal joys of childhood, let alone become an adult, they could have used the money they have raised to save 150 lives – most of them children who would have gone on to live healthy, happy lives for 50 years or more.
Yet, this is the same Peter Singer who says that parents should be able to have their disabled babies killed.
So, we see the real utilitarian agenda here. And we see the hollowness of Singer’s “preference” approach to utilitarian decision making. It isn’t parental empowerment. It isn’t family intimate decision making. Their “preferences” don’t matter in a futile care imposition. In other words, the consistent through line of Singer’s approaches is the death of disabled infants.
We don’t have to choose between caring for profoundly disabled individuals and helping children who can lead “healthy, happy lives.” In fact, such thinking reveals the profoundly bigoted heart that lurks within the passive prose of Singer’s utilitarian advocacy.
