Little Isaiah May has been give more time to live so lawyers and medical experts can review whether he should remain hooked up to a hospital ventilator at Stollery Children's Hospital in Edmonton.HO/The Canadian Press
Isaiah May suffered such severe, irreversible brain damage at birth that the hospital sought to disconnect the ventilator keeping him alive - sparking a legal fight with his parents that will bring both sides into an Edmonton court Wednesday.
Phebe Mantha, who became severely disabled during delivery, is also the subject of a court case. Her parents are suing a hospital for reversing their decision and keeping their daughter on life support without their consent.
The two cases raise identical questions: Who decides when medical treatment is futile? When does life-saving care turn into a superhuman effort to prolong death?
"I believe any life is worth fighting for," says Rebecka May, who pumps her breast milk for son Isaiah to receive through a tube. "Even if a person has disabilities, they deserve a chance; they are still a person; they still have emotions."
At issue is Isaiah's health. He emerged from his mother's womb after a long labour at a Rocky Mountain House, Alta., hospital on Oct. 24. The umbilical cord had been wrapped around his neck. At birth, Isaiah's eyes were shut and he was silent, Ms. May recalls of her son, who was resuscitated and then taken to Stollery Children's Hospital in Edmonton.
Three months later, Ms. May says, her son has improved: his eyes dilate, he bends his knees and he has gained more than three pounds.
But David Steele, lawyer for Ernest Phillipos, clinical director of Stollery's neonatal intensive care unit, says the baby has irreversible brain damage due to lack of oxygen at birth and will never have any meaningful function or recover.
With parents and doctors in a medical stalemate, it will be up to Madam Justice Michelle Crighton to decide today on how best to go forward. The process will undoubtedly include further assessments, likely from a pediatric neurologist.
"It's a big decision; it's an end-of-life decision. Time has to be taken so all the questions are answered, so they are at peace with the decisions reached," says Rosanna Saccomani, lawyer for the May family. "The question was: What is the rush?"
The decision to disconnect newborns from life support are made in hospitals between parents and physicians, then carried out to their wrenching conclusion.
An ethical consultation usually takes place only if there is no agreement or if the process of coming to a decision has been unusually long and difficult, according to pediatrician Nuala Kenny, professor emeritus of bioethics at Dalhousie University.
A note informing parents of the withdrawal of life support - as was the case with Isaiah, whose parents learned he was to be disconnected from the hospital ventilator after 2 p.m. on Jan. 20 - is sent when other forms of communication have failed, she says.
Although she is not involved in the case, Dr. Kenny says the assumption is that continuing medical intervention is "no longer achieving any of the reasonable goals of medicine." One of those goals is not prolonging dying.
"Ventilating a baby is not a risk-free, harm-free endeavour," she says.
And yet, sometimes a baby with a very poor prognosis surprises everyone.
Such was the case with Phebe Mantha, who suffered severe complications during her birth on Nov. 5, 2007, before being transferred to Montreal Children's Hospital.
When parents were told Phebe had little chance of survival, they decided in consultations with doctors to remove her from life support - a ventilator and feeding tube - and she was expected to die within hours, says Jean-Pierre Ménard, a medical malpractice lawyer representing the couple.
But the unexpected occurred: after Phebe was disconnected from the ventilator, she could breathe on her own. The issue became what to do about the feeding tube.
Phebe's parents thought their decision meant that she was to have the feeding tube removed and receive palliative care of fluids and morphine, but instead there was an ethics review, says Mr. Ménard.
When the hospital's ethics committee overturned the parents' decision to withdraw life support, it violated Quebec law, because only the court has the power to do that, Mr. Ménard says. (The hospital declined comment, saying the matter is before the courts.)
"They love this child, but they don't accept that this child is being obliged to live through a decision they have not been involved in and the quality of life has not been considered; there's almost no quality of life," says Mr. Ménard, who is suing the hospital on behalf of the parents, who are seeking financial support for their baby. "… It's a very, very sad situation. The ethics committee never considered the consequences of their decision."
Phebe's mother, Marie-Eve Laurendeau, 32, said in an interview that the needs of her daughter, who is now 26 months old, are immense, and as a result, she has not been able to return to her job as a teacher for three years. She has since given birth to a son.
"She's in pain all the time," she says of Phebe. "… She's not walking, not sitting. She can't hold her head up all the time. She doesn't talk."
And yet, Ms. Laurendeau says that, as hard as it is, she loves Phebe so much - she is part of the family.
It is that love for a baby that Rebecka May says keeps her going and gives her the will to fight for Isaiah.
"This will be hard on the doctors and parents," says Dick Sobsey, director of the John Dossetor Health Ethics Centre at the University of Alberta. "But it's not about them or who wins or loses, it's really about this baby and what's best for this baby."