Family refuses to remove baby’s breathing tube, hopes he’ll go to Detroit hospital

LONDON, Ont. – A father who has been battling to stop a London, Ont., hospital from removing his terminally ill son from a ventilator stood his ground Monday and defied a court order requiring him to give consent.

Moe Maraachli says he and his wife Sana Nader are happy the breathing tube keeping their 13-month old son Joseph alive has not yet been removed.

But their fight to get the boy a tracheotomy so they can take him home to die isn’t over.

“I’m very excited because my son doesn’t remove his tube today,” said Maraachli, who has been sleeping at the hospital since Friday.

“All my family is happy. We are happy. We feel it’s really Family Day today.”

The Windsor, Ont., couple has been fighting for months against doctors at Victoria Hospital in London who say their son should be removed from life support because he will not recover from the rare neurological condition that has left him in a vegetative state.

The family fears Joseph will suffer a painful death if the ventilator is removed, and prefers that a tracheotomy be performed so they can take him home to live his remaining days surrounded by people who love him.

The couple’s 18-month-old daughter died almost nine years ago from a similar medical condition. She had a tracheotomy and lived at home for six months before she died, said Maraachli.

But, last Thursday, Ontario Superior Court Justice Helen Rady ordered the couple to agree to take Joseph off the ventilator by 10 a.m. Monday.

The judge was upholding a decision already made by Ontario’s Consent and Capacity Board.

Because the London hospital could not get consent to remove the breathing tube from Joseph’s parents or other family members, it has the right to seek consent from the Office of the Public Guardian and Trustee, said Mark Handelman, Maraachli’s lawyer.

But Maraachli is hoping his son Joseph will be transferred to Michigan’s Children’s Hospital in Detroit.

Joseph has been treated there before _ under the Ontario Provincial Health Insurance Plan _ and the family feels they would have another chance at persuading doctors to perform a tracheotomy if he returns there.

The couple’s friends recently contacted the U.S. hospital about a transfer and the London Health Sciences Centre, which Victoria Hospital falls under, was asked to send Joseph’s medical records there on Sunday.

The London hospital sent Joseph’s medical chart by courier to Detroit on Monday, said spokeswoman Laurie Gould.

“At this point in time we have not received any request for transfer,” said Gould.

If a transfer request is made, Gould said her hospital would contact the public guardian and “wait for their direction.”

The London hospital would not need permission from the public guardian to transfer Joseph to Michigan, said Handelman.

Alex Schadenberg, executive director of the Euthanasia Prevention Coalition, called the baby Joseph case sad and tragic.

Schadenberg questioned why doctors, not parents, should have the final say over their baby’s care.

“Is it right that the doctor has now so much power?” asked Schadenberg.

“I think the balance of power has shifted in Ontario too far, and I’m getting very concerned about who has the right to decide.”

Gould said the case is certainly “emotionally charged.”

The hospital has received calls and emails from the public, some offering prayers for the baby, who’s been at the hospital since October, she said.

As cars honked their horns, a couple of dozen people holding signs and photos of the baby held a vigil outside the hospital Monday morning, an hour before the baby was to be removed from the ventilator.

Maraachli’s sister-in-law Samar Nader said the family is “relieved and thankful” for all the support they’ve received from the public.

“It’s true that miracles do happen and I would never have expected for my nephew to live past 10 o’clock without the people’s help,” she said.