WINDSOR, Ont. – Baby Joseph, whose parents fought to get him a tracheotomy after an Ontario hospital refused to perform one, has died at his home in Windsor, Ont.
Moe Maraachli, Joseph’s father, said Tuesday night that his 20-month-old son had died. The baby had a progressive and fatal neurological disease and his parents’ wishes for his care put the family at the centre of a months-long controversy.
The couple ended up taking Joseph to a U.S. hospital for the tracheotomy in March after doctors in London, Ont., determined the procedure was futile.
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The doctors at London Health Sciences Centre said the baby should be removed from life support because he would not recover from the rare neurological condition that had left him in a vegetative state.
But the parents feared Joseph would suffer a painful death once his ventilator was removed. They asked for a tracheotomy – the surgical insertion of a breathing tube in his throat – so they could take him home to live his final days surrounded by his family.
The couple had previously lost an 18-month-old daughter to the same neurological disease, known as Leigh Syndrome. She had a tracheotomy and lived at home for six months before she died.
After the London hospital’s decision, Joseph’s parents took their fight to the Ontario Superior Court, but lost. They turned to hospitals in the United States and found one, Cardinal Glennon Children’s Medical Centre in St. Louis, which agreed to treat the child.
Priests for Life, a New York-based group that lobbies against abortion and euthanasia, paid for Joseph’s transfer to the U.S. hospital. The tracheotomy was performed March 21 and the family returned home a month later.
(The Canadian Press, CKLW)
Note to readers: This is a corrected story. An earlier version incorrectly reported the baby was 18 months old.
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