"Baby Joseph" Maraachli died peacefully in his sleep on Tuesday, in Windsor, Ontario, his family said.

Story highlights

Joseph Maraachli suffered from a progressive neurological disease

A hospital in London, Ontario, refused to insert a tracheotomy tube

The infant received a tracheotomy at a hospital in St. Louis

"Baby Joseph" died Tuesday in his sleep

CNN  — 

Joseph Maraachli, the infant who became the center of an international end-of-life debate, died peacefully in his sleep at his Windsor, Ontario, home, a spokesperson for the family said Wednesday.

Widely known in the media as “Baby Joseph,” the 20-month-old boy spent the last several months with his family and died Tuesday afternoon.

“Obviously, it’s been a very difficult day for the family today,” said spokeswoman Emma Fedor. “In some ways, it was a bit of a relief for the family.”

Joseph’s family had refused to accept a recommendation by a Canadian hospital to remove the boy’s breathing tube and allow him to die. In March, the infant received a tracheotomy at a children’s hospital in St. Louis, Missouri.

He was able to go home April 21.

“By providing him with this common palliative procedure, we’ve given Joseph the chance to go home and be with his family after spending so much of his young life in the hospital,” said Dr. Robert Wilmott, chief of pediatrics for SSM Cardinal Glennon Children’s Medical Center in St. Louis.

A London, Ontario, hospital where Joseph was receiving care for a progressive neurological disease refused to perform a tracheotomy, a surgical procedure in which an opening is made into the airway through an incision in the neck to allow for suction of fluid out of the lungs.

In court papers, doctors in Canada said there was no hope for recovery. They would not perform a tracheotomy because they considered it to be invasive and not recommended for patients who require a long-term breathing machine.

Parents Moe and Sana Maraachli refused to accept the recommendation. The Maraachlis’ daughter, Zeina, had died at home in 2002 after a tracheotomy after suffering similar complications, and the family wanted to offer the same care to their son.

“To go through it once is enough for a lifetime, to go through it twice, it’s just … unbelievable,” Fedor said.

Joseph was “very peaceful, in no pain whatsoever, no distress,” when he died, Fedor said. He was buried Wednesday next to his sister.

The family was thankful for those who helped and prayed for Joseph, she added.

“The heart of the issue would come down to the mix between respecting the parents’ rights … to be in comfort of (their) own home, to die on God’s time,” said Fedor.

The family countered assertions that Joseph was nonresponsive, blind and deaf, she said. Instead, the boy could hear the parents’ voices and look for them, Fedor told CNN. The family believed that, after a tracheotomy, Joseph could be freed from machinery.

The parents said that they, rather than physicians, should make a judgment on quality of life, Fedor said.

The Maraachli case caught the attention of the group Priests for Life, which funded Joseph’s transfer and treatment at the SSM Cardinal Glennon Children’s Medical Center. That hospital deemed the procedure medically appropriate and Baby Joseph underwent a tracheotomy there on March 21.

In April, Frank Pavone, national director of Priests for Life, said he considered this a “victory over the culture of death.” He says “(Joseph) has gained benefit from his tracheotomy, is breathing on his own, and is going home to live with his parents.”

Priests for Life is a Catholic pro-life organization that functions as a network to prevent abortion and euthanasia. The group often is noted for the graphic images depicting abortion its members and supporters use to make their case.

The London Health Sciences Centre – the hospital where Joseph was initially treated – in March said that “there are clearly differences in the approach of these centres to the management of end-of-life care in this tragic situation” and that “the medical judgments made by LHSC physicians remain unchallenged by any credible medical source.”

Nurses helped the family provide 24-hour care for Joseph in his final months. “There was always somebody by his side,” Fedor said.

The child was on almost no medication and apparently was in no pain, Fedor said.

“When he was in the arms of his parents, you could tell,” she said. “He was settled when he was in their arms.”