Joseph Maraachli

The Joseph Maraachli case refers to an international controversy over the life of Joseph Maraachli, commonly known as Baby Joseph, a Canadian infant who was diagnosed with a rare progressive and incurable neurological disorder called Leigh's disease.

After Canadian doctors refused to perform a tracheotomy, calling the procedure invasive and futile, Joseph's parents fought to have him transferred to the United States, arguing that while Joseph's disease was terminal, a tracheotomy would extend his life and allow him to die at home.

After several months and efforts by American anti-abortion groups, Joseph was transferred to a Catholic hospital in St. Louis, Missouri, where the procedure was performed.

The successfully-obtained procedure extended Joseph's life for several months.

His parents, Moe Maraachli and Sana Nader, immigrated to Canada from Lebanon in the 1990s, settling in Windsor, Ontario.

In 2002, the couple's 18-month-old daughter, Zina, died from a degenerative disorder.

After undergoing a tracheotomy, she was taken home and cared for by her parents for her final six months.

Then when she was near death, her parents took her back to the hospital, hoping to make her as comfortable as possible.

Moe Maraachli once repaired computers, but gave up this work to take care of his wife Sana, who has lupus.

The couple depended on Sana's disability payments and support from her family.

When Joseph was around three months old, his parents said they noticed he couldn't eat or breathe properly, and he wouldn't open his eyes or cry.

Joseph Maraachli was born on January 22, 2010.

In June 2010, they took him to a hospital in Michigan, a few miles away from Windsor, which is located directly on the Canada–United States border.

At the Michigan hospital, he was diagnosed with a metabolic brain disease that the doctor said would make him developmentally delayed, and was treated, his health reportedly improving.

However, in the car on the way back from a family trip to Toronto in October 2010, he stopped breathing, so he was rushed to an emergency room in Ingersoll and later transferred to the London Health Sciences Centre (LHSC) in London, Ontario.

Tests and examinations on Joseph were carried out by eight specialists over a few weeks following his transfer to the LHSC.

The doctors concluded that he was suffering from a "severe and progressively deteriorating neurological state" and was in a persistent vegetative state.

They were in "unanimous agreement" that he did not have any chance of recovering and that there were no treatment options available to help him.

The parents disputed the conclusion that Joseph was in a persistent vegetative state, saying he responded to being tickled and jostled when he felt discomfort.

The family wanted a tracheotomy for him, believing it would allow him to breathe on his own, and thus be taken out of the hospital so he could "die peacefully with mom, dad at home."

They hoped the procedure could prolong Joseph's life by up to six months because it had extended his older sister Zina's life by six months when she was dying of the same condition.

The couple also stated that, if their son was able to live longer due to the procedure, he would die "when God says he should."

The doctors at the hospital refused to perform a tracheotomy because they said it would needlessly protract Joseph's death and increase the risk of infection, pneumonia, and other complications.

Since the time of Zina's tracheotomy, more had been learned about the condition, leading doctors to conclude it was not appropriate in Joseph's case.

Dr. Douglas Fraser, a pediatric critical care specialist and the lead doctor handling the case, proposed that Joseph's breathing tube be removed, with the expectation that he would die soon afterward from his inability to breathe unaided.

His parents refused to agree to this proposal.

London Heath Services Centre directed the case to the Consent and Capacity Board of Ontario.

It explained in a statement that it sought the Board's decision on "whether or not Joseph’s parents were complying with the principles for substitute decision-making under the provincial Health Care Consent Act in refusing to consent to the proposed treatment plan."

Joseph died on Tuesday, September 27, 2011, at his home.

The hearing before the Board took place in January 2011.

On January 22, the Board released its decision, holding that the course of action in the child's "best interests" would be "removal of the endotracheal tube without replacement, a Do Not Resuscitate order and palliative care."

The parents were ordered to consent to the removal of the breathing tube.

They decided to appeal the Board's decision in the Ontario Superior Court of Justice, retaining a lawyer, Geoff Snow, through legal aid.

The case was heard by Justice Helen Rady on February 17, 2011.

An hour after the lawyers delivered their arguments, Justice Rady returned with her decision, upholding the Board's decision as "reasonable" and dismissing the family's appeal.

Removal of the breathing tube had been scheduled for the morning of February 18, but Rady moved the date to February 21, stating the intent of giving the family "adequate time to say their good-byes."

The family was ordered to give consent for the breathing tube's removal by February 21.

On February 20, the family fired Snow, as he did not advise pursuing an appeal of Rady's ruling.

With the support of Alex Schadenberg of the Euthanasia Prevention Coalition, they took on a new lawyer, Mark Handelman.

The family refused to consent to the breathing tube's removal, and thus it was not removed on February 21.