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'Baby Joseph' receives tracheotomy at St. Louis hospital

By: Sabriya Rice, CNN Medical Producer
Joseph Maraachli,  who has a rare genetic neurometabolic disorder, received a tracheotomy Monday in St. Louis.
Joseph Maraachli, who has a rare genetic neurometabolic disorder, received a tracheotomy Monday in St. Louis.
  • Canadian doctors had refused, citing no hope for recovery
  • Surgical procedure allows use of mechanical ventilator
  • Boy has rare genetic disorder

St. Louis (CNN) -- A 1-year-old boy whose family fought a Canadian hospital over whether he should be allowed to die received a tracheotomy at his St. Louis hospital early Monday morning.

Officials at the SSM Cardinal Glennon Children's Medical Center where Joseph Maraachli -- widely known in the media as "baby Joseph" -- is being treated, wrote that following a thorough examination by a multi-disciplinary team of specialists and ethicists, a tracheotomy was deemed "medically appropriate" for the child.

The surgical procedure creates an opening into the airway through an incision in the neck, and a tube allows for suction of fluid out of the lungs. According to the hospital, this creates a safe and stable way to use a mechanical ventilator.

Joseph, who was born in January 2010, had been in the care of the London Health Sciences Centre in Canada since October. His doctor, in court papers, said there was no hope for recovery and recommended that the infant's breathing tube be removed and he be allowed to die. The hospital would not perform a tracheotomy because they consider it to be an invasive procedure, one not typically recommended for patients who require a long-term breathing machine.

The child's parents, Moe and Sana Maraachli, refused to comply with court orders and sought instead to have their son transferred to a location where he could get a tracheotomy combined with continued mechanical ventilation and later be transferred home into their care.

Should infant be allowed to die at home?
  • Baby Joseph
  • Canada
  • St. Louis

Physicians at Cardinal Glennon say Joseph suffers from a rare genetic neurometabolic disorder called Leigh Syndrome. According to the National Organization for Rare Disorders. The condition is characterized by the degeneration of the central nervous system and is inherited in most cases. In February, a family spokesperson told CNN the Maraachlis have undergone genetic testing, but no genetic link had been found.

Joseph will remain in the intensive care unit for seven to 10 days and then head to Ranken Jordan, a pediatric specialty hospital in St. Louis, before being discharged and transported to his family home in Windsor, Ontario.