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Baby no longer a heart donor candidate

A baby girl at Toronto's Hospital for Sick Children whose parents offered her heart to a seriously ill P.E.I. infant has been on and off a respirator throughout Wednesday morning after breathing on her own overnight, her father said.

Kaylee Wallace suffers from a rare brain abnormality that could cause her to stop breathing, but she continued to do so after she was removed from a respirator Tuesday. (Family photo)
Meanwhile, hospital officials said two-month-old Kaylee Wallace, who was believed to be terminally ill, is no longer an organ donor candidate after she exceeded doctors' expectations and survived being taken off the respirator on Tuesday night.

Her father Jason Wallace told CBC News the experience has been an emotional roller-coaster, and he said doctors have still not been able to give a prognosis.

Dr. Jim Wright, chief of surgery at Sick Kids, told CBC News on Wednesday that Kaylee will continue to be treated at the hospital's intensive care unit.

"Certainly at this point, she is not a candidate for transplant," he said.

Joubert syndrome
Joubert syndrome is a rare disorder that affects the cerebellar vermis area of the brain, which controls balance and co-ordination.

Common signs and symptoms include:

Ataxia or lack of muscle control.
Abnormal breathing patterns.
Sleep apnea.
Decreased muscle tone.
Jerky eye movements.
Developmental delays in gross motor, fine motor and speech.
Malformations such as extra fingers and toes, cleft lip or palate and tongue abnormalities. Kidney and liver abnormalities may develop.
Seizures may occur.
Common treatments include infant stimulation, physical therapy, occupational therapy, and speech therapy for developmental delays. Infants with abnormal breathing need to be monitored for apnea.

In 1969, Marie Joubert first identified four cases in siblings who were admitted to Montreal Children's Hospital.

The Joubert Syndrome Foundation knows of about 40 cases in Canada, said spokeswoman Karen Tompkins of Essex, Ont.
Kaylee, from Bradford, Ont., suffers from Joubert syndrome, an extremely rare brain abnormality that could cause her to stop breathing during sleep.

Wright said the condition comes in a variety of severities.

"It was believed that Kaylee had the most severe kind and she would not be able to breathe on her own," he said.

Kaylee was expected to die on Tuesday night, and surgical teams were on standby to perform a risky procedure known as death cardiac donation to harvest her heart and transplant it into one-month-old Lily O'Connor. Lily O'Connor is in intensive care after a planned heart transplant was called off. (Family photo)
But the operation was called off after Kaylee stayed awake during the one-hour window in the operating room.

Wallace and Kaylee's mother, Crystal Vitelli, had come to terms with the idea her heart would live on in another baby and had already said goodbye to their child.

Lily was born March 9 and has truncus arteriosus, a rare form of congenital heart disease that leaves her blood short of oxygen.

On Saturday, Lily's parents, Kevin O'Connor and Melanie Bernard, thought they had found the miracle they were looking for when they were approached by Kaylee's parents at the hospital about a possible transplant.