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.
Hospital officials said two-month-old Kaylee Wallace, who was believed to be terminally ill, is in stable condition and 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.
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.
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, the recipient, was born March 9 with 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.
'She's a fighter'
Doctors at the hospital, however, initially downplayed the chances of a successful procedure, saying that when Kaylee was taken off life support, it would likely take her too long to die to make her heart useful for transplant.
Speaking to reporters as they entered the hospital on Wednesday, the P.E.I. couple said they were told Lily could live "weeks to months" without a transplant.
"It depends on how she is, and she's a fighter," her father said.
What is 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.
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Joubert Syndromeby rarediseaseday7,672 views
i ended up meet her father last night and i feel for him he's the nicest guy ever and is only looking out for the best interests of his daughter and just wants her to have as much of a life as she can have she's now 2 1/2 around and going strong she's a fighter and have proven all the doctors wrong keep it up Kaylee
Cena311 3 months ago
Sick Kids Security made a mockery of this gentleman. They would insult him and cause him problems every time he came on the premises with his daughter its sickening to see this.
Bacara01 7 months ago
@higgleman7 Ah karma will bite ur disease free ass- hopefully causing it to get flesh eating disease!
brendaeileen 1 year ago
you're an idiot, caseyfan. They're fighting to keep thier daughter alive. The father made some mistakes but that doesnt mean his daughter is a bad person or deserves to die. They have fought for the equipment required to keep her alive at home to make her as comfortable as possible. She is now year old and is highly responsive. Get your facts.
Dawan1621 1 year ago 2
obvious troll is obvious
masterofoverkill2 2 years ago
you are my hero and some diseases do make u look funny like cleft pallet omg i love u
theprofesser85 2 years ago
i love u higgleman
theprofesser85 2 years ago
oh my go higgleman my son has truncus arteriosus and i cant believe u have said that!!!!
shonaky 2 years ago
Well it sucks for them that they don't have an amazing life like mine. And for the dying alone thing. I've got a HOT ass girlfriend. Sucks for those people cuz they can't get girls cuz their faces look weird and funny cuz of diseases.
P.S. I am 11 years old. Just thought you should know.
higgleman7 2 years ago
Well not giving a shit about others, is definitely not a god given - I dont know what you are, selfish, self absorbed? BUT its people like you end up dying alone and miserable..I am sorry for you..NO diseases are not funny to look at they are painful and those people came into this world with expectations and a life just like your sorry ass did!
kucletsa 2 years ago