Baby Transplant: Hope Turns To Heartbreak
11:***m UK, Wednesday April 08, 2009
The parents of a terminally ill baby who wanted to save another child are distraught after they switched their daughter's life support off and she stayed alive.
Two-month-old Kaylee carried on breathing after her life support was turned off
Two-month-old Kaylee Wallace has severe kidney problems, and was born with Joubert syndrome, a rare brain condition that means she needs a respirator to breathe when she sleeps.
Her heart-broken parents, Jason Wallace and Crystal Vitelli, from
Ontario,
Canada, knew she would die soon.
But they found solace in the idea of having Kaylee's heart live on in another child.
They were told about a baby in the same Hospital for Sick Children in
Toronto, who needed a heart transplant.
The couple met the baby's parents and the life-saving operation was about to go ahead.
I tried so hard to just tell her calmly: 'Go to sleep honey, its time to go see the angels.'
Kaylee's mother Crystal Vitelli
But when Kaylee's life support was switched off, she carried on breathing, and the surgery had to be called off.
This is because legally the heart needs to stop beating for five minutes before a transplant can take place.
However, doctors said there is still a chance her heart could be donated to another child before she dies.
"This was not our wish and we're very upset about this," said Mr Wallace as he described their emotional ordeal.
"It's because we're trying to save a child, you know, our daughter's still here we love her, yes.
"But people must understand this is not completely about Kaylee - it's about another child to be saved.
"I tried so hard to just tell her calmly: 'Go to sleep honey, its time to go see the angels.'
"I will continue to fight this - if she's going to die, we still have to try. The heart's there."
Dr James Wright, the hospital's surgeon-in-chief, said: "This is a highly complicated situation fraught with personal, moral and ethical issues."
But he said the hospital had not ruled out another attempt at surgery.
Baby Kaylee stable, no longer a heart donor candidate
P.E.I couple told their baby Lily could live 'weeks to months' without transplant
Last Updated: Wednesday, April 8, 2009 | 3:38 PM ET
CBC News
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) 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.
Lily O'Connor is in intensive care after a planned heart transplant was called off. (Family photo)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.
Baby Transplant: Hope Turns To Heartbreak.
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