comments on article: Family may be able to take baby Kaylee home, father says

I read this article from CBC news
Family may be able to take baby Kaylee home, father says. I’m posting the full text below and it will be followed up by my comments and feelings on the situation.

—begin article text—
Family may be able to take baby Kaylee home, father says
Last Updated: Thursday, April 9, 2009 | 8:17 AM ET Comments12Recommend40CBC News
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 on Tuesday. (Family photo/Canadian Press)The parents of a gravely ill baby girl who had offered their daughter’s heart to save the life of another seriously ill infant are now awaiting word from doctors if they can take her home.
“Me and Mom, here, we definitely want to take her home — that’s our ultimate goal, but you know the doctors here at the hospital don’t have the greatest outlook for her,” Kaylee’s father Jason Wallace told CBC News on Thursday morning.
Wallace said that doctors at Toronto’s Hospital for Sick Children told the family on Wednesday night that his daughter’s condition is considered stable but that she could still die at any time.
Two-month-old Kaylee, from Bradford, Ont., suffers from Joubert syndrome, an extremely rare brain abnormality that could cause her to stop breathing during sleep.
The condition comes in a variety of severities but doctors believe she suffers from one of the most severe cases and is under 24-hour care in an intensive-care nursery at the hospital.
The baby was not connected to oxygen on Thursday morning, though she was being placed on a reserve to help her when her breathing stops, said her mother Crystal Vitelli.
Kaylee hyperventilated and stopped breathing for up to 30 seconds several times overnight, Wallace said.
The other baby, Lily O’Connor of P.E.I., who was born March 9 with a rare form of congenital heart disease that leaves her blood short of oxygen, is still waiting in the same Toronto hospital for an available heart.
‘Holding her own’
Wallace said though his infant daughter is a fighter and “holding her own,” he doesn’t see her condition as stable.
“I would say if you have a child who continues to stop breathing there is a significant chance that that’s a threat to her life,” Wallace said. “I would say that if she was stable you could take her home.”
Wallace said the family is exploring options to take Kaylee home.
“If she goes home it will be on the basis of palliative comfort care,” he said.
Kaylee will need 24-hour care if she is sent home, said Vitelli. Out of the hospital, the baby would still require monitors, oxygen, a respirator machine and a feeding pump.
Kaylee also has thousands of cysts in her kidneys and may require a transplant by the time she is two, if she survives.
“We have no fears of the disability that Kaylee would face moving forward,” Wallace said. “I’m prepared to deal with my daughter — with the issues — if we can get her home.”
Vitelli said the family doesn’t want Kaylee to suffer.
“That’s absolutely what we do not want to be faced with,” Wallace said.
Kaylee’s breathing patterns could eventually lead to seizure behaviour due to damaged cells in the brain related to the changing oxygen levels, he said. The seizures could cause the baby pain, he added.
Wallace said the family still would like to donate their baby’s heart if Kaylee does die.
“We don’t want to lose the organ and it’s not damaged in any way, shape or form,” 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.
The operation was called off after Kaylee stayed awake during the one-hour window in the operating room.
The baby has stopped breathing up to 100 times an hour and there is only so long the human body can sustain that pattern, Wallace said.
“Unless they can figure out how to fix the breathing at some point in time she will pass away, that’s a reality,” he said.
The family is getting advice and opinions from doctors around the world, Wallace said.
“We would love our daughter to survive and we’re following the experts,” he said.
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After reading that, it saddens me to know that a child this young is already fighting for her life because of a debillitating disease.
But even though this child isn’t mine, knowing this child is still alive after doctor’s expected she’d die. I have hope that this child will survive and be able to go home.
I’ll post again soon.

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