'Hope turns to heartbreak as baby's transplant put on hold'
"The enduring life of Kaylee Wallace unleashed a torrent of emotion yesterday as her father vowed to continue his fight to donate the dying two-month-old's heart.
A transplant attempt meant to save the life of a second girl failed last night after Kaylee, who has a rare condition that causes her organs to shut down in sleep, stayed awake when taken off life support.
'I tried so hard to just tell her calmly: Go to sleep honey, its time to go see the angels,' father Jason Wallace said. 'I will continue to fight this ... if she's going to die, we still have to try. The heart's there.'
After an hour, Toronto hospital officials abandoned the plan, leaving the high-profile transplant in limbo.
'Her heart continued to beat, she was in no distress, so she's not a candidate for donation,' Jim Wright said.
Mr. Wallace and the baby's mother, Crystal Vitelli, took Kaylee home two weeks ago, believing their little girl was well enough to leave hospital. Shortly afterwards, they were back. Her rare condition, Joubert syndrome, has left her unable to breathe while asleep without a machine.
'She moves, she wakes up, she opens her eyes, but when she sleeps, she essentially dies,' Mr. Wallace said. 'It's hard watching her be a vibrant baby. When she goes to sleep, the machine does the rest.'
Meanwhile, Melanie Bernard and Kevin O'Connor of Prince Edward Island were awaiting a miracle for their daughter Lillian: an infant organ donation, of which there are usually only two or three a year in Ontario.
The parents met at Sick Kids and discovered what seemed like a perfect match, although it was at first ruled out.
Kaylee was first deemed unsuitable as a donor. Doctors feared she would die too slowly, thereby damaging the heart and rendering it unusable for transplant. But that appeared to have changed yesterday, when a reappraisal of her health made her eligible to donate.
'This is a highly complicated situation fraught with personal, moral and ethical issues,' said Dr. Wright, the Hospital for Sick Children's surgeon-in-chief.
Kaylee's parents agreed to try, adamant that their daughter's life should end in the potential saving of another. They were pillars of strength as they spoke before the attempt.
'She's brought so much to our families,' Mr. Wallace said. 'This is our first child. The dreams of the grandparents and the hopes of the future - if you would have a child, to go to school and grow up and do all these things - those dreams have been dashed.'
After the failed attempt, with his wife inside the hospital holding her daughter, Mr. Wallace pledged to fight for a life-saving donation as long as his daughter's own fate is sealed. Both girls returned to intensive care last night.
'We need to consider trying this again. I know it's hard on everybody out there,' he said. 'The reality is this isn't about the TV cameras and everything else, it's about a child.'
The case raised issues about directed organ donations, and donations made after cardiac death.
While living donations can be made for a specific person - such as donating a kidney to a family member - medical ethicist Kerry Bowman said this situation was different.
It was essential that the normal donation protocols be followed, he said, and they were. Kaylee's heart was made available to the entire transplant waiting list and then given to the person in most need. Despite widespread speculation, it wasn't clear if the second child was, in fact, Lillian.
'People are horrified by what a difficult situation it is, but I don't find ethically it's as tense as some cases we see,' Mr. Bowman said.
Frank Merkell, president of the provincial organ donation agency, the Trillium Gift of Life Network, praised the family's leadership.
'This can't help but impress people. He [Mr. Wallace] is a leader. He's providing the public leadership we so badly need,' Mr. Merkell said. 'I wish every family in Ontario felt as strongly about donation as this family does.'
The high-profile case has resonated from coast to coast. Two days ago, Brian and Denise Geislinger turned off their phones, bought a cake, and marked in tears what would have been the first birthday of their first child, Jonas. But last year, with their boy critically ill and without hope of recovery, the Edmonton couple took him off life support. He died at just 27 days old.
'They pulled the tubes out, and we got to hold him, and he was our first child as well. We know exactly what they're going through,' said Ms. Geislinger, now six months pregnant. 'We're the part of this little club that we never thought we'd ever belong to, and that we never wanted to be, and we're fundamentally changed people.'
'What an amazing thing they [Mr. Wallace and Ms. Vitelli] are doing, to save another couple ... it's taking something so horrible and making something so positive.'"
Source:
http://www.theglobeandmail.com
TENILLE BONOGUORE AND JOSH WINGROVE
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