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   Publicity around infant girl's donor drama angers

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Topic: Publicity around infant girl's donor drama angers (Read 949 times)

AmberJ
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Publicity around infant girl's donor drama angers
« on: Apr 9^th, 2009, 9:07pm »

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Publicity around infant girl's donor drama angers other parents at Sick Kids
2 hours, 14 minutes ago

By Colin Perkel And Allison Jones, The Canadian Press

TORONTO - The unfolding Kaylee Wallace heart-transplant saga that has captured both media attention and sympathy across the continent has angered other parents with desperately ill children at the same hospital who worry that a disturbing precedent has been set.

They're concerned that Kaylee's parents dictated who should get her heart in the event of her death, and that the Hospital for Sick Children caved to media pressure in agreeing to their request.

"They've set a precedent that if you need a heart or another organ, find another family and make friends with them, and maybe when their kid dies, they'll give you that organ you need," Jen, whose eight-month-old has spent the past four months at the hospital, said Thursday.

"That is ridiculous."

Two-month-old Kaylee, who has a rare, fatal brain condition, was taken off a respirator at her parents' request Tuesday in the belief she would die and her heart could go to month-old Lillian O'Connor, another critically ill baby.

Kaylee suffers from Joubert syndrome, and it was believed the severity of her case would cause her to stop breathing without a respirator when she sleeps.

The girl, however, defied the odds and continued breathing on her own, though her kidneys are still severely damaged.

On Thursday, after an afternoon meeting with doctors, Jason Wallace said his daughter's condition was deteriorating.

"The point we've come to is we're not going go with life-support to assist her," said Wallace, who added that they would let Kaylee "do her journey."

"At some point in time we have to think about what this little girl is doing... and stop interfering with her destiny, and her journey, and her life."

Doctors told Wallace that with one year of support on a relatively non-intrusive respiratory machine, Kaylee's quality of life could improve, he said. Wallace and Kaylee's mother are considering it, he said.

The heart-wrenching case has played out very publicly and in full view of other parents with heart-sick children at the hospital.

Frank Markel, who heads the agency in charge of distributing transplant organs in Ontario, was emphatic that Lillian was deemed a suitable candidate for Kaylee's heart strictly on need.

The organ-donation system is based on trust that it operates fairly, said Markel, president of the Trillium Gift of Life Network.

"Both families chose to go public . . . and the donor father made public statements about his wish that Lillian could receive the heart," Markel said.

"So, people seeing all of that and hearing the fathers, they may came away with that impression (it was a directed donation) . . . but what people need to realize is it's not the fathers' decision."

On Wednesday, the hospital issued a statement stressing the donor list is "prioritized by Trillium Gift of Life according to those most in need." Hospital officials have also repeatedly said national protocols would be followed during any donation process.

Those protocols dictated that Kaylee be taken off breathing support and if died within a certain window of time, her heart would be removed and transplanted. When she defied her prognosis Tuesday, the hospital said Kaylee was no longer a donor candidate.

Early Thursday, Kaylee's father issued an emotional rebuttal to what he called the public's harsh judgment of the route he and his wife have taken.

"There's frustration now and anger actually from us that the public's judging us, thinking we want our daughter to die in some way, that we're trying to be media spotlight people - we're not," Wallace said.

"To feel like we're being judged by the public now is just a devastating toll on us even further now because this is about wanting our child to live."

Later Thursday, the couple said they were turning away from the media spotlight, saying that going forward they would deal with Kaylee's ordeal in private. But Wallace made no apologies for taking their story public in the first place.

He said they went to the media in an attempt to change the minds of the hospital after they were told Kaylee might not meet national standards for a heart transplant.

"The Hospital for Sick Children was going to let our daughter die and put her organ in the ground," Wallace said.

"You can't do that. Organ donation is important. That little girl (Lillian) waiting for that acorn-sized heart, the likelihood of receiving one is very limited."

Wallace is still holding out hope that Kaylee's heart could be donated to another child if his daughter can't pull through.

Across Ontario, 26 children are awaiting organs, eight in need of a heart.

Another mother, Mackenzie, of North Bay, Ont., was anxiously waiting at Sick Kids on Thursday to find out whether her six-month-old son, whose heart is enlarged on one side, will go on the transplant list.

She worried other families might decide they've been waiting too long for an organ and go to the media, and that might mean another baby could get a heart before her infant.

"It's nerve-racking," she said. "You don't know what to expect."

The parents, who spoke on condition their full names not be used, also said they felt as if their temporary home, the hospital, had been invaded by the media camped waiting for every scrap of information about Kaylee and Lillian.

"We're not jealous of the attention (but) everybody is making it seem like they are the only two babies in the whole hospital," said Jen, who lives near London, Ont., but will spend her 20th birthday Friday and long weekend in the hospital.

"Everybody's in the same boat, and showing favouritism because he runs to the media just takes away the faith in the health-care system."

Dr. Sam Shemie, medical director for organ donation at Canadian Blood Services, praised the Wallace family for taking a "heroic" position in trying to help another family.

"It really personalized what is really a health-care dilemma and many would say a tragedy in that there are an insufficient number of donors," said Shemie, an intensive-care physician at the Montreal Children's Hospital.

"It makes people reflect on the issue."

Shemie also said the donation system is not geared for directed donations.

"The system has principles of ethical practice and that a principle of ethical practice is that families cannot direct deceased donations."

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AmberJ
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Re: Publicity around infant girl's donor drama ang
« Reply #1 on: Apr 9^th, 2009, 9:09pm »

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This is something I've been following... Exactly a year ago Avery was in the (Sick Kids) hospital fighting and while she did well considering how early she was, there were times when it was very touch and go and Dan and I knew we'd be in a really difficult place to make decisions, but fortunately our little girl fought through and is now a healthy toddler learning how to walk and talk...

« Last Edit: Apr 9^th, 2009, 9:18pm by AmberJ »

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