Jason Wallace, whose 6-week-old daughter is at the center of a public ethics debate in Canada, talks with Ian Brown of the [Toronto] Globe & Mail.

Kaylee Wallace was born with Joubert syndrome, a rare brain disorder which can account for a wide range of symptoms of unpredictable severity. Wallace had been told that his daughter was going to die, and offered to donate her heart for transplantation into another infant.

But Kaylee did not die when removed from a respirator. Wallace said he was offended when a doctor at Toronto’s Hospital for Sick Children suggested that they stop feeding Kaylee. He said he was also told by hospital staff that the money spent caring for Kaylee “would be better utilized on another child.” An excerpt:

Mr. Wallace has transformed himself into a public hero. In private, though, he sounds like someone else — a father facing the terrifying prospect of a life with a profoundly disabled child.

… He has no doubt about what he would have done if Kaylee had shown signs in utero of being severely compromised. “If we had seen these ultrasounds results, we would not have considered bringing such a child into the world.”

… Mr. Wallace often sounds as if he is making the case not just for a transplant, but for Kaylee to be protected from a life of pain. He’s navigating tricky moral waters. He wants his daughter to live, preferably a healthy life. He is nervous that she will survive as a profoundly disabled child. If she dies, he wants her death to save another child. The media scrums seemed to buoy him up earlier this week, but last night they were taking their toll.

“We’ve lost so much in the past two months that we can never get back,” he said, finishing his Tim Hortons coffee in the food court of the great children’s hospital in the city. Afflicted children were all around him.

“And we’ve put it all into my daughter. So I think we’ve given her all the dignity we can. I hope my daughter comes home. I hope she lives.” If she doesn’t, Mr. Wallace and Ms. Vitelli plan to have another child. They’ll have a genetic test first, though.

“There’s a one in four chance,” Mr. Wallace said, “of it happening again.”

Ian Brown’s series about his son, Walker, who has a genetic disorder, is here.

This entry was posted on Thursday, April 9th, 2009 at 10:45 am and is filed under end of life, ethics, genetics, international, NOT2BEMISSED, parents. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.