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PRESCOTT Pamela Harper knows too well the unbearable pain of losing a child. Her grief over the death of her daughter, Katherine Paine, 12, last month at Toronto's Hospital for Sick Children following complications after a heart transplant remains a raw, open wound. Harper, however, is struggling now to channel her grief into something productive, something Katherine would want her to do. Having seen firsthand the incredible need as her daughter waited months for a new heart, Harper is urging parents to talk to each other and with family members about donating their childps organs in the event of a tragedy. Otherwise, Harper said, families won't be able to think clearly when confronted with the question of organ donation in the worst possible moment of their lives. "I want people to be aware before it happens, so you're ready for it ... because at the time it happens, your emotions are going crazy," said Harper, speaking from her home in Prescott where she lives with Katherineps surviving twin sister, Robyn, a Grade 7 student at St. Mary Catholic School in Brockville. As she talks, Harper is careful to say she realizes itps a scenario no parent wants to consider. "God forbid anything should happen to a child. But think about it, this is a gift you are giving to someone," said Harper, whose daughter was taken off life support on March 9. "You can't do anything for your child now. It kind of makes them live on in somebody else, you're giving someone else a chance," she said.
"That heart was a great heart ... it gave Katherine a chance," she said. "It was something else that happened to Katherine." Instead, the family believes a brain hemorrhage caused massive organ failure, although she is awaiting results of an autopsy. Her daughterps body was also traumatized, added Harper, from carrying several kilograms of fluid on her tiny frame as a result of heart and lung problems. "What she endured in that last year was hell, really," said Harper, adding, "Through it all she was so amazing. She never complained. "Harper freely admits a year ago she'd have felt horrified and angered if a doctor had asked about donating her child's organs in the moments after death. But her perspective has changed. "Until I had gone through this, I had never realized how dire (the need) was," said Harper, noting she carried her organ donation card around without a thought about its significance. "You never know how important it is until you are in the system." Her whole world began to change during last year's March break when both Robyn and Katherine developed an infection. While Robyn soon got over it, the bacteria attacked Katherine's heart, seizing on a birth defect known as aortic valve stenois, which restricts blood flow from the heart. She developed endocarditis, a life-threatening inflammation of the heart's lining, as a result of the bacterial infection and eventually had open-heart surgery at Children's Hospital of Eastern Ontario (CHEO) in Ottawa on April 25 of last year. Katherine spent 18 hours in the operating room that day. "We just didn't realize how much damage it had done until she had open-heart surgery. ... It was just devastation," recalled Harper. "She had a massive heart attack in surgery ... her right heart never, ever recovered. Katherine remained in hospital until June, but had to return to CHEO in July due to a dangerous buildup of fluid. She underwent a procedure known as pleuradisis in which the lining of the chest cavity is scraped and a talc powder applied in an attempt to reduce fluid retention. It didn't work, though, and by Sept. 29 Katherine was put on the waiting list for a new heart and she and her mom began their stay at Ronald McDonald House in Toronto awaiting the telephone call."We always had hope that this was going to give her a new life back. ... We'd lie in bed at night and talk about all the wonderful things we were going to do when she got her heart," said Harper. What amazed Harper during those months leading up to the transplant was her daughter's incredible strength of spirit. She'd always called Katherine an "angel" for her caring manner and engaging personality that drew people to her throughout her short life, traits she never lost even at the worst times during her ordeal. "I got so much strength from her. She got me through it," said Harper. She recalled in particular an e-mail Katherine sent her just a day before her transplant surgery. When she wrote it, Katherine couldn't have known she was about to get the heart. In the e-mail she told her mom that if she never saw her again she wanted her to know how much she loved her and realized "how hard this has been for you." Harper said she opened the e-mail a couple of days after Katherine had her transplant, after which she never regained consciousness. "She wrote that not knowing she would ever see me again, maybe she did have a sixth sense,"said Harper. "The timing of that e-mail, it was a gift to me" During their stay at Ronald McDonald House, the pair met several other families with kids whose lives hung in the balance as they awaited a new heart, lungs or other organ. "For kids to have to wait a year, 14 months, two years, it's just terrible," said Harper. "It's hideous. You're watching your kid go downhill every day ... it kills you inside." Although their own five-month wait was excruciating, Harper conceded, "That's not bad because there are kids who die waiting. "Due to the trauma her body endured, none of Katherine's organs could be donated and Harper said she's telling her story to help make sense of her daughter's death. And Harper is confident that if her daughter had pulled through, Katherine would be the one talking to the press about organ donation. "She would have been proud to do it. We would have done it together." By MICHAEL JIGGINS To read Catherine's Story click here
To see more photos from the visit, click here.
Hello,
During the second week of March David and I will be visiting Toronto Sick Children's Hospital so we can meet first hand some of the families we are currently helping as well as the Social Workers on the front line who are invaluable with their help. We will post some pictures of the visit as soon as possible. Read Lynne's Update archives - click here.
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The heart Katherine waited five months for and received in a transplant on Feb. 17 wasn't the cause of her death, stressed Harper. 
