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Parents understand the addition of a new baby to the family will cause changes and stress, but for Laurie and Clark, the birth of their daughter Kyla altered life in an unimaginable way.
Kyla was born on March 12, 1991. Shortly after her parents realized she was not well. Symptoms included listlessness, vomiting, lingering jaundice and dark urine. To complicate matters, doctors soon discovered Kyla was suffering from congenital heart disease. What doctors didn’t realize was that Kyla was also showing the common signs of biliary atresia, a liver disease affecting the bile ducts.
At nine weeks Kyla underwent the
Kasai
, a temporary surgical procedure in an attempt to restore bile flow and stop the liver damage. “There is a very short window of opportunity to do the procedure after biliary atresia is diagnosed, and luckily Kyla was diagnosed in time to do the procedure.” Laurie says.
Although the
Kasai
kept Kyla alive and gave her the ability to grow stronger, she was still repeatedly in and out of hospital over the next four years for infections and IV therapy. Kyla’s parents and doctors knew her best chance for survival was a liver transplant however the question was, could a donor be found?
By age four Kyla’s health was worsening daily. She couldn’t climb a stair, play or go outside. “It was like sitting on the edge of our seats for two years” says Laurie about the organ transplant waiting period. Finally, a donor was found and Kyla received her new liver just after her fourth birthday. The improvement in Kyla’s health was immediate.
Over the next seven years Kyla’s health greatly improved and the family became active in raising awareness for the need for organ donation and children’s liver disease. Kyla was enjoying a nearly normal life, having dreams of her future. She was extremely social and loved music, playing dress-up, and being a big sister to her two younger brothers.
A new liver essentially cured her liver disease, but Kyla now lived with another health challenge, Immune Suppression. The management of rejection depends on using powerful steroid drugs. As a result, Kyla’s life continued to include doctors, hospitals and clinic visits.
In 2001, when Kyla was in grade 5, her health deteriorated drastically. She was admitted to the hospital in December with a respiratory infection. Despite every effort, Kyla died on February 26, 2002, two weeks before her 11th birthday.
By telling Kyla’s story Laurie and Clark believe their daughter will continue to teach people that liver disease can and does affect children. “The only way to fight children’s liver disease is for doctors and parents to be aware of early signs and symptoms so that early detection and treatment can occur.” Says Laurie. “I’m just continuing the work that Kyla started. Transplants work, but they are only part of the picture. Most importantly, we must fund research to understand the causes of children’s liver disease so we can prevent it from occurring in the first place.”
*see Kyla's commemorative bracelet on page 3 of Jewellery
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