When Shani Sam found out her firstborn was seriously ill at just two months old, her first thought was that it must be cancer.
Instead, little Madeline's jaundice and low weight turned out to be caused by something equally devastating but much more rare: Biliary artresia, a birth defect of the liver that results in having blocked or simply no ducts that link to the intestines. About one in 10,000 babies are born with the disorder for which there is no known cause or cure.
The doctor told Sam that without an organ transplant, her daughter would soon die.
Since there aren't any children's organ transplant surgeries performed in B.C., other than for kidneys, Madeline's parents had no choice but to pack up and leave for Edmonton, where they could only wait and hope.
With time running out, the doctors suggested Sam get tested to see if she might be able to donate part of her liver - an inferior second option that was risky but maybe the only chance at saving Madeline's life.
But then a call came just a week before the scheduled surgery to let her parents know a matching donor had been found.
"You can imagine, I was so shocked," said Sam. "It's really hard to describe the feeling because you know your child isn't going to make it if she doesn't get an organ, but you also know that somebody else has lost someone important in their life to make that donation. So, it's a very crazy feeling going into surgery, knowing all that."
The operation was a success, and after four months in Alberta, the Sam family came home just before Madeline's first birthday.
That was seven years ago, and today the Grade 2 student is getting through life "with flying colours," according to her mom.
She enjoys school and playing with her two younger sisters.
She has to take medication twice a day, and will have to for the rest of her life, to prevent her body from rejecting the donated organ, but Sam says Madeline has no problem with the routine and is well aware of its importance.
Being an infant when she received her new liver, Madeline's understanding of the experience is limited.
For her parents, however, that tenuous first year of their daughter's life will never be forgotten, and the support they received from the Children's Organ Transplant Society will always be cherished.
On the day Madeline was diagnosed at B.C. Children's Hospital, Sam met Debbie Bielech, founder of the B.C. charity that supports children who receive organ transplants or are waiting for a transplant, and their families.
"We exchanged phone numbers and she said, 'Give me a call if you need to talk,'" said Sam. "I'm not usually the type of person to call up a stranger, but I really felt like I needed to talk to someone."
Bielech started the society in 2001, a year after donating part of her liver to her son to save his life when he was eight months old. She said after going through the experience, she realized the emotional and financial burdens were huge, yet there was no support group in B.C. for families like hers.
She discovered that while many people are aware of organ transplants for adults, not as many realize that children and even babies can be in need of an organ transplant.
At any one time, there are between 120 and 130 kids on the waiting list for a life-saving organ donation in B.C., and this affects these children and their entire families, Bielech noted.
"It's really important that people sign up and bring awareness to the transplant world in the youth side," she said. "We hear a lot about the adult side, but much less about the youth, and these families really need support. You know, one parent could be in Edmonton waiting for a heart for six months. You've got one parent working, another one can't; the financial burdens are huge, the emotional tolls, you can't even put a dollar figure on it. Not all families survive through it all, and then there's the effects on the siblings of having a sibling that's chronically ill."
The society is based in Richmond, but serves families all over the province, providing ongoing educational, peer and financial support, and helps send kids to camp.
The society also hosts biannual events where families can support each other and parents of children who are waiting for an organ can see that transplants work.
"It's really important to see that these children go on and have a vibrant life and contribute to society in many different ways," said Bielech.
Another mandate of the organization is to work with the B.C. Transplant Society to raise awareness about organ donation.
April is Organ and Tissue Donor Awareness Month, and to mark the occasion, the children's society is organizing a golf tournament on May 23 at the Quilchena Golf and Country Club in Richmond in support of B.C. transplant children and their families.
Prizes include four trips and a $50,000 grand prize.
For more info or to register for the golf tournament, visit www.childrensots.org. For families like the Sams, organ donation offers hope for their child's future that can only be found in receiving a priceless gift from a stranger.
"At least 95 per cent of our kids (who have had transplants) wouldn't be here if it wasn't for the gracious act of the people that donate their organs," said Bielech.
To register to be an organ donor, visit www. transplant.bc.ca.
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