“They gave me life”—Natalie’s Story
Natalie and her twin sister were born a few weeks early, but otherwise healthy. The first weeks of life at home were a chaotic but happy time as Natalie’s parents learned how to deal with the demands of twins.
It wasn’t long however before Natalie stopped growing and gaining weight. Her stools turned white, and her eyes and skin started turning yellow. She vomited after every feeding, so her parents fed her twice as often as her sister—but she still lost weight. Desperate for answers, Natalie’s parents repeatedly took her to their family doctor who kept insisting she was fine.
At nine weeks old, a midwife saw Natalie’s very jaundiced skin, and she was immediately taken to the children’s hospital near her home. After multiple tests, scans and procedures, she was eventually diagnosed with biliary atresia, a condition that affects the bile ducts in the liver and is the leading cause of liver failure in children and youth.
Only a few days later, Natalie underwent a lengthy operation called the ‘Kasai’ procedure which helps re-establish bile flow to the liver. When successful, the Kasai allows a child with biliary atresia to avoid needing a liver transplant—often for several years.
Fortunately for Natalie, the Kasai worked. After three weeks in the hospital, she was able to go home and her health dramatically improved. Life finally became ‘normal’; something her family gave up thinking was possible.
For the next six years, Natalie’s life was like that of any other kid except for annual doctor’s visits, blood tests and other procedures to monitor her health. She was strong, healthy and had no fears about her future.
All that changed when Natalie turned 13, and she began to suffer complications brought on by her disease. Portal hypertension (increased blood pressure in the veins which can cause internal bleeding) and an enlarged spleen triggered severe abdominal pain. She had to start taking multiple medications to keep her body stable and to manage her symptoms.
“Every day was a struggle physically and mentally,” says Natalie. “But, I was surrounded by such incredible support from my doctors and nurses.”
Eventually, Natalie’s health deteriorated to the point that she was placed on the waiting list for a liver transplant. Throughout the six months Natalie spent waiting for a liver, her immune system was so compromised that she was often admitted to hospital with infections her body could not fight on its own.
Thankfully, Natalie received her liver transplant and now, the 19-year-old credits her experience living with biliary atresia for making her into the person she is today.
“My health declined over many years,” says Natalie. “The struggle and lack of health became and felt normal. It wasn’t until I was post-transplant that I realized just how sick I had been. To have health is to have freedom”.
She recalls that even the act of breathing felt easier just a few days after her lifesaving transplant. She no longer felt the energy-draining pain and the fear of dying waiting for a liver that plagued her before her transplant. She credits her newfound strength and outlook to her liver donor.
“I have thought about my donor & donor family often and have continued to feel overwhelming gratitude for the gift they have given me,” says Natalie. “Together through their generosity, selflessness and bravery in the face of such tragedy, they gave me life.”
Throughout her illness, Natalie has been an advocate and volunteer for the Canadian Liver Foundation. She’s offered herself as a critical resource for families coping with children with liver disease, often answering questions and easing their concerns.
“I will never forgive biliary atresia for taking away my health,” says Natalie. “More importantly, I’ll never forgive it for taking away some of the most precious souls I’ve had the privilege of knowing. But although it sounds odd, I am quite thankful because, without this disease, I wouldn’t be living the life I know and love today.”
Natalie strives to continue making the world around her aware of biliary atresia and is determined to help be the reason that a cure is found.
As if her story could not defy any more barriers once set forth by her liver disease, Natalie entered and won three gold medals at the 2018 Canadian Transplant Games in Vancouver—just 15 months after her lifesaving transplant. She has currently applied to a nursing program for the fall of 2019 and continues to possess an unwavering passion for giving those with illnesses just like her the best care she can provide.
Feel inspired by this story? Head on over to our volunteer page and find out how you can get involved with the CLF.