A chocolate Labradoodle puppy fittingly named Makana, or Gift in Hawaiian, rests his head at Natalie Williams’ feet but it’s a phone call the 19-year-old on B.C’s transplant wait list is hoping will come soon that will give her the greatest comfort - the chance at a new life.
“Just the fact that you have to wait is the hardest thing for me,” Williams said. “I just try and be positive about it and think about life after but sometimes it does get to me and other days I’m OK.”
The Duncan girl was diagnosed at nine weeks old with a life-threatening condition called Biliary Atresia. In short, the disease impacts the liver and bile ducts, while an enlarged spleen, weighing 12 lbs, has reduced her lung function and compacted her stomach.
“As soon as we knew she had Biliary Atresia we were told it’s inevitable she is going to have a transplant,” said father Matt Williams, who is a cell guard with the North Cowichan/Duncan RCMP.
A relatively rare disease, the cause is currently not known but it affects one in every 10,000 to 20,000 infants, according to the Canadian Liver Foundation. Upwards of 90 per cent of those suffering from the disease require the transplant before the age of two.
Williams, like almost all others with the illness, underwent surgery as a baby to help her cope as she ultimately waited for the day when a new liver was ultimately required.
Her condition started to decline from the age of 13 onwards with more regular trips to Cowichan District Hospital for severe pain and liver infections.
A team of doctors, social workers and a psychiatrist decided in October she fulfilled the requirements to be put at the top of BC Transplant’s wait list for non-emergencies for her blood type.
Williams knows the statistics on organ donations in BC, such the fact that 95 per cent of the province supports it but only 20 per cent have registered their decision to become a donor.
Currently, according to BC Transplant, 15 liver transplants from deceased donors have been completed in 2017 while another 24 people such as Williams are on the wait list.
“It just kind of makes you sad because your life depends on someone else,” she said. “I don’t really do much because of the symptoms. It does take over your life.”
But if the stress of not knowing when she’ll receive the call and have to rush to Vancouver General for upwards of 10 hours under the knife, it’s also a requirement that the young woman and a parent stay for three months within an hour of the hospital because of the potential complications and weekly blood work.
Her transplant team recommends at least $15,000 be budgeted and none of it is covered by the health care system.
Matt said the RCMP detachment is planning a fundraiser in the near future to help with the ongoing costs and Williams’ twin sister set up a GoFundMe page recently to collect donations.
“This surgery is pretty serious,” Matt said, noting that an uncomplicated liver transplant is only about four hours. “Because her spleen is so big that is what’s going to make it a long operation just to safely get it out.”
Among the list of requirements for a successful transplant match is that the donor be deceased, of the same O Positive blood type and somewhat close in height to Williams who is 6’1”.
“Liver transplants are successful it’s just a matter of if you get the organ on time is the biggest risk factor,” said Williams who lives every day with thoughts that her spleen could rupture or portal vein collapse.
“That’s what I’m most scared of is if it doesn’t come on time and I’m also scared of the actual operation itself because you just never know.”
As a precaution she’s been advised to make a living and deceased will but prefers to think of life post-surgery when she’ll be able to road bike, travel the world and start a family.
Williams was pre-med at Comosun College up until 2015 but her health forced to her abandon full-time schooling and take classes through distance education.
Her hope now is to one day becoming a radiographer.
“She’s been cared for her whole life and she wants to give back,” Matt said.
The young woman also channels her energy into a non-profit she formed in 2012 called Biliary Atresia Awareness & Research, reaching people as far away as the Philippines to educate them on the disease.
“Just to feel healthy is all I want,” she said. “To know I’m not at risk any more and free.”