Looking at Zoe Smith sitting across the kitchen table with her parents, it’s hard to believe the positively glowing Corowa teenager was not so long ago very ill and in desperate need of a new liver.
The Free Press caught up with the 16-year-old and her parents, Neil and Jodie, to share Zoe’s remarkable story which started when she was first born.
“We knew she was yellow and that there was something wrong, but we did not know the extent of it until she was about nine weeks old and the local pediatrician told us to go to Melbourne to see a specialist,” Neil said.
“They told us to drop everything and get her to Royal Children’s Hospital.”
That was the night of the September 11 terrorist attack and the couple vividly remember their nervous wait for Zoe’s tests while sitting at the hospital and watching the 9/11 tragedy unfold live on the television.
After many tests doctors diagnosed Zoe with biliary atresia, a rare disease causing bile to be trapped inside the liver and eventually organ failure.
She underwent a Kasai procedure that involved a segment of her intestine being sewn directly to her liver so she had some form of biliary system.
Neil explained that almost half of all infants who have the procedure require a liver transplantation before the age of five.
“They generally only last about two years and that’s if they take,” he said.
“If the operation doesn’t work then you need a liver transplant straight away.”
Zoe’s parents were happy to see their daughter soldier on for 16 years.
“Zoe’s one of those special stories,” Jodie said.
However, during a family holiday to Bali last year Zoe’s parents noticed her skin was “more yellow than usual”.
Once back at home they took Zoe to the doctor and it turned out she had some growths on her liver.
Tests were inconclusive at first, but they put Zoe on the active waiting list for a transplant and the family were told they could return home.
Life went on until, completely out of the blue, Zoe went into atrial fibrillation which was unrelated to her liver condition.
Zoe was flown to Melbourne and the doctors confirmed she had cancer and needed a new liver.
However, it took five months to get on the donor list as doctors had to fix her heart before she would be considered for a liver transplant.
It was then a further seven months before they got the call that a donor organ had become available.
“It was scary, we just wanted her to be better,” Jodie said.
“Our life was on hold as we waited.”
Neil said it was midnight when they got the call from the hospital.
“That was the most painful thing, just waiting for that call,” he said.
“It was a heavy burden that phone, just waiting for it to ring at any minute of any day.
“It was a mixed emotion; it was excitement and relief at the same time.”
The family left for Melbourne about 1am and dropped Zoe’s 12-year-old brother, Taj, with family friends in Corowa.
“We were talking to each other on the way to Melbourne and asking Zoe how she felt, and she said she was excited and not scared which was great,” Neil said.
“Zoe was really brave through the whole process.”
Zoe’s parents explain they had half packed for the hospital visit weeks in advance but said Zoe wouldn’t.
Zoe lets out a laugh when her parents dob her in about the four bags of clothes she wanted to take in the mad rush.
Then, suddenly, three mobile phones start sounding an alarm and Zoe’s parents explain it is time for Zoe to have her medication.
“We all have an alarm set on our phone,” Neil said.
There are up to 50 tablets that Zoe must take every day to keep her healthy and stop her body from rejecting her new liver.
The hope is that within 12 months the medication will drop to just one tablet twice a day for the rest of her life.
Zoe’s parents bought a locket for her birthday, which has the date of her transplant engraved on it.
It also holds her anti-rejection drugs so she can keep them on her if she is out and about.
The family met with the surgeon who would perform Zoe’s transplant back in October.
“Meeting with the surgeon was a game changer because once Zoe met him she told us she was not scared, he just made her feel at ease,” Neil said.
The reality of it all didn’t quite sink in until doctors showed Zoe a photo of her new liver before the procedure.
The operation took just over six hours.
When Zoe woke up she tried to talk with tubes still in her mouth, she wanted to know just one thing – were her eyes white.
“She scribbled some words on my phone and we realised she was asking if her eyes were white,” Neil said.
Zoe, who enjoys sitting in front of her bedroom mirror and experimenting with make-up, explained she had become self-conscious about her eyes that had been a yellow colour for so long, a symptom of her failing liver.
Her parents were happy to report that they were, indeed, white.
Now, back at home in Corowa, Zoe wants nothing more than to return to school where she can see all her friends.
It is hoped Zoe will return to school in October when term four starts or earlier if Zoe gets approval from her doctor.
With her future now in front of her, Zoe said she would like to become a nurse after finishing high school.
“I want to be a liver transplant co-ordinator,” Zoe said.
“I think I would be good at it because I could tell people what it is like to get a new liver.”
Sport is also a possibility now as Zoe experiences the energy of a healthy 16-year-old.
“I want to play football,” she said.
Becoming an organ donor
Zoe is more than aware that her new life was only made possible through the generosity of her donor’s family and says she cannot thank them enough.
“We can never thank them enough for what they have given to Zoe and we want to spread the word about becoming an organ donor,” Neil said.
“We really want people to first of all have a conversation with their family and loved ones about what their intention is and then get onto the organ donor register.
“People have to have a conversation with their family and let them know if they wish to be a donor because just being registered isn’t enough.
“The statistics show only one in five people in Victoria are registered and that’s the worst rate in Australia, so hopefully we can turn this around.
“It does save lives, just look at Zoe.
“Her life has just started because she has never had so much energy.”
Zoe’s journey was documented through a Facebook page that Jodie set up and included daily updates and photos during Zoe’s time in hospital.
The page attracted close to 900 followers after starting with just close friends and family.
“People kept sharing and sharing and it grew from there and was just an easy way to update people,” Jodie said.
“We were even getting messages on our Facebook from people we didn’t know, they just wanted to let us know how happy they were that we were home.
“We really want to thank the whole community and the staff at Royal Children’s Hospital; they were terrific through the whole experience.
“The hospital staff even surprised Zoe with happy birthday banners and cake, they put all the decorations up overnight and we knew nothing about it, it was just remarkable.”
The family also wished to thank Corowa’s Guy Street Cafe which hosted a raffle for Zoe and the Wahgunyah Football Club that funded accommodation for the family during their stay in Melbourne when Zoe was released from hospital but had to stay close by for check-ups.
The family would have stayed at Ronald McDonald House but Zoe had to be in isolation, so they had to rent an apartment.
Neil explained while liver cancer was common in adults; it was rare for a 16-year-old.
The family have been invited to inspect Zoe’s old liver in about two weeks, which has been donated to research with Zoe’s blessing.
“It will be interesting to see what damage happened to her liver,” Jodie said.
“The doctors did some special testing on it and Zoe signed some papers saying she would like to donate her liver to research.”
To join the organ donor list visit