Indi’s invaluable gift
Little Indiana, known as ‘Indi’, enjoys the simplest pleasures of life. Her weekends are spent on beaches in the Central Coast collecting seashells, starfish and rocks in her favourite PJ Masks bucket and she adores nothing more than roasting pink marshmallows on family camping trips.
Indi was well enough to be discharged home to a very excited big brother, two-and-a-half-year-old Jayden, newborn Indi just wasn’t getting better.
“Being my second baby, I knew something wasn’t right. Indi was falling asleep during feeds and still had a yellow-ish complexion that started turning green,” said Lee.
The young family never could have imagined that just a few days later, their doctor at The Children’s Hospital at Westmead would confirm the devastating diagnosis of Biliary Atresia.
Biliary Atresia is a liver disease that blocks the ducts that carry bile from the liver to the intestine causing scarring and damage to the liver, this rare disease affects 1 in 15,000 – 20,000 births world-wide .
“We had never even heard of the disease, let alone knew anybody with it. It was completely unexpected and a scary time,” recalls Ryan.
On day 26 of her life, baby Indi had an operation called a ‘Kasai’ procedure, a common first step in managing Biliary Atresia. It’s hoped to restore bile flow by removing the blocked ducts and connecting the liver to the small intestine.
Unfortunately, after a long six weeks of waiting, the operation didn’t show the results they hoped for, and the only option left was a liver transplant.
Seeing your baby so unwell, connected to so many wires and drains was heartbreaking. Our main source of comfort was the specialised nurses on the Clancy Ward, who knew everything about Indi’s condition. She was in the best possible hands.”
At just five-and-a-half months old, before she ever learnt how to walk or crawl, Indi was fighting for her life. She was feeding through a nasal gastric tube and her belly was very swollen due to a build-up of fluid. Time was running out and the family were chasing every option, including tests for Lee to become a liver donor.
Thankfully, Indi’s family and medical team received the call they were all hoping for – she had a donor liver.
“It was so surreal. It had been something we were all waiting for. It didn’t actually hit us until the operation happened. Every day, we recognise how lucky we are to have received this gift," says Lee.
Indi’s recovery post-transplant was a roller-coaster, but thanks to the generous support of Leaping Livers Lapping the Lagoon fundraisers like you, Sydney Children’s Hospitals Foundation was able to help fund a Music Therapist who regularly brightened Indi’s day.
“It was so lovely to see Indi respond and smile to the sound of music. When your baby is so sick, you hold onto these special moments and eagerly wait for the next giggle. We both loved these sessions,” recalls Lee.
Now, over two years later, Indi is doing remarkably well. She does still need to take immunosuppressants, and will for the rest of her life, but she is otherwise living like any other three-year-old girl.
Looking back, the family are incredibly grateful for the extraordinary care the Liver Transplant Unit provided and are thrilled to give-back as this year’s patient ambassadors for the Leaping Livers Lapping the Lagoon event, taking place on Sunday 23 July 2023.
“It’s really important to us to support Leaping Livers because the Unit essentially gave Indi her life and looked after her while she was sick. We want to be advocates for organ donation and bring awareness to the disease we knew nothing about,” says Lee.
For some kids, childhood is far from what it should be. Instead of playdates there are appointments. Instead of sleepovers there are stays. No child like Indi should ever have to go through liver disease, but those who do deserve our all.
Alana's Story
When Alana became unwell just before her fourth birthday, her parents had no idea how serious it would be. But in a matter of days, their little girl, who had never had anything more than a cold before, was diagnosed with Oxalosis and Primary Hyperoxaluria – a condition that until that day, they had never heard of.
The rare metabolic liver condition means that Alana’s liver is missing the vital enzyme needed to control the production of oxalate in the body. Without this enzyme, oxalate is produced at dangerously high levels, depositing crystal like stones in the kidney leading to life-threatening damage of the kidneys.
For Alana, by the time she was diagnosed, the oxalate had already caused significant, irreversibly damage. Her kidneys were only functioning at 30% of their normal capacity and her parents were informed that because of the damage, she would likely need a kidney transplant in the future.
The toxic levels of oxalate in her blood also meant there was a risk her condition could cause damage to her heart and retinas and weaken her bones.
Alana was immediately put on kidney dialysis at The Children’s Hospital at Westmead, five hours a day, five days a week to help keep her kidneys functioning but with no cure for this devastating condition and in order to save her other organs, Alana needed a new liver.
“In just a couple of days our life was turned upside down. We had to learn that our beautiful and healthy looking girl was not very healthy at all,” Alana’s Mum, Jinan said.
“It was very hard to believe that this was happening in her, she was in hospital almost every day for dialysis, Alana had to drop school and I had to leave my 11month old baby behind everyday to be by her side.”
While Alana spent roughly nine weeks on dialysis, she only spent 25 days on the liver transplant wait list before her family received the news they had been so eagerly waiting for.
“One day, while Alana was on the dialysis machine, her kidney doctor delivered the news. Her doctor was so excited and happy for her that he wanted to deliver the best news in person.”
“That day, we didn’t go home, we stayed in the hospital and the next morning Alana was transplanted, she finally got a new liver.”
Since her transplant, Alana is doing better than ever. She no longer needs to be on dialysis, her appetite has returned and she is meeting all the milestones of a normal four-year-old girl.
While Alana still has a long road ahead of her and will need another transplant in the future, her liver transplant gave her back her childhood – a gift her family could not be more grateful for.
“We cannot be grateful enough for the amazing generosity of the donor family. I think of them every day, their decision gave our little girl her life back. It gave her back what everyone else takes for granted,” Jinan said.
“Organ donation not only saved our daughter's life but maybe mine too because I don't know what I would've of done without her.”
Alana has been recovering well and adapting well with liver clinic appointments and blood tests. She had a rejection when she was in year 2, three years post transplant, she received a treatment in the hospital using steroids and she recovered well. She is now receiving close check-up’s due to her kidney inflammation. Otherwise, she is very happy and energetic. She enjoys all sorts of sports in and outside school.
