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.
After her blood tests came back within normal range, the family were discharged and sent home to a very excited big brother, two-and-a-half-year-old Jayden. Despite all of their love and best wishes, 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 – a liver disease that scars and blocks ducts that carry bile from the liver to the intestine. The rare condition is believed to affect 1 in every 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.