Savi

Savi‘s first six weeks of life were problem-free, but things changed quickly after her mother noticed a yellow tinge in her daughter’s eyes. Savi had also stopped gaining weight, so her family booked an appointment with a local paediatrician to have her checked.

At 8 weeks old, she was diagnosed with biliary atresia, a rare disease of the liver that affects only infants. The condition causes the bile ducts inside and outside the liver to become scarred and blocked, preventing the flow of bile into the intestine (where the body disposes of it). This means bile builds up in the liver and damages it.

“It was such an utter shock when Savi was diagnosed, as she was such a healthy newborn, it really came out of nowhere” Savi’s mum Pavi said.

“She went downhill very fast after the diagnosis.”

Just 48 hours after the diagnosis, Savi’s entire body turned yellow (jaundice) and she had significant symptoms of advanced liver disease.

Savi and her family travelled from their Airlie Beach home to the Queensland Children’s Hospital in Brisbane where she underwent a Kasai procedure (or portoenterostomy) which involves removing the problematic bile ducts outside the liver, and attaching the small intestine directly to the liver so that bile can drain away from the liver.

The procedure was a success, but it would be a temporary measure as doctors confirmed that Savi would ultimately need a liver transplant and she was thoroughly assessed and subsequently added to the Paediatric liver transplant waiting list.

“I had never seen a kid as sick as this, no one in our family could even imagine someone being as sick as Savi was.” Pavi said.

At one stage during her admission, Savi became so unwell with influenza (flu), she needed life-support to help her breathe and keep her blood circulating. It also meant she had to be taken off the transplant waitlist until she recovered from the infection.

“At this point we were told that Savi only had a month or two left if she didn’t receive a liver transplant,” Pavi said

“All I could do was pray for a miracle because I just didn’t know if she would ever get better.”

In early 2019, the family’s prayers were answered when a donated liver became available, but the surgery would be one more formidable challenge for now 10-month-old Savi to face.

“At this stage, Savi was quite sick – she did not have the best pair of lungs and she was very underweight.”

“Because she had lost so much weight, the donor liver was too large and had to be resized, which delayed the surgery.”

Despite this hurdle, the 10-hour transplant operation was ultimately a success and Savi was able to go home a month later.

Now, 3, Savi is healthy and living as normal life as she can. She still needs blood tests every 3 months, and sees the transplant surgeons every 6 months to check her new liver is healthy and functioning like it should.

“Savi is a little behind in her speech and has support from a speech therapist but otherwise she’s an active little girl.”

“She loves being able to go to swim classes, and being able to interact with other kids more – and she’s looking forward to starting kindy next year.

“Slowly but surely she is going to thrive, I just know it.” Pavi said.

“We are so grateful to the donor and their family and would encourage others to register as an organ and tissue donor as it can give life to someone.”