Transplant has Aila leaping for her dreams

Having spent more than a decade in and out of hospital, 12-year-old Aila has always dreamt of becoming a nurse. Now a life-saving gift has made it possible for her to fulfil that dream.

Aila was first admitted to the Children’s Hospital at Westmead when she was six months old, where a blood test uncovered a problem with her liver.

A liver biopsy taken shortly after her first birthday confirmed she had an autoimmune liver disease. Aila’s immune system was attacking her liver and bile ducts, resulting in cirrhosis - permanent scarring of the liver.

Unfortunately, there is no cure for Aila’s condition. The only option is a liver transplant.

Aila’s liver continued to function and she remained well until she was 11 years old, when she developed Hepatopulmonary Syndrome (HPS). This is a rare lung complication of the liver disease that caused her to be low in oxygen and breathless.

"HPS causes dilation in blood vessels through the lungs. As a result, there is reduced amount of oxygen able to be transported through the lungs into the bloodstream which causes hypoxia (a lack of oxygen to the body)," Dr Michael Stormon, Head of Gastroenterology, said.

"There is no other treatment for this, the liver transplant needs to be done early before the oxygen levels drop too low." 

Although her family always knew Aila would need a liver transplant at some point, the diagnosis came as a huge shock and they feared what the future may hold.

Aila was placed on the liver transplant list at 11 years old. Earlier this year, her family received the call that would change their lives.

“Aila was becoming very tired and breathless whilst on the transplant list. We were so relieved, and grateful, when the call came through that they had found a liver and her surgery went ahead,” Lorna, Aila’s mother said.

Despite the anxious wait for a transplant, Lorna said the skill and dedication of the Liver Transplant team made them feel like Aila was in the very best of hands.

“We had a very positive transplant experience and Aila has had a very good recovery. She received the very best of care from everyone involved,” Lorna said.

 “We are so grateful to all of her nurses and doctors, and especially to the family who made the heartbreaking decision to donate their loved one's organs.

“Someone’s tragedy has given us our daughter’s life back – there is not enough thanks in the world to express how much this means to us.”

Aila is now three months post-transplant, she is feeling so much better and getting back to living life to the full again. Although she will still need ongoing treatment for inflammatory bowel disease, which often occurs in conjunction with her type of liver condition, she has had an incredible outcome.

With a bright future ahead, Aila is looking forward to returning to school and pursuing her dream of becoming a nurse, a nod to all those who cared for her.

“My hope for the future is to become a nurse on Clancy Ward. The nurses there took such great care of me so I want to be just like them. I also can’t wait to start High School next year, join clubs and make new friends,” Aila said.

“For anyone on the waiting list - your time will come when it's right. Never give up because you are unwell, it doesn't mean you should stop doing the things you love.”

This Sunday, 24 July, Aila and her family are supporting the Sydney Children Hospitals Foundation’s Leaping Livers Lapping the Lagoon to help raise awareness and funds for the Liver Transplant Unit.

“There needs to be more awareness of liver disease in children and that there are children waiting for organ donation.  We are so happy to support Leaping Livers Lapping the Lagoon in doing this and to thank all those that looked after Aila,” Lorna said.

The Liver Transplant Team are excited to see Aila again as she walks around the lagoon, a feat, Dr Stormon said, would have been impossible three months ago.

24 - 31 July marks Donate Life Week, a time to not only consider registering for organ donation but also to have the important conversation with your family. Your decision may help save a life like Aila’s. Visit www.donatelife.gov.au for more information or to register.