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Just 36 hours after Maia was born, her parents, mother, Tara and father, Richard, knew something was wrong.
“We noticed she was flat and lethargic, not feeding and found it hard to breath,” explains Tara.
As Maia continued to deteriorate, she was admitted to the Royal Children’s Hospital in Melbourne, where Maia spent the next three months of her life.
During this time, her family were given the news that their newborn daughter had inherited a rare genetic disorder, propionic acidemia, in which the body is unable to process certain proteins and fats properly.
The metabolic condition is so rare that there is only one case every two-to-three years at the Royal Children’s Hospital.
“The doctors told us it was like winning the reverse lottery,” says Tara.
It was a particularly difficult time for the close-knit family.
“Our lives changed forever during those months, as a family we started living at Ronald McDonald house, so we could be close to Maia.
“Maia’s older sister, Luna, aged six, even commuted back and forth with the help of the grandparents, as she wanted to be close to her sister,” she explains.
Maia and her older sister, Luna. Maia was born with a metabolic condition whereby her liver struggled to process the proteins.
As a consequence of the condition, Maia was tube fed and required careful monitoring.
“We had to be really careful with what foods we were giving her, as her liver struggled to process the proteins, meaning she would often vomit after every feed,” says Tara.
“It was so hard for us to watch her struggle, and within herself she wasn’t a happy little girl.”
When she turned one, Maia was placed on the transplant list for a new liver.
“Given Maia’s metabolic condition was so volatile, and she could face long-term side effects such as stroke or heart attack, we made the decision to work towards a transplant.”
In January, just nine months after being placed on the waitlist, Maia underwent a life-changing liver transplant. Her family instantly noticed a change.
She was no longer vomiting after each feed and she had become a happy and animated toddler.
“It was like her entire body was benefiting from the transplant,” says Tara.
After a life-changing liver transplant, Maia no longer vomited after each feed.
While Tara is conscious that there is a still a long road ahead, the transplant has significantly enhanced Maia’s quality of life.
“We now have more freedom to introduce solids, we are confident she is able to tolerate it and eventually she will be able to feed like a regular toddler, and not require overnight feeds,” Tara says.
“We are very grateful to Maia’s donor and feel so blessed that she has been given the best chance at a normal life.”
DonateLife Week (July 26 to August 2) aims to raise awareness of the importance of organ and tissue donation.
To register to be an organ and tissue donor, visit donatelife.gov.au. It only takes a minute.