New liver gives Charlie a second chance at life

At just nine days old, newborn Charlie Harrold’s life started on a trajectory no one expected when a routine heel-prick test came back positive for maple syrup urine disease (MSUD), a rare condition that culminated in a liver transplant when Charlie was just four years old. 

MSUD is a genetic disorder where the body can’t properly break down proteins which, in extreme cases, can lead to brain damage.

Charlie’s mum Alaina said the first four years of Charlie’s life had been a rollercoaster.

“From the time he was diagnosed, Charlie was on a strict diet of special formula every three hours,” she said.

“At five months old he received a percutaneous endoscopic gastrostomy (PEG), and at two years old he had a port put into his chest.

“We had to fly to Brisbane regularly, and were admitted to hospital for a week at a time for every little cough or cold; the older her got, the more often he got unwell and every time he got unwell there was a risk of brain damage.”

Alaina said the decision to put Charlie on the transplant waiting list was a difficult one.

“Initially we planned to manage Charlie’s MSUD through diet and a transplant wasn’t even on our radar; however, it became clear after a few years that he had no true quality of life so in January 2012 Charlie was placed on the transplant list and he and I moved to Brisbane to wait.”

Just five months later, Alaina received the call that changed their lives.

“Charlie was four and a half when he had the transplant, and thanks to that gift he has been able to lead a relatively normal life,” Alaina said.      

“He is now 12 years old and while we still have regular blood tests and monitoring appointments, Charlie has been able to go to a mainstream school, which he never would have been able to do without the transplant.

“Every year we celebrate the anniversary of Charlie receiving his transplant; we have a party and a cake.

“We got a new beginning. It gave him, and our family, a new life.” 

Townsville Hospital and Health Service donation specialist nurse coordinator Meagan Baldwin said Charlie’s story showed what a life-changing gift organ donation was.

“106 Queensland organ donors saved 300 Australians in 2019 with one organ and tissue donor able to save the lives of up to 10 people,” Meagan said.

“While it’s important to register as a donor, it’s also vital to have that conversation with your family so they know your wishes.

“We know that nine out of 10 families proceed with donation when their loved one has signed on the Australian Organ Donor Register and talked about it.”

Alaina said she would forever be grateful for Charlie’s donation.

“I try to promote the benefits of organ donation wherever I can, and encourage everyone to register as an organ donor,” Alaina said.

“When someone you love more than anything has been given a second chance you feel like there’s nothing you can do in return; someone has given us life.

“Our whole family will be forever grateful.”

To register as a donor visit https://donatelife.gov.au/register-donor-today.