At two days old, Harry was cold, floppy, unresponsive, and had abnormal breathing.
He was diagnosed with the genetic metabolic disease, Propionic Acidemia (PA), a disorder in which the body can’t break down certain parts of proteins and fats properly. This leads to a build-up of toxic substances and can cause a metabolic crisis. Without early diagnosis and treatment, these symptoms can lead to more serious medical problems, including heart abnormalities, seizures, intellectual disability, strokes, coma, and possibly death. For Harry, this meant he would need a liver transplant to survive.
Harry’s parents Anna and Rick, spent 12-months on the waitlist for an organ transplant.
“We had two false alarms. The first time I literally dropped to my knees on the phone as we’d been waiting 10 months on the list,” Anna said.
“The second and third time I was a little bit sceptical, we tried to hold our hope in check and the nurses told us not to get our hopes up on the third call as they weren’t sure it would pan out.
“It was time sensitive, so when we finally got call, we had to get to the hospital quite quickly and there wasn’t a lot of time to process everything.”
While Harry waited on his transplant, he followed a strict diet, being fed at regular intervals every four hours.
“We had to measure everything we gave him to the millilitre, including breast milk. The maintenance was constant, as was the anxiety. We had to stay within an hour from the PICU at all times,” Anna said.
Harry’s liver transplant took around eight hours and he had a difficult recovery. At five days post-transplant he developed jaundice and needed another surgery. Five days later he required a third surgery meaning he was intubated for more than two weeks.
The clinicians tried to extubate Harry multiple times however his airway had swollen due to the length of time he had been intubated. After four weeks of intubation it was decided that Harry would need a tracheostomy.
“Harry’s clinicians were unsure of how long Harry would need the tracheostomy for, it could potentially have been years, but in the end, Harry was lucky enough to have it removed around three months later.”
Harry took his first steps two days out of hospital.
“I’ve often heard it described as a cloud lifting off them when they get their new liver, and it’s exactly what it was like,” Anna said.
“He just started doing all these things he couldn’t do before. Cognitively, he improved so quickly – it was incredible the things he picked up – beyond what we could ever have wished for.
“It’s been life changing for him.”
Harry is going well and improving in leaps and bounds. He loves to read and count, ride his bike and play with cars and trains.
“It was hard to know what he loved before his liver transplant, I think just the effort of life stripped a lot from him, he has so much joy now,” Anna said.
“He’s a very happy little boy. He’s not verbal but is signing and making new sounds and will start school next year.
“There’s nothing that beats giving someone a second chance, or a third or fourth chance at a life that they probably wouldn’t get, if it weren’t for a donor.
“Harry just wouldn’t have this life. He wouldn’t be able to go to kinder, he wouldn’t be able to have a social life, he might not even be here without it.
“There’s nothing more selfless than organ donation. It’s such a gift, and I hope comforting in some way, too, because that person has saved someone’s life.”
Thank you to Anna, Rick and Harry for sharing their story in DonateLife Week. The RCH is a Nationally Funded Centre for heart and liver transplantation, so we know first-hand the enormous impact organ donation has on the lives of countless Australians. To register as an organ donor, visit donatelife.org.au.
