Resilience is a word that’s thrown around a lot these days, but as DEBORAH O’FERRY reports, a Macarthur couple found out the hard way how important it is in life, especially right now.
In August 2019, Tara and Ryan Ladd of Cobbitty, pictured above, took their three-week-old baby Ari to the GP for a suspected cold.
But their doctor noticed that Ari’s belly looked a little yellow and ran a precautionary blood test.
Within days Ari was in theatre at Westmead Children’s Hospital.
They confirmed he had a rare condition called Biliary Atresia, which scars and blocks the bile ducts, damaging the liver.
It occurs in about 1 in every 20,000 births and he underwent a Kasai procedure – an eight-hour open surgery which connected his small intestine to his liver to drain the bile.
It is performed at Westmead about nine times a year and has an equal rate of long-term success, temporary success and liver failure.
Ari had no complications and this gave Tara and Ryan hope that he’d be okay. But three months later, Ari’s liver stopped clearing bile.
Ari had a liver that would not be expected to last two years and plans began to prepare him for a liver transplant.
Their days were quickly filled with blood tests, meetings with surgeons, specialists, counsellors and social workers.
Tara and Ryan say that the conversations around the risks and implications were confronting, including the “Plan B’’ which would result in Tara becoming a sudden living donor, but they say they clung to the success rates.
In March, while people were panic buying toilet paper, Ari’s placement on the transplant list was paused. He had contracted two viruses and the excess fluid in his belly caused two hernias.
He required another operation and because of the Covid restrictions of a one parent stay, Tara and Ryan began alternating days and nights to be with him.
His recovery brought them relief to be active on the transplant list, but they also began the emotional journey of knowing that someone else needed to lose their loved one for their baby to live.
That day came in the peak of the pandemic.
The Ladds received a phone call that would change their lives: “I’m calling from the liver transplantation department at RPA. We have a liver for Ari,’’ they were told.
Ari was the first liver transplant patient during the Covid restrictions when he attended surgery the following morning.
Eleven excruciating hours later the Ladds got the call to say that the surgery was a success and that Ari’s new liver was already working.
With relief, they watched the yellow start draining from his skin. In three weeks, they were back at home.
Weekly bloods monitored his progress, but each week he got healthier and cheekier. Being able to process food, Ari progressed from the 10th weight percentile to the 65th in just ten weeks.
Ari is now immunosuppressed for life and there will always be precautionary things the Ladds will need to do, like mandatory hospital stays if his temperature goes over 38.5 degrees; but his life has been saved.
Tara and Ryan have only praise for the support they received from the hospital and Leaping Livers.
“Without the aids they’d fundraised for, Ari would have experienced so much more discomfort and interference,’’ the couple said.
“And we also appreciated the assurance at 3am, the hugs, the laughs and sincerity and the hospital accommodation.
“Ari has taught us what resilience looks like.’’
The staff at the Children’s Hospital need help to support more families like the Ladds. As part of Donate for Life Week (July 26 – August 2) they are raising funds through a virtual July event called Lapping the Lagoon. Visit www.leapinglivers.org.au to find out more.
If you haven’t already, register and talk to your family about organ donation, because it’s kids like Ari that are waiting on the other side. https://donatelife.gov.au .