Waiting for an organ is always a harrowing experience, but it’s felt even more so for the families of these bubs.
The logistics of organ transplants have been hampered during the coronavirus pandemic, making the prospect of getting a liver more difficult for little Kayden Perkins and Indigo Chin.
The six and seven-month old babies both have biliary atresia, a rare liver condition that scars and blocks the bile ducts.
Kayden and Indigo both had a kasai procedure which is a common first step in managing their conditions, which leave them unable to sit up at their age or eat properly.
The procedure helps prolong life but unfortunately the liver condition in both children deteriorated and they have now been put on the transplant waitlist.
Indigo has been waiting for more than 50 days and Kayden two weeks.
Indigo’s family had to relocate to Sydney from Perth and have been staying at the Ronald McDonald House opposite The Children’s Hospital at Westmead.
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Her parents Tim and Emily said usually they could stay put but because of the pandemic they couldn’t risk missing out on a flight at the last minute if a liver became available.
“The hardest thing was our entire family have had to relocate to Sydney for an indefinite amount of time,” Mrs Chin said.
“Tim is working remotely. She’s holding on. We’re just waiting for that liver but we’re worried she’s going to get to a stage where she’ll get sick.
“The last few months there’s been no movement on the list because of the COVID impact on availability.”
The parents said they wanted to get the message about organ donation out there so their little girl could have a normal shot at life.
“It’s really sad because when they get a distended belly they can’t keep the food down as well,” Mrs Chin said.
“It’s sad to watch. There’s not a lot of activity you can do with her, we just have to keep her comfortable.”
Indigo takes 10 types of medication a day and experiences itching from bile salts accumulating under the skin.
Kayden’s mum Amber Love said her son also experienced severe itching.
“Kayden is constantly scratching,” she said.
“He always has little cuts on his face. He even pulls on his hair because his head gets itchy.
“Because of the disease Kayden has, he’s not able to do normal baby things.”
While Ms Love said watching Kayden get sicker was hard, she was trying to stay positive.
“He gets sicker pretty much every week we go back to hospital but I just kind of take every week as it comes and try not to think too much about things,” she said.
This Friday is Jersey Day which encourages the community to wear their favourite sporting jersey to school or work to show their support and start the conversation with friends and family about organ and tissue donation.
There are about 1600 Australians currently waiting for a transplant.
Jersey Day was inspired by the story of 13-year-old Nathan Gremmo who died after crossing a road in 2015.
His organ donation saved the lives of six people, including five young adults and a baby.