ACT News

Charlie Clode, heart valve transplant recipient, meets infant donor’s family

A chance connection on social media has united two families, who were never meant to meet, after one gave the other the gift of life.

The parents of a nine-month-old baby girl Cailee Ward said a final goodbye to their daughter a year ago after she died from complications from a form of infant epilepsy.

But it was the thought of another parent having more time with their sick child that spurred the family to donate her organs and tissue.

Cailee's parents, Donna and Niel, decided just days before she took her last breath that they would donate what they could.

Their decision was life changing for the Clode family from Canberra. Charlie Clode was born with the single biggest killer of Australian children, congenital heart disease. His body was constantly blue from not receiving enough oxygen.

After the surgery to put in place Cailee's heart valve about a year ago, Charlie, now aged 16 months, turned from blue to pink.

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By complete coincidence, Donna and Niel Ward have now met and become friends with the Canberra family whose son's life was changed from the donation.

Melissa Clode said Charlie had always had the worst diagnoses, but seemed to "miraculously have the best outcomes".

Mrs Clode and her husband Daniel, both senior advisors in the public service, found out at 20 weeks pregnant that their baby would have a congenital heart problem, but they didn't know the extent of it.

Charlie was also born with pulmonary atresia, among other complications.

He's had two open heart surgeries, the second was when he received Cailee's valve.

"He went from a blue-coloured, sick, tired little baby to quite a content, happy baby with a lot of energy," Mrs Clode said.

"It was phenomenal. We expected he would be better, but we didn't realise how dramatic it would be."

To thank the Wards, then unknown to the Clodes, they wrote a heartfelt thank you letter. With it, they posted a Pandora bead with two teddy bears holding a heart.

The legal framework for organ and tissue donation prevents identifying donors or recipients, but it permits anonymous contact facilitated by each state or territory.

But the internet broke down that barrier for the two families, both of whom wanted to find out more about each other.

Each family posted a photo of the letter and the bead on Facebook, and the connection was made by a mutual friend who offered to put them in contact.

The Wards have since met little Charlie at hospital in Sydney, where he travels for treatment as Canberra doesn't have a paediatric emergency unit.

Mrs Ward said she couldn't hold back the tears when she heard Cailee's donation had saved another little person's life.

"We didn't want to imagine another parent having to lose their child, and if we could help even one parent spend more time with their child, it would be worth it," she said.

Mrs Clode said while it was amazing for Charlie to receive a donor heart valve, she wished it didn't have to result from the loss of a loved one.

"I'm very very grateful that they decided in an incredibly difficult part of their lives to make such a generous gesture, but I would have preferred that never happened to them, and they didn't lose their beautiful girl."

​Mrs Clode said she hoped the complacency around organ and tissue donation would give in to meaningful conversations with loved ones, no matter how hard they might be.

"I don't think Australians are great at having those conversations, but we should have them more often. For Charlie, it means he has a life ahead of him."

In 2016, a record 1448 Australians received lifesaving transplants as a result of 503 organ donors and their families.

Join the register today www.donatelife.gov.au