Organ Donation – the two sides of this life changing gift

This week we celebrate the tenth annual Donate Life Week. Across Australia, tens of thousands of lives have been touched by organ and tissue donation. This includes the lives of people who receive transplants and their families, as well as the courageous individuals and families of those who make the lifesaving decision to donate. It’s also a time dedicated to promoting the importance of having the discussion about organ donation with your family and friends.

Many children across our Network have had their lives saved thanks to organ donation and this week, are encouraging the community to take the time to talk about organ donation with friends and family. Read some of their stories below.

Capreece’s lifesaving gift

At 14 years old, Capreece was a bright, energetic, high spirited teenager known for her beautiful smile. She loved playing sport, snowboarding and was adored by her parents Jacqueline and Aaron, brother Clinton and sister Charli.

Tragically, in 2017, Capreece passed away suddenly from Acute Necrotizing Encephalopathy, a rare brain disease triggered by the flu. Initially admitted to Wollongong Hospital, she was flown by helicopter to the Children’s Intensive Care Unit at Sydney Children’s Hospital, Randwick, where her devastated parents were told that she was not going to make it. Her heartbroken family had only five days with Capreece from the onset of her illness to when she passed away.

Despite the total devastation and loss Capreece’s family experienced during this time, her mum Jacqueline says they knew straight away that they wanted Capreece to be an organ donor. “Capreece was known for being an incredibly kind and generous person, because of this we just knew it was the right thing to do.”

Jacqueline adds she’d had the conversation, and discussed organ donation with her family in the past. Capreece knew her mum was a registered donor and had expressed that’s what she would want as well.

While the day Capreece’s family wheeled her bed up to surgery for the very last time for her organ donation to commence was the most difficult moment for the heartbroken family to endure, it was also a moment they will never forget. “This image, this moment will never leave us”, Jacqueline says. “The nurses and doctors lined the walls, and we knew everyone involved respected us and were so grateful for our family’s decision to donate. We knew it without them saying a word.”

Capreece was able to donate four of her organs: lungs, both kidneys, and pancreas. Jacqueline says her family takes so much comfort in that fact that that their precious Capreece was able to save the life of three strangers, “Knowing she lives on in others is amazing, and warms our hearts.”

Double the difference – how organ donation saved these siblings

13-year-old Jayden and two-year-old Lorelei share a special bond. Not only are they brother and sister, but they have also both had life-saving liver transplants. 

Although Jayden and Lorelei were born 10 years apart, they were both born with the same rare metabolic condition, Ornithine transcarbamylase disorder (OTD), that left them relying on a liver transplant to save their lives.

For Jayden, OTD caused major health issues from his first day of life, including seizures and jaundice. It wasn’t until he was four weeks old that he was able to leave hospital, and he required around the clock care at home to manage his condition until he was old enough to receive a liver transplant. 

At six months old, Jayden and his parents flew from their home in Western Australia to The Children’s Hospital at Westmead (CHW), the paediatric arm of the Australian National Liver Transplant Unit, where they began the anxious wait for the phone call that would change their lives. But Jayden’s condition began quickly deteriorating quickly - the need for a liver becoming more urgent by the day. With time running out, his dad, Bryson, began the work up process to donate part of his liver to Jayden. 

It was just two days before the surgery was scheduled for both Jayden and his dad when the family received ‘the call’ – Jayden had received a donated liver, and soon after underwent his lifesaving surgery.

“Jayden was living on borrowed time, and for him to be given the gift of life from a special donor is something we will be forever grateful for” said Jayden’s mum, Alannah.

More than a decade later, Alannah and Bryson found themselves in a very familiar situation, with their newborn baby, Lorelei, diagnosed with OTD at only a few days old. In general, females diagnosed with OTD are unaffected, but Lorelei became very unwell at 10 months old - it was a sign her liver was failing. She was flown to CHW, ventilated and in an induced coma, where the family once again met with the liver, metabolic and surgical teams, and began the second wait for the gift of life.

Lorelei had been on the transplant list for three months when the family once again got ‘the call’ that would save their baby’s life. 

“Before her father could even board the next available flight from Perth to Sydney, Lorelei was placed in the trusting hands of the remarkable team at CHW to receive the gift of life from a family who made a selfless decision that has forever changed our baby girl’s life,” Alannah said.

While all families of children who have received transplants are passionate about organ donation, Jayden and Lorelei’s parents now had double the reason to be grateful.

“Being told your babies’ only hope of survival is a transplant is an emotional rollercoaster. You go through both elation for your critically ill child when they receive the organ they desperately need, as well as intense compassion for the donor family. There are not enough thank-you’s in the world to express our deep gratitude, the donors and their families saved our children’s lives,” she said.

As a small token of their gratitude, the Donkin family are participating in the virtual Leaping Livers Lapping the Lagoon, an annual fundraising walk to help raise money for CHW’s Liver Transplant Unit who helped their family through the transplantation journey twice. All funds raised will help with Liver Unit continue the important work that they do to help other children like Jayden and Lorelei.

On the other side of the organ donation journey is Jodi Pasfield, Donation Specialist Nurse for SCHN.

In her role, Jodi meets with families as part of end of life care in ICU to provide information and support about organ and tissue donation. It’s an extremely tough conversation each and every time, but it’s a vital one, and it gives families to opportunity to make the decision that is right for them. 

“Families are so generous and brave when organ and tissue donation is being considered, especially when it may not have been something they’ve discussed before,” Jodi said. 

“I feel incredibly privledged to work with, and support families during what is the hardest point in their life. At this difficult time, they give the gift of life to another family, it’s nothing short of inspiring.”

Families play a crucial role in organ donation because they are asked to make the final decision of whether their loved one wanted to be a donor. This can be a tough question to answer, and answering it on behalf of a child is gut-wrenchingly difficult, but having open discussions about organ donation in the home, and registering the decision can help.

“In 9 out of 10 cases, families agree to donation when their family member has registered as a donor. Talk to family and friends about your wishes, and ensure you register your decision,” Jodi said. 

It’s an unimaginably difficult decision at a devastating time, but it could help save another life. 

Jayden and Lorelei aren’t alone in receiving the phenomenal gift of a life saving organ. Many children across Sydney Children’s Hospitals Network benefit from the generosity and selflessness of organ donors and Donate Life Week marks the perfect opportunity to discuss organ donation with your family.

When asked what she would say to people considering registering for organ donation, Alannah’s answer was simple – “Please do!”

“It’s so simple to register and the impact that choice can have on so many families is literally lifesaving,” she said.

“We are so grateful that post-transplant, both Lorelei and Jayden are flourishing, and it’s all thanks to the donors and their families.”

It's Donate Life Week, and you could help save a life. To register your decision visit www.donatelife.gov.au