The circle of life

Life is unpredictable. Sometimes cruel, taking away a loved one without warning; sometimes kind, offering a loved one a second chance. These events are both tragic and miraculous, and separately they are called just that, but when they happen together, these events are called something else – they’re called organ donation.

Every year, hundreds of families experience the cruel side of life, and are faced with the heartbreaking decision about organ donation after losing their loved one. But because of this difficult decision, thousands of families are then able to experience the very opposite, receiving a gift that is truly priceless.

Sebby’s gift of life

For most of ten-month-old Sebby’s life, he was just like any other baby – happy, healthy and full of energy, despite living with a rare form of epilepsy.

Sebby’s condition was controlled by medication and he suffered very few seizures. But in July 2018, his fourth seizure sadly proved fatal. Sebby was just 311 days old.

Sebby’s parents, Edwina and Ant, were heartbroken. Their world had been turned upside down almost instantly – but even during this incredibly difficult time, they were thinking about how Sebby could help someone else.

“When Sebby died, we absorbed the shock as best we could and immediately asked if he was able to share his organs because no parent should have to endure the loss of a child for no reason,” Edwina said.

“While we battled the immense pain of being told our baby had died, we took solace in knowing the pain we felt that day would have been proportionate to another family’s happiness.”

The 24 hours that followed was a whirlwind of activity, with extremely skilled professionals at Sydney Children’s Hospital, Randwick working closely with Sebby and his family to prepare him for organ donation.

When the time came to donate his organs, Sebby’s parents were consumed with sadness, but filled with pride. They knew his medical team had done all they could to save their little boy and now it was time for them to save someone else.

“On the day of his organ donation, we walked him into surgery. The row of doctors and nurses were scrubbed up and solemn as we said the last, hellish goodbye to our beautiful boy.”

“That afternoon we saw a helicopter arrive onto the roof of the Hospital and we like to think that we saw our baby’s life fly away into the sunset, flying hope toward another family,” Edwina said.

While Sebby’s life was undoubtedly one that has been cut far too short, his parents take comfort knowing that someone else is healthy and thriving again, that they have been offered a second chance at life, because of Sebby.

“Seb’s gift gave hope where ours had been lost and we feel so lucky that he was able to offer this precious gift. Our little man died a hero.”

Read more about Sebby's story at The Griefy Way.

The conversation

In 2019, more than 1,600 people were saved thanks to organ donors like Sebby but there are still just as many on the Australian transplant waiting list who are relying on a family saying ‘yes’ to organ donation.

Helping navigate families through this difficult decision is Jodi Pasfield.

Jodi is the Donation Specialist Nurse for SCHN, a role which involves her meeting with families as part of end of life care in ICU to provide information and discuss the possibility of organ and tissue donation.

It is never an easy conversation to have but it is an important one to give families all the information and support they need to make the decision that is right for them.

“Families are incredibly brave and generous when considering organ and tissue donation, especially when in many cases, this may not have been something they have ever discussed before,” Jodi said.

“I feel so privileged to work with, and support families, during this time. At the worst point in their life, they give a precious gift of hope, life and love to another family and that is truly inspiring.”

Families play a crucial role in the donation process because they are asked to confirm whether their loved one wanted to be a donor. This can be a tough question to answer, particularly on behalf of a child, but openly talking about organ donation at home and registering this decision can help.

“We know that in 9 out of 10 cases, families agree to donation when their family member is a registered donor so talk to your family and friends about your wishes, talk to your children about it and make sure you register your decision,” Jodi said.

This conversation could save lives, like Indiana’s.

Indi’s second chance

She may be too young to remember, but one-year-old Indi has already received the most important phone call of her life.

At just one day old, Indi was diagnosed with biliary atresia, a rare condition that destroys the bile ducts of the liver. After initial surgery to correct the condition failed, Indi’s parents, Lee and Ryan, were told their little girl would eventually need a liver transplant.

That day came in the not so distant future when, at four-months-old, Indi’s liver started to fail.

“When Indi’s liver started to fail, she went down hill very quickly and was getting sicker and sicker as the days went by,” Lee said.

“Time wasn’t on our side so I was sent over to RPA to have my own work up done in case a liver didn’t become available. I would be a live donor option to save Indi’s life.”

Fortunately though, the life-changing phone call came just in time and in a matter of hours, Indi was having surgery at The Children’s Hospital at Westmead.

After a mammoth 16-hour operation and six more weeks of recovery, Indi was well enough to go back home and has been kicking goals ever since.

“Her life and ours have changed so much for the better. She is such a happy and chilled little toddler now, you wouldn’t even know what she has been through to look at her and we owe all that to her donor,” Lee said.

“We feel so lucky and grateful to have received that phone call and think of Indi’s donor and their family every day. Words cannot express how grateful we are.”

After their little girl’s tumultuous journey, Indi’s family are doing all they can to raise awareness about organ donation and the difference it can make.

“Before this happened to us, organ donation was not something we had even thought about but it is so, so important and we would encourage everyone to have the discussion with their family and to register their decision.”

“Indi wouldn’t be here without it.”

Donate Life Week runs from Sunday 26 July – Sunday 2 August. To register your decision visit www.donatelife.gov.au