The very personal reason Jordan wants to work with sick children

Jordan at the Transplant Games.
Jordan at the Transplant Games.  

Jordan Bate was only a few days old when doctors diagnosed him with Alagille Syndrome, a genetic disorder that affects multiple organs.

Jordan and his twin brother had suffered jaundice straight after their birth but when Jordan failed to recover, doctors found he had the rare condition, which causes a shortage of bile ducts in the body, leading to a build-up of toxins in the blood stream.

The condition, which also affects Jordan's heart and causes brittle bones, left him "feeling sick pretty much every day". He also suffered itching and showed the obvious signs of liver disease – yellow or green skin.

Jordan shortly after the transplant.
Jordan shortly after the transplant. 

"On certain days I would look more green than others. Some days I would look normal, but from when I was about four I also had a feeding peg because my liver was not able to absorb all the nutrients that I needed.

"I was not able to do everything that a normal person could do."

While Jordan loved sport, and enjoyed playing soccer and netball, he had to give these up.

At the age of 10, he took up dancing, including hip hop, contemporary and musical theatre, bringing a sense of normalcy to his life.

"When I was up there dancing I could forget about my health. I felt like a normal person," he says.

But by the time he was 14, Jordan's health had deteriorated to the point he could only manage to go to school two to three times a week.

Advertisement

"I was really worried about missing out on the chance to get the best marks I could in year 12 and the quality of life I was having," says Jordan, who took matters into his own hands, asking doctors who previously raised the possibility of a liver transplant to place him on the organ transplant waiting list in 2014.

Twenty months passed before Jordan answered the phone one morning in April 2016.

"Usually I am a heavy sleeper but I heard the phone first and ran out and grabbed it and a voice said 'Hi, am I talking to Jordan Bate? We have a possible liver for you if you can come in as soon as possible'."

Jordan and his family rushed to Princess Alexandra Hospital in Brisbane, where they were told a liver was on its way from another state. But they were warned doctors would not know for sure if the transplant could proceed until after surgery commenced.

Jordan said goodbye to his family. Being only 15, his mother was allowed to stay with him in theatre until he fell asleep before surgeons embarked on the four-hour operation to remove his diseased liver and replace it with the right lobe of a donor organ. The smaller left lobe went to a young girl in another state.

"I woke up in the ICU and I remember feeling my stomach and it was all bloated but the next day I remember thinking I felt different. I felt a lot better," explains Jordan.

"I didn't really realise how sick I had felt before because I didn't know any different." Jordan went home after a week but suffered a complication 10 days later and ended up back in hospital with a herniated bowel. Doctors removed a metre of bowel and his weight plummeted to 36 kilograms.

He spent his 16 th birthday in hospital, too sick to celebrate and battling depression.

"I had gone to the lowest of lows," recalls Jordan.

It was the nurses he encountered during his subsequent recovery that helped him through those dark days and left a lasting impression on Jordan.

Despite missing half of year 12, Jordan completed his final exams and gained entry into Griffith University to study a Bachelor of Nursing.

He has just finished his first year and has been accepted into a specialised course in paediatric nursing. He hopes to one day work with sick children either in emergency or a transplant unit.

When he is not at uni, studying or working part time, Jordan enjoys dancing and ten pin bowling, one of the few sports he was able to play when he was sick.

Earlier this year he took part in the Australian Transplant Games on the Gold Coast, winning a gold medal for ten pin bowling.

Jordan, now 19, says none of this would be possible without the organ donor and their family.

"To be honest, I don't think any words could come close to being enough to say thank you," says Jordan.

"I have been able to go to university, I have been able to study, I have been able to graduate high school, I have been able to get into university. I have been able to start my first job.

"None of that would be possible without this transplant."

The first Christmas after his transplant Jordan sent a thanks you letter to the DonateLife transplant co-ordinator to forward to the donor's family along with a glass Christmas ornament with the words 'My Donor My Hero'.

Jordan is a DonateLife Champion and promotes organ donation along with his mother, twin brother and grandmother.

Jordan says raising awareness of organ donation is an honour and a way to give back.

It also allows him to pay tribute to those who died before organs became available.

"I actually had a few friends who have missed out unfortunately because they were too sick," says Jordan.

A spokeswoman for the federal government's Organ and Tissue Authority said 1676 people received lifesaving organ transplants in Australia last year. Of those, 86 were children aged under 15.

The organs were donated by 510 deceased donors and 273 living donors, including family members.

These figures do not include eye and tissue transplants.

For more information about organ and tissue donation or to join the Australian Organ Donor

Register visit donatelife.gov.au.