Talk to your family about organ donation this Donate Life Week

Today 1400 Australians are waiting for an organ transplant that will change their lives. Some will be fortunate enough to receive this gift from a relative but for the majority, they are relying on the generosity of strangers.

This coming Sunday 28 July until Sunday 4 August we celebrate 2019 Donate Life Week, a week dedicated to not only raising awareness about organ donation but also promoting the importance of having the discussion about organ donation with your family and friends.

In Australia, nine in 10 families agree to donation when the person is a registered organ donor, but this halved when the person was not registered and the family had no prior knowledge.

Many children across the Sydney Children's Hospitals 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.

If you wish to become an organ donor, register your decision at www.donatelife.gov.au and discuss this with your family and friends.

Kate’s story

Born in San Diego while her parents were working in the USA Kate was a healthy happy baby, but at just two months old her parents noticed her eyes started to become yellow.

After a visit to the GP and a blood test Kate was taken straight to Emergency where she was diagnosed with Biliary Atresia  - a rare disease of the liver where the bile ducts become blocked and prevent the liver from functioning properly.

Kate’s family were told she would need a liver transplant to ensure she made it to her first birthday.

Her mother Clare Burrows said their world completely changed at that point.

“Kate was away from her much loved brothers and dad for many weeks at a time," she said.

"It was very challenging being apart but she was so unwell that we knew we needed to be in hospital.”

Kate was swiftly placed on the transplant list but as each day passed she began to deteriorate event further. After three months on the list the Burrows family received a call to say a donor had been found. Kate had her first liver transplant shortly after but her recovery didn’t go as planned.

Over the next eight months Kate spent more time in hospital than at home – she eventually stabilised enough for the family to make it back home to Australia. But after a few days being back on home soil Kate’s family were told the liver had rejected and she urgently needed another.

Two months later Kate received her second liver transplant at The Children’s Hospital at Westmead and since then has made a huge recovery.

“Kate has maintained a smile throughout everything and has recently started pre-school.” Mrs Burrows said.

“Not a day passes where we don’t think of our donor families."

"This experience has changed our whole life and we hope that by sharing our story we can encourage people to talk about organ donation and the life changing impact it has.”

Maksim’s story

“I will never forget the transplant. I was overwhelmed with emotion and wondering whether the toll on my baby boy would be too much.”

Kellie’s little boy Maksim was diagnosed with Denys-Drash syndrome soon after he was born. It’s a very rare condition that eventually causes the kidneys to break down.

As Maksim grew, his kidney function worsened. At six months old, he needed surgery to remove cancerous growths. And two years later the dreaded moment arrived, his kidneys gave up.

“He woke up one morning and his face was really swollen … later he started vomiting and struggled to breathe. He crashed quickly and almost fatally.”

It was the start of a terrifying new reality for Maksim, his mum Kellie, and dad Stevan.

The next 18 months would bring long stays at Sydney Children’s Hospital, Randwick, daily dialysis and invasive surgeries. And at the end of it all, a kidney transplant that was Maksim’s only real hope for a healthy childhood.

It was a traumatic time for Maksim and his family. Stevan spent every night in Hospital by Maksim’s side, while Kellie left home at the break of dawn travelling every day with their baby daughter Hannah, who was only six months at the time. Kellie said:

“It definitely tests you as a couple when you have a sick child – the exhaustion, the fear you have for them and not knowing what the future would hold.”

As Maksim regained his strength, his parents learned how to do his nightly dialysis, so they could care for him at home.

 “It was good to know we could always call on the team if we weren't sure of anything. We had to make a few scary calls in the middle of the night, and we’d always get put through straight away.”

With the ongoing support of the Nephrology team at Sydney Children’s Hospital, Randwick, Kellie and Stevan could keep Maksim alive and at home with his little sister.

But dialysis was far from an ideal treatment. Their once spirited little boy was always exhausted. A few times his internal tubing got twisted, causing terrible pain. And he was often back in Hospital with infections.  

Maksim urgently needed a kidney transplant – and his mum and dad were the first to put up their hands to donate.

Maksim’s family were relieved when doctors said Stevan was a good match to give a kidney to his son. They then had to wait and prepare for the surgery, which Kellie said was incredibly stressful.

 “Just the sheer terror and the waiting all day to make sure both my boys came out the other side ok... The first time I saw Maksim in ICU with so many lines and a big cut right down the middle of his tummy where his new kidney sat, it was a really emotional day.”

Maksim’s transplant was a success. Just before last Christmas, after years of extraordinary care at the Sydney Children’s Hospital, Randwick, Maksim went home for the first time with a healthy, working kidney.

Today Maksim is a vibrant, happy five-year-old, who will start school next year and although challenges lie ahead, loves hanging out with his sister and drinking chocolate milkshakes.

Alise's story 

After being diagnosed with Polycystic Kidney Disease shortly after birth Alise's childhood was far from average.

Alise spent many years in and our of The Children's Hospital at Westmead undergoing treatment and numerous surgies just to keep her alive.

Ultimately it was decided a kidney transplant was her best chance at survival. 

But the years of surgeries and medication took a toll on Alise’s organs and her liver began to fail.

She was then diagnosed with Cholangitis after the bile ducts in her liver began to fail and Alise was put on the transplant wait list needing a double kidney/liver transplant. 

After four long years on the transplant waiting list, Alise’s family finally got the call that changed their lives forever. 

"Doctors had taken my parents in prior to the call to advise I wouldn’t have much time left my liver was failing fast and my body was no longer responding to medication," Alise said. 

After the phone call the family rushed to The Hospital and it was finally time for Alise to undergo the life-saving surgery she had been waiting so long for.

Dr Albert Shun and his team successfully performed the surgery and Alise made a remarkable recovery, returning home just 14 days after her double transplant.

Now 27 years old, Alise leads a normal, healthy happy life.

“My life now is exceptional now remaining as healthy as I can given the circumstances," Alise said.

"I don’t waste a second. I always make sure I’m working, learning, training or traveling.” 

Her team are thrilled with her progress and she is still extremely grateful for the exceptional care she received at The Children’s Hospital at Westmead. So much so that she recently returned to the hospital to visit the individuals that literally saved her life.

Alise’s remarkable story would not have turned out so brilliantly had she not received an organ donation.

“None of this would be possible without the selfless act of the wonderful family allowing their child to be an organ donor." she said.