Donate Life Week: Alana's Story

Right now, as you read this article, more than 1400 Australians are waiting for a lifesaving or life-transforming organ transplant. Some will receive this life-changing gift from a relative but many are relying on the generosity of strangers who have opted in to organ donation.

This week (Sunday 30 July - Sunday 6 August 2017) celebrates 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 registering your donation decision with the Australian Organ Donor Register

In Australia, nine in ten families agree to donation when the person is a registered organ donor, but this drops to just 52% where 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,

  1. Register your decision at www.donatelife.gov.au
  2. Discuss your decision with your family and friends

Alana's Story

When Alana became unwell just before her fourth birthday, her parents had no idea how serious it would be. But in a matter of days, their little girl, who had never had anything more than a cold before, was diagnosed with Oxalosis and Primary Hyperoxaluria – a condition that until that day, they had never heard of.

The rare metabolic liver condition means that Alana’s liver is missing the vital enzyme needed to control the production of oxalate in the body. Without this enzyme, oxalate is produced at dangerously high levels, depositing crystal like stones in the kidneys that can lead to life-threatening damage. 

For Alana, by the time she was diagnosed, the oxalate had already caused significant, irreversibly damage. Her kidneys were only functioning at 30% of their normal capacity and her parents were informed that because of the damage, she would likely need a kidney transplant in the future.

The toxic levels of oxalate in her blood also meant there was a risk her condition could cause damage to her heart and retinas and weaken her bones.

Alana was immediately put on kidney dialysis at The Children’s Hospital at Westmead, five hours a day, five days a week to help keep her kidneys functioning but with no cure for this devastating condition and in order to save her other organs, Alana needed a new liver.

“In just a couple of days our life was turned upside down. We had to learn that our beautiful and healthy looking girl was not very healthy at all,” Alana’s Mum, Jinan said.

“It was very hard to believe that this was happening in her, she was in hospital almost every day for dialysis, Alana had to drop school and I had to leave my 11month old baby behind every day to be by her side.”

While Alana spent roughly nine weeks on dialysis, she only spent 25 days on the liver transplant wait list before her family received the news they had been so eagerly waiting for.

“One day, while Alana was on the dialysis machine, her kidney doctor delivered the news. He was so excited and happy for her that he wanted to deliver the best news in person.”

“That day, we didn’t go home, we stayed in the hospital and the next morning Alana was transplanted, she finally got a new liver,” Jinan said.

Since her transplant, Alana is doing better than ever. She no longer needs to be on dialysis, her appetite has returned and she is meeting all the milestones of a normal four-year-old girl.

While Alana still has a long road ahead of her and will need another transplant in the future, her liver transplant gave her back her childhood – a gift her family could not be more grateful for.

“We cannot be grateful enough for the amazing generosity of the donor family. I think of them every day, their decision gave our little girl her life back. It gave her back what everyone else takes for granted,” Jinan said.

“Organ donation not only saved our daughter's life but maybe mine too because I don't know what I would've of done without her.”

This July, Alana and her family are supporting Donate Life Week and encouraging all families to have the discussion about organ donation with their families.

John's Story

Meet 21-month-old John. Even before John was born his parents knew he would one day need a kidney transplant.

His undersized kidneys were picked up by ultrasound in utero, and while it was hoped that they would last until he was at least five years old, at birth doctors discovered he would need a transplant much sooner. However, this could not happen immediately. John would need to grow bigger – to at least 10 kilograms to make sure an adult kidney could fit into his little body.

As months went on, John’s family and the Nephrology team at Sydney Children’s Hospital, Randwick worked to get John’s weight up. It was also during this time that John’s kidney function continued to decline. This required him to undergo nine hours of dialysis each day, making John one of the youngest Australians to receive dialysis treatment for renal failure.

His parents, Clare and Rob, did everything to make sure their little boy was as well as possible. This included learning how to provide John with dialysis at home, and being worked up to see if they could donate their kidney to their son.

After more than year of daily dialysis and a number of Hospital admissions, transplant started to become a reality. The donor? John’s dad, Rob.

On Friday, 10 March 2017, John and Rob were wheeled into surgery, leaving mum, Clare waiting.

“The day of transplant was pretty huge for us. It was quite surreal that the day was actually there because Johnny had been sick for the five weeks previous and we’d already missed our first transplant date,” Clare reflected.

“When they were in surgery, it hit me. This was huge, that my perfectly healthy husband was being cut open to take out an organ to give it to my 16-month-old son. It’s not something you can comprehend.”

After hours of waiting, surgery was a success. Now, almost five months later, John and Rob are doing well.

“Johnny is doing tremendously! He is standing on his own, talking and eating, all things he couldn't do pre-transplant. He is loving going to the park, playing on swings and slides, and chasing his siblings around the house,” said Clare. 

This week, John and his family are supporting Donate Life Week and are encouraging all families to have the conversation about organ donation.

“While we were lucky to have Rob be a match for John, other families are not. Organ donation is so important and we urge everyone to have the conversation.”

Cooper's Story

When Cooper was born, his parents could not have been more excited. But their world was turned upside down just two days later, when their baby boy slipped into a coma.

With little clues as to what was causing Cooper to become so sick, doctors at The Children’s Hospital at Westmead immediately began the rigorous process of testing to pinpoint a diagnosis, while also trialling different treatments to keep Cooper alive.

After two months, doctors found the answers they had been looking for, Cooper was born with a urea cycle defect (UCD) called CPS1 deficiency. The rare genetic condition is the most severe form of UCD and meant Cooper’s liver was not able to convert ammonia, a highly toxic substance, to urea.

If left untreated, the condition causes dangerously high ammonia levels in the blood that can lead to severe brain damage and in some cases, death.

Cooper’s condition was initially managed with medication and an extremely strict diet but as he grew, his hyperammonia attacks increased. With current treatment no longer working, doctors had to look to other options and on Cooper’s first birthday, it was decided that a liver transplant was the best option to save his life.

For Cooper, with each passing day his need for a new liver became more urgent. His parents were attached to their phones, waiting for the phone call that would change their lives.

Thankfully, that call came just in time three months later.

“It was a such a weird feeling. It was scary and exciting all at the same time,” Cooper’s Mum, Rhiannon said.

“It’s so sad to know that a family lost a loved one to save our son but we are forever grateful to our donor family.”

Cooper’s transplant was an enormous success and despite a few challenges and setbacks, he has since thrived. His new liver not only saved his life, but gave Cooper the ability to breakdown protein, meaning he is no longer at risk of hyperammonia attacks.

Now four years old, Cooper is a happy and healthy little boy who doesn’t let anything stand in his way.

“He can finally eat whatever he wants and he has flourished in himself. He is so happy and cheeky, just like a normal four-year-old now,” Rhiannon said.

This week, Cooper and his family are supporting Donate Life Week and are encouraging all families to have the conversation about organ donation.

“I would honestly encourage everyone to become an organ donor, if they are able to. It is a decision that could give someone that second chance at life and give them more time to spend with their loved ones, which at the end of the day is the most important thing.”

Andrea's Story

 

Andrea was only six weeks old when she was diagnosed with Biliary Atresia,a rare disease of the liver and bile ducts that occurs in infants. Her parents thought she may have been suffering from whooping cough and immediately rushed her to the local hospital, where doctors noticed she was jaundice. This is how her hospital journey began.

After being transferred to the Sydney Children’s Hospital, Randwick where further tests were taken, it was determined that Andrea would need to undergo a Kasai operation. The aim of the operation is to create a drainage tube to allow bile to flow from the liver to the intestines. In Biliary Atresia the drainage tubes are permanently damaged and this causes bile to remain in the liver causing scarring.

Sadly, the Kasai procedure failed as too much damage and scarring had been done to the liver from the bile. This meant that the only remaining option to save Andrea’s life was for her to be considered as a candidate for a liver transplant.

Andrea was referred to The Children’s Hospital at Westmead’s Liver Transplant Unit, where under the care of Dr Michael Stormon, she was placed on the organ transplant waiting list.

Waiting for the life-changing phone call felt like an eternity for Andrea’s parents but after three months they received the news they had been waiting for – a liver had been found.

Unfortunately though, the good news didn’t last. Due to a number of reasons, the liver was not suitable for Andrea and she and her family returned home to wait again.

It was an extremely tough time for Andrea’s parents but they never lost hope.

Not long after, the phone rang again with the news that another liver had become available for Andrea. Andrea’s operation was a success and thanks to the organ donor, the generosity of their family and the Liver Transplant Team at The Children’s Hospital at Westmead, Andrea was given a second lease on life.

“It seemed so surreal,” Andrea’s Mum, Paola, said, “We feel so blessed and grateful for this gift of life.”

“Now that Andrea has had her transplant, she has life again! It's like she's a whole new baby. Before, in our minds we always looked for the positive and kept telling ourselves that she was doing alright but now we see the difference. Now days, she is full of energy, eating wonderfully, putting on real weight and ticking off all those milestones she was struggling to reach before.”

This year, Andrea’s family are supporting Donate Life Week and encouraging everyone to have the discussion about organ donation with their family.

“Organ donation is such an important subject to discuss with the family; it can literally save a life.”

“We are so grateful to the family who made the difficult decision to donate and helped save our little girl. It is truly a miracle to give someone else the gift of life.” 

To register your decision, visit www.donatelife.gov.au