Record 11 liver transplants in one ‘magic month’ saves the lives of an amazing group of kids
IN one extraordinary month, 11 desperately sick children were all given a new chance at life thanks to the generosity of organ donation and the astounding skill of the Children’s Hospital at Westmead’s Transplant Unit surgeons. Jane Hansen explains.
NSW
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ONLY months ago Charlize Gravina was out of time.
The toddler had end-stage liver disease. The condition left her skin with a yellowish pallor, she was sleeping 22 hours a day and when she wasn’t in bed, she was confined to a pram.
“She was out of time, we had no choice, this was the end for her,” her mother Julie Gravina told The Sunday Telegraph.
Charlize and her twin brother Isaac were born with a rare genetic condition called Propionic academia. It slowly poisons the body with toxins it can’t break down.
A liver transplant is the only salvation and can almost provide a near-normal life. Without it though, most children die by the age of five.
Last year, Isaac had such a transplant but died from infection just weeks later.
He was only 20 months old.
“You hand your child over to these surgeons and they are your hope,” Mrs Gravina said through tears.
“But I also think of the donor family because I know a child had to pass away — and I know what that feels like.”
The emotions of putting Charlize through the same procedure are still raw but this time the transplant took and the Camden family feel they have been gifted a new life.
The recovery of three-year-old Charlize has been nothing short of remarkable.
She can walk, talk, learn and even run around. She is, as Julie says, “a brand new girl”.
“I love you can’t tell the difference between her and other children,” Mrs Gravina said.
“It is like staring at a newborn, she has always had a feeding tube stuck to her face and to see her without it, to see her full face is amazing.”
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Charlize is just one life-saving transplant story from a “magic month” at the Children’s Hospital Westmead.
She is among 11 desperately ill children who are now a picture of health, hope and happiness all thanks to the generosity of organ donation and the astounding skill of the hospital’s Transplant Unit.
Without them, these smiling faces simply would not be here today.
The group of kids are also record breakers.
During the “magic month” — which we cannot name for donor privacy reasons — the unit conducted 11 liver transplants in just four weeks, almost half of what they usually do in a year. It is the most they have ever done in such a short space of time.
“It was a lot of hard work, we did a large proportion of what we do in a year in that one month,” transplant surgeon Dr Gordon Thomas said.
“(That month) 11 very sick children got a liver transplant and children with liver disease are some of the sickest we treat and if they don’t get a new liver, they will die.”
As Department Head of the transplant team, Dr Thomas has watched organ donation rates in Australia slowly climb to the point where children no longer die on a waiting list, a tragic reality not that long ago.
Last year, 510 deceased organ donors and their families gave 1,402 Australians a new chance in life. Each transplant is an achievement in itself, taking between eight and 15 hours and a team of surgeons, physicians and anaesthetists who are rotated to ensure they are properly rested.
I’ve had to trust these people with Cooper’s life
From diagnosis to recovery, each child needs a team of around 100 people to guide them through the arduous process and, hardly surprisingly, each child has a remarkable tale to tell of their journey back to health.
Thanks to his transplant, Muhammed Younus Ahsan was able to enjoy his first birth just last weekend.
One of five babies who were given transplants in that magic month, the youngster was diagnosed with biliary atresia, the most common cause of liver disease, soon after birth.
His photo before transplant shows a very sick little boy who was deteriorating rapidly.
“All he would do was just lie down. He was so lethargic that he wouldn’t even cry for a feed. All he wanted was to be held. He had absolutely no energy to be a regular, growing baby,” mum Fatima Rasheed said.
The family from Perth waited nervously for just under a month for a donor liver and spent several more months in Sydney in recovery after one came through.
“Younus had a few hiccups post-transplant but he is doing very well now thanks to all the support from our family, the doctors, the nurses and most of all our donor family,” Mrs Rasheed said.
At the other end of the transplant age spectrum was Cooper Taber, 14, from Kiama.
He also suffers from biliary atresia, which is caused by blocked bile ducts which build up in the liver.
Cooper has been a regular patient at the hospital since he was born and he received his first liver transplant when he was just eight months old.
“There were a couple of years there where he was really good,” Cooper’s mum Renee said.
“But the last two years we have been in and out of hospital with infections due to blockages and they said he would have to go back on the transplant list, which he did in November.”
While she thought she had become an old hand at the transplant business, the 2am phone call that a suitable donor was available still came as a “huge shock”.
“You know I’ve had to trust these people with Cooper’s life. They are amazing and they are in surgery for 10 to 12 hours and the doctors come out and say ‘everything went well’ and they are so calm and look fresh. How can you look that fresh when you’ve been in surgery for hours,” Mrs Taber said.
Cooper is doing exceptionally well, having gained 15 kilograms since his transplant, a sign his body is working well.
“He’s amazing. He’s struggled for the last five years to put on weight but he is now enjoying his food and it’s a whole new life for him,” Mrs Taber said, explaining that she had recently penned a thank you letter to the donor.
Donating an organ from a deceased loved one comes with complex emotions, intense grief and confusion for the donor family. For this reason, transplant units around the country keep the identities of donors and recipients guarded, and a three-month time frame is set in place to eliminate guess work.
Recipients — and their parents — are invited to pen an anonymous thank you letter to their donor’s family.
“How do you say thank you, knowing the (donor) family is at such a low point, they have lost their loved one, but we are so happy, it’s just not an easy thing?” Mrs Taber said.
“I told them how grateful we are, that their decision has made a big difference and given my child another chance at life.”
Some of the “magic month” gang (we cannot name all those involved, again due to privacy reasons) came together recently to celebrate and launch the Leaping Livers fundraiser walk for 2018.
The children and their families are forever grateful that the message about organ donation is finally getting through.
After lagging behind other countries for years, more Australians are registering for organ donation and their loved ones are making the most altruistic and loving gift in their worst hour — recognising that their loss can give life and hope to others.
“Over time we have progressively become busier because we are fortunately getting more donors, deceased donors,” Dr Thomas said.
“More people are saying yes and more families are agreeing to organ donation when their loved one is at that stage, it is fantastic and a big change to what we faced several years ago.”
* For more details, go to leapinglivers.gofundraise.com.au or register.donatelife.gov.au