Izzy Headings beamed with pride as the sound of a bell rang around the hospital ward where she had spent so much of her short life.
It was the sound of hope, happiness, and a piece of history being made.
Because three year-old Izzy was the first person to ring the country’s only transplant bell at Bristol Children’s Hospital to celebrate receiving her life-saving new kidney.
The bell was donated to the renal ward as a thank you gift by Izzy’s parents and those of her friend Thomas Pryce, who received a kidney transplant just 24 hours before her.
Mum Emma, 37, said: “All the nurses and doctors on the ward stopped to watch Izzy ring the bell and applaud. It was wonderful to share that special moment with them, to recognise all the hospital staff who saved her. She wouldn’t be alive without them.
“It is quite common for hospitals to have cancer bells that patients ring when they finish their treatment. But there was nothing to mark a kidney transplant or acknowledge that these children have finished years of dialysis and can start living a proper life.
“So we decided to buy the bell as a thank you. Now other children will have something to aim for.”
Izzy’s kidneys did not develop properly in the womb and failed at birth.
She needed dialysis immediately to remove the toxins building up in her blood and her devastated parents Emma and Neil were warned a kidney transplant was her only hope.
Emma said: “Izzy’s kidneys were so tiny they struggled to see them on the scan. It was horrific.
“We really had no idea whether the dialysis would work, but we only had two options – try dialysis or let her go. We decided to give her a chance.”
After more than 12 weeks in hospital, Izzy was allowed home with a dialysis machine and hooked up for treatment each night.
The sound of the machine alarm regularly shattered her parents’ sleep.
She did not eat at all and had to be tube fed milk, but vomited so regularly she struggled to gain weight to reach the 10kg threshold for a kidney transplant.
Twice a week she had to be injected with an artificial hormone to stop her becoming too anaemic.
Emma had to give up her job as a climate researcher after studying for 11 years in order to devote herself to caring for Izzy.
The family also had to cancel their first holiday to Cornwall when Izzy’s feeding tube pierced her bowel. She was rushed to hospital for emergency surgery as the symptoms of life-threatening sepsis developed and doctors struggled to stabilise her.
Emma, from Bristol, said: “I found it hard to look at her because she looked so ill, but I knew I had to, because it might be the last time I saw her alive.”
By the time Izzy was big enough to join the transplant waiting list she had spent 200 days in hospital and another 200 hooked up to a dialysis machine at home. Renal bone disease had caused her legs and wrists to bend and she still shuffled around on her bottom, unable to walk.
Dad Neil, 36, hoped to be a live donor for Izzy and was a perfect tissue match, but the plan fell at the final hurdle when doctors discovered his kidney had too many arteries to transplant.
Emma said: “He cried when he got the phone call at work, because he thought he had the opportunity to save his daughter’s life, then it was taken away. It was devastating.”
The family were warned they could wait up to three years for a transplant, but incredibly a suitable kidney from a 40-year-old donor was found after just five weeks. Izzy had her transplant in January this year, just before her third birthday.
More remarkable still, her friend Thomas had his transplant from a 30-year-old donor a day earlier after a similarly short wait for a kidney, despite needing a different tissue type.
Thomas was born just weeks after Izzy and was given her hospital room when she was discharged.
His mum Emma, 37, and dad Owen, 35, have been friends with Izzy’s parents ever since.
Because Thomas was delivered by caesarian at Swindon Hospital, mum Emma had to wait two days before she was deemed well enough to follow him to Bristol. She said: “Being in a different hospital when Thomas was in a different hospital was the hardest part. I just wanted to be with my baby.”
He even had a similar scare to Izzy when his gut shut down after he was fitted with a catheter and his parents feared they would lose him to sepsis.
Though he subsequently coped so well with dialysis treatment that his family managed to take him to Portugal on holiday before he underwent his transplant surgery.
Thomas’s mum Emma said: “Talking about Izzy and Thomas gives me goosebumps because they have followed in each other’s footsteps through the whole journey.
“I messaged Emma to tell her we’d had the call, hours later she replied to say they might have a kidney for Izzy. It was hard to believe it was possible.
“It was surreal having them both in intensive care, recovering from their transplants at the same time.”
Though Thomas had his transplant first, Izzy became the first person to ring the new bell as she made a quicker recovery after her operation.
It took a week before Thomas’s “sleepy” new kidney began to work and it proved sensitive to the potentially-toxic drugs he took to stop his body rejecting the organ, doctors spent months tweaking the dose.
His mum Emma said: “The anti-rejection drugs are actually toxic to the kidney, so there is a really fine balance, making sure the body gets enough drugs so it doesn’t reject the new organ, but not so much that it kills the kidney off.
"The only way they could do that was to perform a biopsy, which they didn’t really want to do for fear of damaging the kidney.
“We are in a much better place now. Thomas is full of beans, bouncing off the walls. We never expected that before his transplant.
“Before his transplant he couldn’t have a bath to avoid getting his tubes wet.
“Over the summer he was jumping in the paddling pool at nursery with his clothes on.”
Izzy’s transplant had an even bigger impact. Her mum Emma said: “Izzy started walking a month after her transplant, she stopped vomiting, and her bones have already started straightening. Every year we take her to the National Arboretum.
“Before her transplant, she had to sit in her pushchair and I wished she could walk through the autumn leaves.
“This year she could, she was running around looking for Gruffalo statues. She loves having the freedom to go out, play, and sing.”
Even so, both Izzy and Thomas will probably need further kidney transplants in the future as their new organs are unlikely to last their whole lifetime.
Izzy’s mum Emma said: “You hear about some kidney transplants that last 40 or 50 years, but that is unlikely for Izzy and Thomas because they had the operation so young.
“The transplant is a treatment, not a cure. They could go through several kidneys in a lifetime. That is why it’s so important for people to join the donor register, so people aren’t trapped on a waiting list for years.”
Dr Maria Tennant, of Kidney Research UK, said the bell was a wonderful idea to help children mark their transplants after a long wait caused by the shortage of donors.
She said: “Izzy and Thomas’s story highlights why sharing your wishes to be an organ donor with your loved ones in so important and why Kidney Research UK are working hard to find new ways to treat or even prevent kidney disease developing.”
- For more information about Kidney Research UK, its work to treat kidney disease, and transplantation, visit the KidneyResearch website
