BY TOBY PORTER
A three-year-old girl has celebrated her first anniversary of receiving a new kidney by becoming the youngest competitor at the British Transplant Games.
Mia Mifsud, from Wandsworth Town, had both her kidneys removed when she was three months old due to a rare genetic condition which caused her kidney to grow to more than adult size, putting all her other organs in danger.
The condition, called autosomal recessive polycystic kidney
disease (ARPKD) caused her to have a mini stroke and severe breathing and digestive problems.
Mia’s mother, Danielle, said: “On our third day in hospital after Mia was born the doctor noticed her stomach was hard and he suspected that something was wrong. Tests showed cysts on her kidneys but at that stage the doctors were not able to give us a diagnosis.
“The hospital rang Evelina London Children’s Hospital for advice and the following day we took the first aeroplane out of our home in Gibraltar to London.
“We were completely shocked when we found out that her kidneys were bigger than an adults. They were causing Mia serious problems which meant the first weeks of her life were spent in and out of the paediatric intensive care unit.”
In August 2018, after spending two years on dialysis – an artificial way of removing toxins from the blood which the kidneys would usually flush out – her father, Dion, donated one of his kidneys to her with an operation at Guy’s Hospital.
The surgery was a success but the medication to stop Mia’s body from rejecting the new kidney meant her immune system was suppressed, resulting in her developing sepsis five times between January and June this year.
Danielle, 34, said: “We were devastated when Mia had her kidneys removed –the first when she was six weeks old and the other one six weeks later.
“It was heart-breaking seeing her on dialysis. We couldn’t bathe her and she was on a heavily restricted diet.
Thankfully my husband was able to donate his kidney but we had to wait for her to put on weight before they could go ahead with the operation.
“The surgery was a success but Mia has been through so much since the transplant.
We feared her life was in serious danger after she repeatedly developed sepsis but she has continued to pull through. She really is a fighter.”
Thanks to the care she received at Evelina London, Mia has now recovered and in July started walking for the first time.
Last month she attended the British Transplant Games in Wales with her parents and her sister, River, as part of the Evelina London team.
Mia was the youngest competitor at the games and took part in events like the under-fives 25m dash.
Danielle said: “We are extremely thankful to Evelina London for the fantastic care Mia has received.
Everyone has been really invested in making sure she got the treatment she needed – we owe Mia’s life to them.
“The nurses in the renal team have really gone out of their way to look after us and make sure we’re all comfortable, from collecting Mia’s medication when I’ve not been able to, helping find us suitable accommodation in London and answering my calls and texts, even late at night. Nothing is ever too much. I really couldn’t have asked for better care.
“I haven’t been able to return to Gibraltar since we arrived in London but I’m hopeful we will be able to return before the end of the year. Our main priority is making sure Mia is well and healthy.”
The British Transplant Games are held every year and see hospital teams from across the UK compete in 25 different sports events, such as swimming, tennis, table tennis, badminton, cycling and athletics.
Evelina London’s Transplant Games team, the Evelina VIPs, is made up of patients who have received care at the children’s hospital following a kidney transplant.
Together they brought home 58 medals – including 15 gold, 25 silver and 18 bronze – and won the Best Children’s Kidney Team.
Danielle said: “Attending the British Transplant Games was an incredible experience. It’s the first holiday we have taken as a family since Mia was born.
It was amazing connecting with other families who have been on a similar journey to us.
We all got a lot out of it including Mia’s sister, River, who was able to participate in the events for siblings.
“Watching Mia take part in the 25m dash race and cross the finish line was a very special moment for us. It really showed how far she has come and what a determined little girl she is.
We were completely blown away as she only started walking three weeks before. Everyone was cheering her on. I don’t think I’ll ever forget it.”
The Evelina VIPs are supported by team managers Grainne Walsh, transplant advanced nurse practitioner, Cathy Gill, senior play specialist and Pat Hayes, dispensary manager, plus 11 volunteers.
Grainne Walsh said: “We are delighted Mia is doing so well and was able to take part in the British Transplant Games.
Having a child who has undergone a transplant can be a very isolating and lonely experience, so the games are a great opportunity for our patients and their families to come together and create a network of support.
“The games really highlight the positive impact kidney transplants have on our patients and their families’ lives. It’s always lovely to see our patients enjoying themselves, especially children who were previously very unwell.
We enter a team every year but this year was extra special as Evelina London is celebrating 150 years of saving lives and improving health.”
Evelina London is celebrating its 150th anniversary this year.
The hospital was founded in 1869 as Evelina Hospital for Sick Children by Baron Ferdinand de Rothschild, whose wife, Evelina, died along with their baby in childbirth.
To find out how Evelina London will be celebrating its special birthday, visit www.evelinalondon.nhs.uk/150