Oldham youngster stuck in hospital after transplant rejects

Like most children, 10-year-old Sienna cannot wait for Christmas but there is something she wants even more than a visit from Santa - a life-saving organ transplant.

The youngster has been waiting in hospital in Leeds for months for a second liver transplant.

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The girl suddenly experienced liver failure in 2017 and now her body is rejecting the first transplant she received.

Her mum, Danielle, said: "In May 2017, we picked Sienna up from school and noticed she was a little yellow.

"We decided to take her to our local A&E to be checked where they said she was jaundice and they were going to keep her in overnight for observation.

"Sienna’s health deteriorated but they couldn’t find a reason why so we were transferred to Leeds.

"When we were there we were informed that Sienna was suffering from liver failure and needed a transplant urgently - the doctor thought she only had around a week to live and she was placed on the urgent waiting list."

After five days, which the mother said was an "agonising wait", the family were told there was a liver available and were lucky enough that the transplant was processed and everything "went amazingly".

However, six years later, Sienna is now going through chronic rejection and has been placed on the waiting list once again for a second transplant.

The youngster has been in and out of hospital since October last year, but now she is not well enough to come home and faces spending Christmas in the ward.

Her mum added: "We have been in hospital for over two months now and she has to stay in hospital until she has had her transplant.

"I could not tell you how much we appreciate the person who donated Sienna’s liver in 2017 and their family for giving us an amazing five years of good memories and reasonably good health with our little girl.

"I really thought of them as her guardian angel.

"Now we just have to wait and pray that she gets another offer in time so she can get back to being a 10-year-old living her best life, back at home with her brothers and sister where she belongs."

Sienna and more than 230 other children in the UK urgently need this precious and ultimate gift of life if they are to see more Christmases.

Arsala is just three years old and is being kept alive on a device until a donor heart becomes available (Image: NHS)

Another youngster, Arsala, aged three from Higher Blackley in Manchester, is also in need of a transplant.

The young girl has dilated cardiomyopathy and needs a heart transplant to save her life, and has been on the waiting list for nine months already.

The girl is being kept alive by a Ventricular Assist Device (VAD) in Freeman Hospital, 150 miles away from home in Newcastle, until a donor heart becomes available.

Her dad, Baber Shahzada, said: "Arsala amazingly can speak and understand Urdu, Spanish and English but she is missing out on being a normal inquisitive three-year-old going to nursery and making friends at playgroup.

"Due to her VAD, she is vulnerable to infections and viruses as well as clots.

“Every day is a waiting game before we can all start our lives again when she gets that amazing gift from a very brave family.

“We are doing the best we can to take care of her while we wait but cannot express how difficult it is.

“Without people considering being a donor or donating their child’s organs, we will not get to leave this hospital and be reunited with family and friends.”

In a bid to raise awareness of the need for more child organ donors, a powerful campaign has been launched that sees the youngsters transformed into handmade dolls that will sit across the country.

Each doll has a badge to invite people to scan a QR code to hear the stories of children waiting for transplants from across the UK.

Sienna's doll tells her story in Royal Manchester Children's Hospital (Image: NHS)

Sienna's doll is currently sitting in Royal Manchester Children's Hospital and it is hoped the dolls and the real-life stories of the youngsters in need will inspire more parents to consider organ donation and add themselves and their children onto the NHS Organ Donor Register.

In 2021/2022, just 52 per cent of families who were approached about organ donation gave consent for their child's organs to be donated, representing just 40 organ donors under the age of 18.

However, in cases where a child was already registered on the NHS Organ Donor Register, no family refused donation. 

To address this imbalance, the new campaign, Waiting to Live, aims to encourage parents and families to consider organ donation and, it is hoped, register themselves and their children as donors.

Sienna's mum, Danielle, added: "Why wouldn’t you want to save a child’s life if you can?

"If everyone was on the donation list then the wait wouldn’t have to be so long and the children wouldn’t have to become so ill that they might not make it to transplant.

“People who register to be a live donor or a donor when they pass are literally saving more than one person’s life and that’s something to be proud of.”

Rachael Barber, medical director at Royal Manchester Children's Hospital, also said: "As one of the country's busiest children's hospitals, it is important that we encourage open conversations about organ donation.

“This is a powerful campaign to be a part of and hopefully Sienna’s bright and eye-catching doll will bring this topic to the forefront of people’s minds.”

Angie Scales, lead nurse for paediatric organ donation at NHS Blood and Transplant, said: “For many children on the transplant waiting list, their only hope is the parent of another child saying 'yes' to organ donation at a time of immense sadness and personal grief.

"Yet, families tell us that agreeing to organ donation can also be a source of great comfort and pride.

"When organ donation becomes a possibility, it is often in very sudden or unexpected circumstances.

"When families have already had the opportunity to consider organ donation previously or know already it is something they support, it makes a difficult situation that bit easier.

“By encouraging more young people and their families to confirm their support for organ donation on the NHS Organ Donor Register, we hope to be able to save more lives of children, both today and in the future.”

If you have a health story, email me at Olivia.bridge@newsquest.co.uk or send me a message on Twitter @Livbridge.