A family today spoke of their heartache after a life-saving liver transplant for their baby was called off at the eleventh hour.
Little Holly Harrison, who turned one on Friday, was diagnosed with a rare cancer just weeks ago after mum Nyree took her into the Sick Kids with flu-like symptoms.
Doctors immediately started Holly on chemotherapy and hoped they would be able to operate to remove a tumour the size of a grapefruit.
But a decision was made to place her on the transplant register amid fears the cancer had taken over the vital organ.
Then, just the day after she was put on the register, the family was told a liver had become available.
The operation was due to take place last night at Birmingham Children’s Hospital.
But it was cancelled at the last minute, leaving the family devastated.
Ms Harrison, 40, said: “We were just waiting for the liver to come. It didn’t arrive till really late and they obviously had to have a look at it.
“Then about 10.30 or 10.45pm they came and told us it wouldn’t fit.
“It was too big and they couldn’t split it.
“We are a bit upset. Now we just have to wait and see if a suitable one becomes available.”
Just hours earlier, she had described how she was feeling a mixture of “excitement and worry” at the prospect of the transplant.
She said the short journey from diagnosis two months ago to being called in for the major surgery had been a whirlwind.
She said: “They phoned us on Sunday morning and said they were putting her on the transplant list. Then they called again in the early hours to say they had got one for her. I never expected it to be as quick as it was.
“She is on the priority list because of the type of cancer it is but I couldn’t believe it happened so fast.
She’s so healthy-looking, you just wouldn’t think there is anything the matter with her.
“It’s been such a shock for us, especially when all people thought was wrong to begin with was a bad cold or flu.”
The mum-of-four became concerned that usually happy and smiling youngster first showed signs of illness after running a high temperature and being repeatedly sick. She took Holly to the local doctor’s surgery before rushing her to the Sick Kids, where she was immediately put on oxygen to treat a respiratory infection.
Doctors then found the lump during an initial examination and tests confirmed their worst fears that it was a tumour.
Experts believe Holly was born with the rare type of cancer, mainly seen in over-65s and affecting just 15 in every 100,000 children aged under four.
They told the family it was likely the tumour grew in size during her first year of life and she would no doubt have died if it had been left untreated.
Holly was sent from Sick Kids to the unit in Birmingham – which is one of only two centres nationally commissioned to provide liver transplants to children – for assessment last week. And she was called back sooner than anyone could have expected. She flew to the hospital by air ambulance with her mother and grandmother in the early hours of yesterday.
Holly’s family, including sisters Kellyanne, 17, nine-year-old Chloe and brother Dale, 14, were all anxiously waiting at home.
Ms Harrison said: “They just want their little sister to get better. She’s such a beautiful, happy thing, they think the world of her, we all do.”
Gillian Smith, director of the Royal College of Midwives, said tumours can often be difficult to detect in young children and it was positive it had been diagnosed.
Ms Smith said: “The operation itself will always be a bit touch-and-go to make sure they don’t reject the liver but hopefully it will go well for the wee one.”
More than 1000 people have joined a group on Facebook, Helping Wee Holly, to track her progress throughout her treatment and help raise money. It was set up by family friend Teresa Robertson, 32, who is in and out of hospital with the lung condition emphysema and said she knows how difficult it can be to juggle a serious illness and childcare.
She said the community response had been incredible, raising £8000 so far for Holly and her family, to cover anything from childcare to accommodation and transport costs while Ms Harrison is away.
Businesses in Niddrie, where Holly lives, have donated auction prizes such as televisions and football memorabilia, while others have given iPads to Holly’s siblings so they do not feel left out.
Mum-of-five Teresa said: “Lots of people wanted to help as it’s so hard what the family are going through.
“Holly’s such a lovely wee girl and been through so much.
“I was so sad when Nyree thought that she was on her own and there are so many people out there who care about her.
“Everyone in Niddrie has rallied around to do things for the family, even from further away in England.
“We are all just desperately hoping she gets through it and thinking of her. ”
Kellyanne is posting regular updates on the page and thank people for their support, leading to hundreds more good luck messages.
NOT A CURE BUT A TREATMENT
EVery year in the UK approximately 100 children or young people will receive a liver transplant, according to the Children’s Liver Disease Foundation.
Children may receive a split liver – where the liver is divided into two halves: usually the bigger portion is used for a larger adult and the smaller portion for a child or a small adult. All livers are considered for splitting.
Livers for infants are in short supply and the use of partial grafts from deceased donors now accounts for almost one-third of the transplants in children, according to research.
The five-year survival for pre-planned liver transplantation is approximately 85 per cent in the UK.
Children and young people who undergo a liver transplant will require monitoring and daily medication for the rest of their lives to prevent them from rejecting their liver. Transplant is not a cure, it is a treatment programme.
The average waiting time for a liver transplant is 142 days for adults and 78 days for children but can be shorter if they are on the high priority list.
More recently, parents have also been able to consider donating part of their liver if they are a suitable match.
In 1999, 18-month-old Luke Bettelley became the first British person with acute liver failure to receive a transplant from a living donor – his mum.
The British Transplantation Society says outcomes following a liver transplant are far better than when the first was carried out in the UK in 1968.
TINY EMILY SHOWS SIGNS OF PROGRESS AS MUM GIVEN HELP TO VISIT HER IN HOSPITAL
TINY Emily Cressey is showing signs of progress and her family is getting to see her in hospital thanks to the kindness of well-wishers.
Born at 24 weeks at the ERI, Emily is pleasing doctors by gaining weight and taking rests from the ventilator which has helped her to breathe.
She has grown from 1lb 3oz to 1lb 7oz since she was born on February 27 – much to the delight of mum and dad Claire Cressey and Alan Coultas.
Emily was rushed to the Capital from her home in the Borders when Claire went into labour at just six months.
The News told how her parents were struggling to make the 100-mile round trip to visit Emily since her dad’s paternity leave finished, because his job means he works away on a wind farm.
But the generosity of people in the Capital and their home town of Coldstream has allowed Claire to go and see her little miracle twice in recent days.
The local branch of the Royal Voluntary Service, an organisation which specialises in helping older people, is trying to co-ordinate members to provide the family with transport to visit Emily.
Yesterday, Claire, 34, posted new pictures on Emily’s Journey – a page documenting her progress on Facebook.
She put: “Emily having a little nap this afternoon, seems all this growing is hard work.
“She’s doing well, not a lot to report, no changes, but that’s the way we like it. No wonder she’s putting weight on, her feeds are 5.1ml per hour.
“Have to say a massive thank you to a wonderful, kind lady from the next village for the lift to see Emily, if it wasn’t for your kindness we wouldn’t of been able to visit. THANK YOU.”
Emily’s family wanted to thank the “amazing staff” at the Simpson unit for helping to keep their daughter alive.
Thousands of readers have offered their best wishes, while many others shared their “miracle” stories to lift the spirits of her family.
Margaret Taylor wrote: “Glad to hear that Emily has had a good night. She’s a little fighter and all the love you give her she will feel. I was a nursery nurse on a special care baby unit over 45 years ago and the technology then was not as good as it is now, she has so much help and she is in safe hands. My love to you all.”
Emily is expected to remain in the care until her due date – June 16. It is hoped she will be transferred to a hospital nearer Coldstream before being allowed home.