BEING told your child has just hours to live is every parent’s worst nightmare.
But it happened to Alan Raine and his partner Jane McNeill, 25, last month when their daughter was struck down by a mysterious case of hepatitis.
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Little Lola Rose, three, is one of almost 200 hundred children across the world, from Japan and Israel to the US and Netherlands, to contract acute hepatitis inflammation of the liver — from an unknown origin.
“It felt like my heart was ripped out,” says 27-year-old security worker Alan from Gravesend, Kent.
“Just days before she’d been singing Frozen songs and getting up to mischief. Being told she might die just seemed impossible.”
Last week the number of UK cases stood at 145 – 108 in England, 17 in Scotland, 11 in Wales and nine in Northern Ireland.
No British children have died, and ten have had liver transplants.
Hepatitis is rare, if not unheard of, in healthy children. Lola Rose is one of ten UK children, and 17 globally, who nearly died and needed a liver transplant.
The World Health Organisation said one child has died. Simon Taylor-Robinson, professor of translational medicine and hepatologist at Imperial College London, says very little is known about the condition.
‘Seeing her so frail will stay with me for ever’
He says it is “unlikely” it is a new virus, but it could be a “mutation of a known virus”, adenovirus 41F, which normally causes the common cold.
“We know about 70 per cent of the cases globally have involved adenovirus 41F,” says Prof Simon, “but that number isn’t large enough to confirm that theory.”
Covid lockdowns may be another culprit. He adds: “Under normal circumstances our immune system can cope with this virus and get rid of it without it harming our liver.
“So there’s the question being asked about how much lockdowns — and not having little children mixing with one another and building their immune systems — have played a part.”
Lola Rose fell sick in March. “It was just a tummy bug and some sickness so I didn’t think much of it,” says Alan.
“It was Jane, who’s a student nurse, who spotted that the whites of her eyes were starting to turn yellow.”
The couple called 111 and were told to take their daughter to their local Darent Valley Hospital. Just four days later, she was taken to King’s College London in an ambulance as her condition deteriorated.
“They took bloods and they came back abnormal,” says Alan.
“No one could tell us why or what was going on. We were told her liver function was deteriorating but not once did we think she’d get so bad to be close to death.
“We presumed that because she was in hospital she’d be treated and get better.”
THE SYMPTOMS
PROFESSOR Simon Taylor-Robinson says: “If a parent reading this has a child particularly of nursery age who has had sickness, diarrhoea, abdominal pain or has been a bit off their food, it’s worth calling 111 or making an appointment with your GP to get checked.
“They know how to examine and what to look for in regards to this condition so don’t delay as what we do know is not being diagnosed early can lead to complications.”
Keep an eye on any potential symptoms your child has, including:
- Dark coloured urine
- Itchy skin
- Yellowing of eyes or jaundice
- Pale grey stools
- Muscle and joint pain
- High temperature
- Nausea and vomiting
- Loss of appetite
- Tiredness
- Abdominal pain
Just 12 days after Alan and Jane called 111, Lola Rose was put into an induced coma as the mysterious virus ravaged her body and damaged her liver beyond repair.
“Neither of us could watch as she was put into the induced coma,” recalls Alan.
“By then she was so sick it was like seeing a stranger’s child in bed.
“Lola’s just so full of mischief normally. She’s got a big sister, Natalie, who is five, and the pair of them are always having fun and racing around.
“Seeing her so sick and frail is an image that will stay with me for ever. She was awake but barely, and I remember telling her she was going to go to sleep for a while and when she woke up she’d be all better.
“I couldn’t tell her the truth — that we didn’t know if she’d ever wake up again. I felt like my heart was being ripped out as she was wheeled away to be put into a coma.”
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The next day, Saturday, March 26, Alan and Jane were in- formed a liver transplant was her only hope of survival.
“We were told ammonia in her blood was causing her brain to swell. It just seemed so surreal,” says Alan.
“How could she be so sick? How could her liver be failing and how could doctors not know what she was battling?”
While Lola Rose was officially placed on the transplant waiting list, Alan and Jane swung into action.
The pair were tested to see if they were a match — and while Jane wasn’t, Alan was.
“We were told how lucky we were that not only was I a match but that the tests were carried out so quickly,” says Alan.
“It can take up to six weeks to find a match apparently, but we didn’t have that kind of time. We’d already called friends and family, though, and we had around ten people who were willing to see if they were a match.”
Just five days after going on to the transplant list, Lola Rose and Alan were wheeled into the operating theatre, where Alan was able to donate a portion of his liver to save his baby girl’s life.
“I wasn’t scared at all going into theatre,” says Alan.
“I didn’t care if I survived the surgery or not — I’d have given her my whole liver and my life to keep her alive. I just needed to save her, that’s all I felt.”
After six hours of surgery, Alan was taken to intensive care where he was brought round and told the surgery had been a success.
“I was wheeled down to see her in paediatric intensive care,” he says.
“I was on morphine and all sorts but the relief was incredible. Knowing she’d be OK was just the best feeling in the world.”
While Lola only returned home from hospital last Tuesday, Alan says the family are still struggling to come to terms with what happened.
“It’s the not knowing what it was that’s scary,” he says. “She literally went from a completely normal and Disney-loving little girl to nearly dying in just days.
“We were told if we hadn’t called 111 when we did, she might not have survived.”
WHAT YOU NEED TO KNOW
When and where did the outbreak start? The first cases were reported in January in Scotland.
On April 5, the World Health Organisation (WHO) was notified of ten cases of severe acute hepatitis of “unknown aetiology” in children aged under ten across central Scotland. By April 8, the UK had identified 74 cases.
Laboratory testing revealed that none of the cases involved the UK’s usual hepatitis viruses (A, B, C, E, and D).
How many cases have there been? Globally, around 190 cases have been reported – 140 of them in Europe, 111 of which in the UK. So far, 17 children, aged one month to 16 years old, have become so sick they have needed liver transplants.
Sadly, there has been at least one death, according to the WHO, but it was not disclosed where the death occurred.
A second suspected death has been reported in Wisconsin, US.
Does hepatitis usually affect children? It is rare but does happen. Prof Will Irving, Professor of Virology, University of Nottingham, says: “The occurrence of severe hepatitis in a young child is not a new phenomenon. There have been occasional cases presenting over the years, with no underlying cause identified.
“What is unusual is the increased number of such cases seen over a short space of time since January this year.”
While Alan and Jane hope to get answers soon, Professor Simon says scientists from across the globe are battling to understand what the virus could be.
He reveals: “All the known cases in the UK are being reported to Public Health England.
“Research is going on right now to identify exactly what we’re looking at because, while it’s a type of hepatitis, it’s not A, B, C D or E, which are the types we know about.”
“Most reported cases have experienced diarrhoea, vomiting and abdominal pain in the weeks before falling ill with the hepatitis-type symptoms and so the Government have made GPs aware to look out for these symptoms in young children.
“It’s an example of the NHS working exactly how it should. It’s by no means time to start panicking, because everything is in place to help.”
While little Lola Rose will be on drugs for the rest of her life, so that her body doesn’t reject Alan’s liver, the family are still worried about any long-term effects from her exposure to hepatitis.
“No one’s able to tell us much,” says Alan. “We know it was the common cold virus, but no one knows why Lola and some other children are getting so sick.
“They’ve told us what happened to Lola is incredibly rare and that she’s very unlucky, but we know cases are rising, not just in the UK but across the world.
“Her symptoms were mild and just like lots of bugs kids get at her age, which is why we’re talking about what happened to Lola.
“If we can stop one family from going through what we have been through in the last seven weeks it’ll be worth it.
“We were hours away from losing our daughter — I don’t want any other parents to experience that feeling.”
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