Hepatitis UK: Three-year-old girl stuck down by mystery illness sweeping world

A three-year-old girl struck down with the mysterious hepatitis sweeping the world has been spared death — after receiving part of her father’s liver.

Lola-Rose Raine, from Gravesend, Kent, is one of nearly 200 children to fall ill with the same liver disease that has perplexed experts in recent months.

After initially writing her vomiting off as just a stomach bug, Lola-Rose’s parents grew concerned when her eyes developed a yellow tinge — a hallmark sign of hepatitis.

Hospital scans revealed her liver was not working normally and she was taken to a specialist unit at Kings College Hospital in London in March.

But days after arriving her liver began to fail, with medics forced to put her in a coma. Doctors warned she could have died within hours unless they found a last-minute transplant. 

Her father Alan Raine, 27, who works in security, told MailOnline that it was like ‘literally watching our little girl die before our eyes’ as he waited to hear if his liver would be a match. He donated part of his liver to save his dying daughter on March 30 in an operation that lasted seven hours.

Despite being told of the risks, Mr Raine said it was a choice between donating his liver or having his heart ‘torn out’ watching his child suffer.

Almost a month after the surgery, Lola-Rose has made a full recovery and will be discharged from hospital this week. 

Alan Raine, from Gravesend, Kent, was told he could donate part of his organ to save his daughter Lola-Rose just hours before doctors feared she would die because of the inflammatory liver condition

Now, four weeks after her surgery, Lola-Rose is back to being herself, singing Frozen songs at three in the morning ‘for all the ward to hear’, Mr Raine said

The World Health Organization said it has received reports of at least 169 cases of ‘acute hepatitis of unknown origin’ from 12 countries as of Saturday. Two further cases were identified in North Carolina, US, since then

So far ‘around 190’ unexplained cases of hepatitis have been identified across the world, the European Centre for Disease Prevention and Control announced today.

Data on cases varies, with the ECDC admitting that these figures are not yet precise.

The WHO announced on Saturday 169 cases of ‘acute hepatitis of unknown origin’ have been detected in 12 countries since last October, according to the World Health Organization (WHO).

A further two cases were diagnosed in North Carolina US after that.

The ECDC toll also slightly undercounts the figures in the UK. 

The vast majority of cases have been among children aged five and under, and so far one youngster has died and 17 have needed critical liver transplants.

Some 114 have been spotted in the UK, however experts have told MailOnline they may be the ‘tip of the iceberg’ as many symptoms are missed. 

Three-quarters of cases in the UK have been linked to adenoviruses, which usually cause the common cold or a stomach illness.

However, if someone’s immune system is unable to fight off the virus, it can develop into hepatitis.

The UK Health Security Agency said a lack of exposure to common infections during lockdown and social distancing may have left more children vulnerable to viruses.

Lola-Rose’s mother, Jane McNeill, a student nurse, grew concerned when her daughter’s her eyes had gone yellow.

She was taken to hospital in Darent Valley Hospital in Kent where tests revealed her liver was not functioning properly.

Puzzled as to why the youngster’s organ was not working, she was sent to liver specialists in London on March 17.

There, she was diagnosed with hepatitis and her parents immediately ‘thought the worst’, Mr Raine said.

He did not know the condition could be found in children — who rarely contract the condition. 

Mr Raine and Ms McNeill were given a glimmer of hope on March 21 when doctors discovered her hepatitis may have been caused by adenovirus.

The virus is treatable and doctors gave her medication made up specifically for her given on an IV drip.

Mr Raine told MailOnline: ‘At the time we thought “fantastic, they’ve got the problem”.’ 

But two days later, doctors said she was still deteriorating and warned she would be moved to intensive care within 48 hours.

She was put in an induced coma that day because her liver was not sending toxic ammonia to her kidneys to be filtered out the body. This meant the toxins were reaching her brain, causing it to swell up.

Mr Raine said: ‘We were literally watching our little girl die in front of our eyes. I have no idea how else to explain it. It was like someone’s reached into your chest and torn your heart out. I was thinking “there’s nothing you can do”.’ 

Lola-Rose was diagnosed with hepatitis in March this year after she started vomiting and Mr Raine’s wife Jane McNeill, a qualified nurse, noticed her eyes had gone yellow

Her condition continued to worsen and she was put on the urgent liver transplant list the following day. 

Mr Raine and his wife both volunteered to donate their livers immediately, but had to wait three days before they could start the living donor process.

By then, Lola-Rose was on the edge of her life, but tests found Mrs McNeill could not offer her liver to donate to her, despite being a blood match.

Mr Raine only found out his liver was a match later that day, when doctors had given his daughter hours to live.

He told MailOnline: ‘They could have told me I wasn’t going to survive the surgery and she was, and I would have gone straight ahead with it.

‘All I was thinking is — she’s going to get better and we can help.’

Mr Raine went under the knife the following morning to give Lola the left part of his liver.

After her surgery, the yellowness in her skin faded almost immediately and her blood tests returned to normal within 48 hours. 

After a liver donation, the organ starts to regenerate back to its original size in both the recipient and donor, leaving both with healthy, functioning livers. 

Now, four weeks after her surgery, Lola-Rose is back to being herself, singing Frozen songs at 3am ‘for all the ward to hear’, Mr Raine said.

She has recovered her strength after weeks of physiotherapy with her doctors and her bubbly personality has returned.

Lola will be on medication for the rest of her life to stop her body rejecting the new organ.  

She does not yet understand what she went through, other than that she ‘has a big scar across her belly like her daddy’, he said.

Some 114 UK hepatitis cases have been spotted since the first cases were publicly recorded in Scotland at the end of March. 

Hepatologists told MailOnline they believe the official numbers may be just the ‘tip of the iceberg’ because many parents may brush off the warning signs.

Professor Simon Taylor-Robinson, a hepatologist from Imperial College London, told MailOnline: ‘I think there are more cases out there. 

‘I’d imagine there are more cases than have been reported — but they are likely to be less severe.’

But he added there is no reason to panic because in ’99 per cent’ of cases the liver is able to regenerate and the chances of needing a transplant or dying because of the condition are low. 

UKHSA data shows there were 111 confirmed and possible hepatitis cases in the UK as of April 20. Of these, 81 cases were in England (white bars), 14 were in Scotland (blue bars), 11 were in Wales (red bars) and five in Northern Ireland (green bars). Between January 21 and April 18, 10 children have required liver transplantation

Hepatitis cases have been tested for other pathogens when they were admitted to hospital. Adenovirus (far left bar) was the most common pathogen detected in 40 of 53 cases which have been tested, followed by SARS-CoV-2 (second bar)

Health chiefs linked Covid and adenovirus data. This shows there has been a rise in both preceding adenovirus infections (grey bars), co-infections (navy bars) and secondary infection (blue bars)

UKHSA data shows positive adenovirus tests from one to four-year-olds (green line) are higher compared to the previous five years.  Between November 2021 to March 2022, approximately 200 to 300 cases of adenovirus were reported per week compared to 50 to 150 cases per week in the same period before the pandemic

Professor Alastair Sutcliffe, a paediatrician from University College London, told MailOnline mounting cases are ‘a concerning and depressing situation for families’ but parents should not fear. Up to 20 per cent of hepatitis cases have no known cause.

He said: ‘What is for families to consider [is] if their child develops jaundice after the first few months of life they need medical attention fast.

‘But that is true of any child who develops jaundice after the first few months of life so is not new advice. With one death and no known cause life should continue as before. Nothing is more fearful than fear itself.’

None of the cases have been caused by any of the five typical strains of the virus — hepatitis A, B, C, D and E. 

Data gathered has ‘increasingly’ suggested that the rise in severe cases of hepatitis may be linked to a group of viruses called adenoviruses, the UKHSA said.

Adenovirus was found in 75 per cent of the sickened children who were tested for it. Sixteen per cent had Covid.