The dad of a three-year-old girl who was put in a coma and had a matter of hours to live after contracting hepatitis, gave part of his liver to her to save her life.
Lola-Rose Raine, from Gravesend, fell ill in February with what her parents thought was just a 24-hour sickness bug.
Dad Alan talks about how they discovered Lola-Rose was ill
She seemed to recover, but three weeks later she began being sick again, her stools were an odd, grey colour and the back of her eyes were turning yellow.
Dad Alan Raine said: “I did not think anything of it, kids get sick all the time. I cleaned her up and gave her some medication.
“The next morning at around 10 o’clock she was stood at the end of the bed and the whites of her eyes did not look a normal colour.”
Lola-Rose’s mum Jane McNeill, 25, was studying to be a nurse and immediately recognised the signs as jaundice, which could not be treated at home.
The pair rang NHS 111 and went to the Urgent Treatment Centre in Gravesend where medics confirmed the diagnosis but could not tell what had brought it on.
They were transferred to Darent Valley Hospital in Dartford where doctors ran blood tests on Lola-Rose’s liver function, which came back as abnormal.
She was struck down by a mysterious illness. Picture: Alan Raine
The family spent five days there and all the while the youngster’s tests were coming back increasingly worse, but still nobody knew why.
Lola-Rose was then blue-lighted to King’s College Hospital in London for specialist treatment on March 17.
Doctors ran around 20 different tests and took her INR levels which measure how quickly your blood clots. Normal levels are considered to be 1.1 and higher than four can mean inreversible liver damage.
Her levels started slowly increasing and by March 22, Alan, 27, and Jane were told that Lola-Rose had adenovirus – a strain of the common cold – but was suffering from acute liver failure, a rare side-effect.
There has been a sudden increase in children under 10 suffering from hepatitis – inflammation of the liver usually as a result of a viral infection or liver damage caused by drinking alcohol – which is under investigation by health experts.
Lola-Rose is one of 176 confirmed cases in the UK since January 2022, as of May 10.
She was put into an induced come as her liver failed. Picture: Alan Raine
According to the government website, the usual viruses that cause infectious hepatitis – hepatitis A to E – have not been detected. The cases are predominantly in children under five who showed initial symptoms of gastroenteritis illness – diarrhoea and nausea – followed by the onset of jaundice.
As investigation continues, adenovirus has been the most frequently detected virus.
Three days after being admitted, Lola-Rose was taken to ICU and put into an induced coma when her INR levels had increased to more than 4.1.
Alan who works in security said: “You do not have a real sense of time. The days go really quick or really slow. It felt like forever. It was horrible.
“It looked like our little girl had died and they were preparing her for a coffin.”
Lola-Rose’s liver had started to shut down and was not filtering her blood, meaning the toxins usually removed were going to her brain.
Lola-Rose needed urgent surgery. Picture: Alan RaineDad Alan gave his daughter part of his liver. Picture: Alan Raine
Jane added: “We wanted to sit there all the time. She was not responding to us. I sat there for hours one day and I just stared at her wanting to see her move knowing she would not.”
Lola-Rose was immediately put on the urgent transplant list but her parents started considering live body donations.
Despite being a blood match, Jane was unsuitable for surgery but fortunately Alan was, and able to give his daughter part of his liver on March 30. In what usually would have been a six week process, Alan was ready for surgery in six hours.
Jane said: “She would not have lived through the night while waiting for another transplant. She would not have made it another day. It was a matter of hours. We needed to do it or we were going to lose her.”
As of May 3, 11 children out of 163 confirmed cases had received a liver transplant.
Lola-Rose has now returned to her home in Fenners Marsh after almost six weeks in hospital and is enjoying life again and playing with her five-year-old sister Natalie.
Lola-Rose and Alan are now both well after surgery. Picture: Alan Raine
The three-year-old will be on immunosuppressants – medication that suppresses the immune system so it does not reject or attack the transplanted liver – and steroids – to help boost her immune system for when she may fall ill – for the rest of her life.
The family are now using their story to raise awareness for the hepatitis symptoms to look out for. According to the NHS website these are:
muscle and joint paina high temperaturefeeling and being sickfeeling unusually tired all the timea general sense of feeling unwellloss of appetitetummy paindark urinepale, grey-coloured stoolsitchy skinyellowing of the eyes and skin (jaundice)
Alan said: “I did not think anything about the colours of her eyes. We were lucky to pick up on it and act straight away.
“It does not matter if it is nothing, if you think something is wrong you should seek advice.”
Lola-Rose is a fighter and is now back home. Picture: Alan Raine
To find out more information on the increase of hepatitis in children, visit the government website here.
The toddler has now been chosen by organisers to lead the parade at Northfleet Carnival as carnival queen as the event returns on June 25 which she is extremely excited about.
Ben Jolly, secretary for the committee, said: “This was probably one of the easiest decisions that we have had to make this year. We asked Jane and Alan as soon as we knew that she was out of hospital and at home and was told that she was really excited when she was told the news.
“She is a massive example to everyone with everything that she has been through, as she has never given up. She is an example that regardless of what you face in life you can still come through on the other side.”
The carnival will leave Springhead Industrial Estate at 1pm and head up towards Pepperhill Roundabout, along Hall Road then down Perry Street, onto Pelham Road before heading towards the town centre. If you would like to volunteer and get involved in the event, email [email protected]
Gravesham Human Interest Kent Alex Langridge