Parents speak of toddler's transplant ordeal as more hepatitis cases found in children

Fiadh had to learn how to walk again after contracting hepatitis, as Health Editor Emily Morgan reports

Another 34 cases of unusual liver inflammation - or hepatitis - in young children have been identified, bringing the UK total to 197.

Most cases are in children under the age of ten, though some teenagers have also been recently identified with the illness.

Many of those affected have experienced vomiting and diarrhoea, and cases have been reported worldwide, with the US saying on Wednesday it was investigating 180 cases.

In the most serious instances, 11 of those children in the UK have needed a liver transplant, including two-year-old Fiadh Castle-Smith, whose parents recounted their nine-day ordeal to ITV News.

“I cried all the time, a woman I knew who was sitting there, I was fine, talking to her and then I’d just burst into tears,” said mother Natasha Castle-Smith, describing the agonising wait for a liver.

'By the time an organ arrives, Fiadh might have deteriorated so far gone'

“At that point you were thinking about recovery, that she’s going to recover herself,” added father Alisdair Castle-Smith, who said the news Fiadh needed a transplant was the “hardest moment” of their time in hospital.

“And then it changed the dynamic to, right, she’s not in a place where she’s going to recover by herself.

“At the end the conversation we had to have... the fact that by the time an organ arrives Fiadh might have deteriorated so far gone.

“I think that was one of the most difficult things, we found that really difficult because you constantly watched the clock.”

What happened to Fiadh?

At the start of April, Natasha noticed that Fiadh’s skin and the whites of her eyes appeared yellow.

Natasha, a nurse, took her daughter to A&E in Dundonald, a town just east of their home in Belfast.

Fiadh appeared yellow in early April.

The medical team there was consulting with doctors at Birmingham Women and Children’s Hospital, one of only three specialist paediatric liver centres in the UK.

After a few days, Fiadh was transferred via air ambulance to Birmingham, where she underwent tests and became listed for a transplant.

Within 72 hours, they’d found an organ donor - but there were moments when her parents feared the worst.

'She can't die like this'

Natasha said: “I remember my friend came down to see me and I just fell apart in her arms, I was like ‘she can’t die like this, what would we do without her?’

“Like when she was first born I remember saying I can’t believe we get to keep her forever, we made this thing we get to keep her, and all of a sudden it was like that wasn’t going to happen anymore.”

During her treatment, Fiadh’s liver condition brought on bouts of encephalopathy, which affects the brain and can leave people confused and disoriented.

Alisdair described her as “like Alice in Wonderland” in those moments, who had gone too far down the tunnel and needed to be called back.

“She was just so far gone in her head that you had to try and talk her back and be like come back to mummy, it’s mummy... it just felt like a switch went and she wasn’t really herself,” Natasha said.

How is Fiadh now?

Natasha says she struggles to believe everything that happened, but is just grateful that her daughter is still alive.

“This is the new normal but any normal is good as long as Fiadh is in it,” she said. “I couldn’t believe it when we found out that we got to take her home.”

Natasha is delighted Fiadh is back home.

Her happiest moment was seeing Fiadh stand up once again by herself, which she likened to her “taking baby steps all over again".

Fiadh will need medication and Natasha says she will have to be careful with where she goes due to her compromised immune system. Her future is now different but they are grateful she has one.

What’s causing the outbreak?

Scientists are still not certain what is causing it, but investigations suggest a common virus called adenovirus could be connected.

Experts investigating the cases ruled out a link with dogs earlier in May.

Calum Semple, professor of child health and outbreak medicine at the University of Liverpool, told a briefing that investigations had found no role for either owning dogs or recent contact with dogs in cases of acute hepatitis.

The UK Health Security Agency (UKHSA) noted previously that around 70% of a sample of affected children had had recent contact with dogs or owned dogs.

Deirdre Kelly, professor of paediatric hepatology at the University of Birmingham and Birmingham Women's and Children Hospital, told ITV News the outbreak may be linked to the pandemic.

"The fact that it is a worldwide phenomenon suggests to me that it must be related to the pandemic and to the lifting of lockdown restrictions towards the end of the pandemic," she said.

"Most of the children who are infected are under five, with a median age of three, so they’re very young children who would have been very isolated during the pandemic.

"Many of them have a virus, adenovirus - which is normally a perfectly harmless virus, which causes mild chest infections - in their blood and it’s not clear whether this virus is a trigger or the cause of the hepatitis."

Professor Kelly suggests three possible reasons for the outbreak

She outlined three possibilities behind the cause of the outbreak:

  • The children may have at some point been infected with Covid, which damaged their livers and made them susceptible to normally harmless viruses

  • Instead of their lives, Covid may have damaged their immune systems

  • Because of isolation from others, some young children may not have developed normal immunity and might have run out of maternal immunity

What should parents do?

Public health officials have advised people to practice good hand and respiratory hygiene, and parents have been reminded to supervise thorough hand washing in younger children, to reduce the risk of transmitting adenovirus.

Parents and carers should be alert to the signs of hepatitis including jaundice - skin with a yellow tinge which is most easily seen in the whites of the eyes.

If a child develops any symptoms they should be kept away from school, and parents should seek advice from a GP.

Why parents should not be excessively concerned

Professor Kelly advises against over-caution, stressing that only a very small number will develop serious symptoms.

"The numbers that are affected are so small and I think one of the best things about the UK is we have very highly centralised and specialised services," she said.

"And there are alerts to all GPs, paediatricians, about detecting this hepatitis, so very early symptoms will be picked up quickly and their families reassured and their children looked after.

"There will only be a very small number who will develop very serious complications and require liver transplantation."

What are the symptoms of hepatitis?

  • dark urine

  • pale, grey-coloured poo

  • itchy skin

  • yellowing of the eyes and skin (jaundice)

  • muscle and joint pain

  • a high temperature

  • feeling and being sick

  • feeling unusually tired all the time

  • loss of appetite

  • tummy pain

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