Heartbreak as toddler Raffy Holliday, 3, dies after catching herpes as parents share devastating warning
A TODDLER has died after catching herpes - as his devastated parents share a heartbreaking warning.
Three-year-old Raffy Holliday's mum Imogen, 35, from Deal in Kent, wants the NHS to do more to protect transplant patients.
Raffy died at Great Ormond Street Hospital (GOSH) in March after suffering inflammation of the brain caused by the human herpesvirus 6B (HHV-6B).
HHV-6B is one of nine strains of the herpes virus.
It causes the common childhood illness exanthema subitem, also known as roseola or sixth disease, which shows up as a mild fever and rash.
Some 70 per cent of children will get HHV-6B by the age of three, with most developing a natural immunity that stops them falling ill again.
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Yet further sickness is common in transplant patients and can be fatal for those with weakened immune systems.
AT RISK
Raffy, who was undergoing treatment for leukaemia and had received a bone marrow transplant, lived with the active virus for two years before it took his life.
After his transplant in 2020, he was tested on a weekly basis for three other strains of the human herpes virus - Epstein Barr which causes glandular fever, cytomegalovirus which causes mononucleosis, and adenovirus which causes the common cold.
Imogen says she was told by medics he would not be routinely tested for the HHV-6B strain unless he became neutropenic – when a type of white blood cell called neutrophils drops below a certain level, severely weakening the immune system.
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The toddler was lacking in T-cells, another type of white blood cell which helps to protect the body from infection, following his transplant.
Imogen and her husband James, 32, want the NHS to add HHV-6B to the list of standard weekly viral tests carried out on patients post-transplant.
She stressed there is no suggestion Raffy contracted the virus in hospital as it is incredibly common among children.
The mum-of-four said: “Raffy didn’t have an immune system. He didn’t have anything to fight the virus off. It progressed from his blood into his organs and became very dangerous.
“HHV-6B is the most commonly reactivated form of the herpes virus post-transplant, so I can’t understand why they don’t test for it. It’s frustrating.
“The hospital told us they don’t normally see HHV-6B do what it did to Raffy, but it can and it did. We don’t have our son anymore because of it.
“You can’t prepare for losing a child. You don’t imagine it will happen to you. It shouldn’t be our reality but sadly it is.
“We want people to understand the severity of this virus. It’s opportunistic and it isn’t cell specific. It will infect and take over all kinds of different cells. And it can live dormant in the body.”
At one point after his transplant Raffy went for more than seven months without being tested or monitored for HHV-6B, Imogen claims.
During this time he suffered from ulcerative colitis, gut bleeds, external ulcers, mouth sores, two bouts of pancreatitis, a blood clot, death of tissue in the spleen, a bleed between his brain and skull, and seizures.
'SENSE OF COMFORT'
The mum-of-four now wants people to sign her petition, which she will present to the NHS when it hits 10,000 signatures.
She hopes the 'Red Duck' campaign, named in honour of Raffy’s favourite colour and animal, will raise the profile of HHV-6B among both medical staff and the public.
The stay-at-home mum, who has another toddler and two teenage sons, said focusing on the campaign has helped the family to deal with their grief.
Imogen added: “We found that channelling our grief into something positive – where we can still talk about Raffy all the time, share his story, and stop the same thing happening to someone else – gives us a sense of comfort.
“Not having him around anymore will never feel right but it’s a case of getting used to a new normal.
“Some days are harder than others. Some days I can’t think for the tears. But this is a really healthy distraction.”
GOSH said it followed European Conference on Infections in Leukaemia (ECIL) guidelines.
A GOSH spokesperson said in a statement: “We would like to express our heartfelt condolences to Raffy’s family.
“We are aware that the family have concerns, which we are taking seriously, and we are communicating with the family about these concerns.
“Many of the children we see at GOSH have complex and rare illnesses, but however complicated their treatment is, we always endeavour to get things right for the children and their families.
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"We are committed to learning from every single patient that we treat, and when we can improve, we share this openly and honestly with the family.
“Our thoughts remain with Raffy's family during this difficult time.”
What is Herpesvirus 6 (HBLV/HHV-6)?
Herpesvirus 6 (HBLV/HHV-6) is common in young people with a lowered immune system.
Some 90 per cent of humans are infected within the first three years of life.
It causes roseola infantum in children, which usually shows up as a temperature and rash.
It has historically been called "baby measles" because a key symptom is a rose pink rash around 5mm wide with a surrounding halo.
The rash, which appears and spreads outwards from a child's chest, usually lasts between one and two days.
Usually, patients get better naturally after around seven days.