- Raffy Holliday died at Great Ormond Street Hospital in March at the age of three.
Parents of infants who died of herpes are campaigning for more virus testing in hospitals.
Three-year-old Rafi Holliday was being treated for leukemia at Great Ormond Street Hospital (GOSH). He tragically passed away in March from brain inflammation caused by human herpesvirus 6B (HHV-6B).
It is one of nine strains of the herpes virus that causes the common childhood disease roseola, also known as the sixth disease or rash subitem, which causes mild fever and rash.
About 70% of children become infected with HHV-6B by the age of three. Most people have natural immunity that protects them from future reinfections, but it can be fatal for those with weakened immune systems.
Patients who have undergone medical transplants are also more likely to become reinfected.
Raffey, who received a bone marrow transplant as part of his leukemia treatment, lived with the virus for two years before dying after contracting the active virus.
After the 2020 transplant, he was tested weekly for three other strains of human herpesvirus, Epstein-Barr virus, which causes glandular fever, cytomegalovirus, which causes mononucleosis, and adenovirus, which causes the common cold.
Laffey’s mother, Imogen Holliday, 35, says HHV-6B is a regular treatment unless a type of white blood cell called a neutrophil drops below a certain level, causing neutropenia, a severe weakening of the immune system. He said he was told by doctors that he would not undergo any medical tests. .
This is despite the fact that after the transplant, the 3-year-old lacked another type of white blood cell, the T cell, which helps the body defend against infection.
Mrs Holliday, of Deal, Kent, is now petitioning the NHS to add HHV-6B to the list of standard weekly viral tests for post-transplant patients.
He stressed that the virus is incredibly common among children, so there is no indication that Raffey contracted the virus in the hospital.
“Laffey didn’t have an immune system,” said the mother of four. He had nothing to fight off the virus. It progressed from his blood to his organs, making him very dangerous.
“HHV-6B is the most commonly reactivated herpes virus after transplantation, so I don’t understand why they don’t test for it. It’s frustrating.
“The hospital said they don’t normally see HHV-6B do things like they did to Laffey, but it was possible and they did. That’s why we don’t have another son.
“You can never prepare to lose a child. You would never have imagined it would happen to you. It shouldn’t be our reality, but sadly it is.”
“We want people to understand the seriousness of this virus. It can continue to live in a dormant state.”
Imogen said at one point after the transplant, Raffey was not tested or monitored for HHV-6B for more than seven months.
During this period, the virus caused ulcerative colitis, gastrointestinal bleeding, external ulcers, stomatitis, two bouts of pancreatitis, blood clots, tissue death in the spleen, bleeding between the brain and skull, and seizures.
The mother of four with her husband, James, 32, is taking to the streets to encourage people to sign a petition, which she plans to submit to the NHS when it reaches 10,000 signatures. .
She hopes the “Red Duck” campaign, named after Laffey’s favorite color and animal, will increase awareness of HHV-6B among both medical staff and the public.
A stay-at-home mom with another toddler and two teenage sons, she said focusing on the campaign has also helped her family cope with their grief.
Imogen added, “By turning grief into something positive, it gives us peace of mind that we can always talk about Laffey, share his story, and make sure it doesn’t happen to others.” I found that it made me feel.”
“It never feels good without him anymore, but it’s a case of getting used to the new normal.
“Some days are harder than others. Some days I can’t think of anything in tears. But this is a really wholesome distraction.”
Great Ormond Street Hospital said it is following ECIL guidelines.
“We extend our deepest condolences to the family of Mr. Raffey,” a hospital spokesperson said in a statement.
“We are aware of the concerns the family has, we take them seriously, and we are discussing these concerns with them.”
“Many of the children we see at GOSH have complex and rare medical conditions, and no matter how complex their treatment may be, we always strive to provide the best possible care for the children and their families. We are committed to learning from every patient we treat and if we can improve, we share it openly and honestly with our families.
“Our thoughts are with Laffey’s family during this difficult time.”