Doctors told the parents of baby Elijah Edwards he had been lost to an illness so rare it was probably he would be the only death from it in the country for years. But just over a year after their son's death in Bristol, Joann and Christian Edwards from South Wales learned Elijah is not the only Welsh baby to have died from the illness - 15 infants across South Wales and the South West of England had been diagnosed with the usually rare disease.
Medical experts are investigating a series of infections of enterovirus with myocarditis (inflammation of the heart). Enterovirus is a common childhood illness, not unlike the common cold, and most children recover completely after infection. However, in some cases of infection involving very young infants, it can cause serious illness within the first few weeks of life.
Public Health Wales is investigating 10 cases of the illness occurring between June 2022 and November 2022. One of these babies sadly died.
Read more: Parents warned of 'usually mild' bug making deadly rounds
12 days after being born at Prince Charles Hospital in Merthyr Tydfil, on February 2025, Elijah sadly died at Bristol Children's Hospital. Within a few days of being at home, Elijah was lethargic and constipated, but the symptoms were put down to jaundice. At a week old, he stopped feeding entirely and his parents rushed him to A&E.
Elijah was first diagnosed with sepsis, then bronchitis. The baby was transferred to the University Hospital of Wales where strain on his heart was picked up, before being diagnosed with enterovirus at Bristol Children's Hospital. Joann and Christian were told it was a condition which would attach to the heart of newborn babies.
The World Health Organisation (WHO) says cases of Enterovirus are "usually mild" but can affect infants more severely than older children. It says: "The reported incident represents an increase in both the number and severity of enterovirus (coxsackieviruses) infections in infants under the age of one month. There is increased morbidity and mortality associated with the current incident."
It also stated, prior to June 2022, two other similar cases had been identified in six years.
When she heard the news that other babies had been affected by the condition, Joann said she was "gobsmacked". She said: "We were asking loads of questions. 'Where this sort of thing comes from? Any other newborns like this?' And basically we were told no, probably two to three other children in the last few years. We were led to believe that we were a one off. He was a very unlucky, a very unlucky case, and that we may never know the answer as to where or how he contracted it."
She explained: "The consultant said it was very likely he contracted it within 24 hours of being born. I had never heard of it before. But we still don't have any answers. It has been hard. With my daughter, if we didn't have her, I don't know how we would have survived it, to be honest. When you have another child, you have got to keep going for them."
10 cases of the same condition are being investigated by Public Health Wales - but Elijah isn't one of them. Joann says they were told his infection took place outside of enterovirus season.
"All this time we've been kind of ignored and told you're on your own, it is something that has just happened to you, and all of a sudden this has come out and actually this has all happened on our doorstep," she said. "I would have appreciated it a lot more if they had contacted us in advance. Just to let us know it was going to come out."
Elijah's family believe there to be a link between his infection and the 10 other babies who contracted the illness. Public Health Wales said that Elijah's death was not being looked at as it did not coincide with the enterovirus season. Joann said: "I just find it really weird because we're talking a really small gap from like a scientific point of view when trying to find a link as to why this has happened. I can't see why you would narrow it down. I know you see an enterovirus season, but clearly if he had it in March, February, then it is possible to have it outside our season.
"I just think it's even more significant because obviously there's more than one child, more than one born that's died. Me and my husband have struggled with it because we were told kind of all the way through, you were the only one, you were the only one. It's quite isolated and you can't really speak to other people. Just to think that your baby has died of basically a common cold is hard to get your head around."
Public Health Wales (PHW) is leading the investigation and is working closely with the paediatric team at the Children's Hospital for Wales. WalesOnline reports Welsh paediatricians have been advised on cases and will continue to consider consider the possibility of myocarditis in babies presenting with sepsis.
A spokesperson for Cwm Taf Morgannwg University Health Board said: “Having taken longer than initially anticipated, the investigation into Elijah’s very sad death is nearing conclusion and we sincerely apologise to his family for any failures in our communication with them throughout this process. We will share the findings of our investigation with the family as soon as is appropriate.
"The death of a child is deeply tragic and we express our heartfelt condolences, as well as an offer of support, to Elijah’s family as they continue to come to terms with their loss.”
A Public Health Wales spokesperson said: “We send our sincere condolences to the Edwards family following Elijah’s death, and our thoughts are very much with them. In developing the terms of the investigation into this cluster of cases of severe myocarditis, the dates were set at June 2022 to April 2023 to coincide with the enterovirus season.
"This means that Elijah’s case is not included in the incident investigation into the cluster due to the time scale being looked at, however we are very aware of the case and he has not been forgotten. We will look to include him as part of the wider clinical investigation of the cases. We would be happy to discuss Elijah’s case further with the family if they would find it helpful.”
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