The parents of a baby who died are demanding answers after discovering he had contracted a common childhood infection and not the rare condition that they were initially told.
Elijah Edwards passed away over a year ago and his parents were told that they had lost their son to an infection so rare he would be the only one in the country to die from it for years, reports Wales Online.
But Joann and Christian Edwards from Mountain Ash have since discovered that Elijah is not the only Welsh baby to have died from the enterovirus infection, and that multiple other babies in Wales had been fighting the condition too.
Public Health Wales (PHW) announced earlier this month that it was investigating a cluster of infections of enterovirus that had led to myocarditis (inflammation of the heart).
The common childhood infection causes a range of symptoms and rarely affects the heart, however, in very young babies, enterovirus can cause severe illness in the first few weeks of life.
The public health body has launched a probe into 10 cases of enterovirus with myocarditis that occurred in Wales between June 2022 and November 2022. One of these babies sadly died.
Elijah was born at Prince Charles Hospital on February 25, 2022 and tragically died at Bristol Children's Hospital 12 days later.
Joann said Elijah's death is not one the cases that is being investigated after PHW informed her that it was outside of the dates of enterovirus season.
The mum says she was "gobsmacked" after learning that other babies had been affected.
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."
Elijah was born healthy, and was discharged from hospital with Joann a day after he was born. Covid-19 restrictions remained in place at that time and no other visitors saw Elijah other than dad Christian, as well as the health care professionals.
Elijah appeared to be lethargic and constipated a few days after coming home, but the symptoms were put down to jaundice.
When he was a week old, he completely stopped feeding so his parents rushed him to A&E, where he was given a diagnosis of sepsis and then bronchiolitis at first. Elijah was then transferred to the University Hospital of Wales, where they picked up stress on his heart.
He was eventually moved again to Bristol Children's Hospital where they picked up the enterovirus, and were told it was a condition that is known to attach to the heart in newborns. 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."
Joann said she was upset and angry at learning other cases are now being investigated in Wales. "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.
"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."
Joann had chased her local health board for the findings of an investigation into Elijah's death. The parents were told they would have the results of the investigation at the end of 2022, but they are still waiting.
However, the health board say their probe is now nearing its conclusion.
The family do not understand why Elijah's death is not being looked at in the timeframe according to Public Health Wales. 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."
Paediatricians in Wales have now been advised on the issue and will continue to consider the possibility of myocarditis in babies presenting with sepsis (blood poisoning).
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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