The parents of Elijah Edwards have now discovered what really happened to their newly born.
Elijah Edwards died 12 days after birth from a virus that attacked his heart, but he is not the only one.
The infection was said to be so rare that he would be the only one in the country to die from it for years.
However, just over a year after his death, Joann and Christian Edwards, from Mountain Ash, found out that Elijah is not the only Welsh baby to have died with the infection, and that multiple other babies in Wales had been fighting the rare condition.
Earlier this month, Public Health Wales (PHW) announced it was investigating a cluster of infections of enterovirus that had led to myocarditis (inflammation of the heart).
Enterovirus is a common childhood infection which can cause a range of symptoms.
It rarely affects the heart, however, in very young babies, enterovirus can cause severe illness in the first few weeks of life.
PHW is investigating 10 cases of enterovirus with myocarditis that occurred in Wales between June and November 2022. One of these babies died.
He died at Bristol Children's Hospital 12 days later. Mum Joann said Elijah's case is not one that is being investigated as PHW informed her that it was outside of the dates of enterovirus season.
When she heard the news that other babies had been affected by the condition, Joann said she was "gobsmacked".
"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.
Coronavirus restrictions were still in place, which meant no other visitors saw Elijah in that timeframe other than dad Christian, as well as the health care professionals at the hospital.
Within a few days of being at home Elijah appeared to be lethargic and constipated, 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.
He was first given a diagnosis of sepsis and then bronchiolitis. He was transferred to the University Hospital of Wales, where they picked up stress on his heart.
Joann said they were asked if there was a family history of heart conditions, and there was not.
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.
Joann said she was upset and angry to read about the fact that other cases of myocarditis and enterovirus were 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."
She said just a week or two before, Joann had chased Cwm Taf Morgannwg Health Board for the findings of an investigation they promised would happen into Elijah's death.
Joann and Christian were told they would have the results of the investigation at the end of 2022, but they are still waiting.
The health board have said the investigation is now nearing its conclusion.
The family are confused as to why Elijah's death is not one of the ones being looked at in the timeframe according to Public Health Wales, and believe there has to be a link with them somewhere.
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.
Public Health Wales (PHW) is leading the investigation and is working closely with the paediatric team at the Children's Hospital for Wales. Paediatricians in Wales have been advised 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.”