Baby heart death parents left waiting 14 months for answers

Joann and Christian Edwards say they were "left in the dark" after their son Elijah died from a heart infection

Grieving parents have been left waiting more than 14 months for answers about why their 12-day-old son died.

Elijah was born at Merthyr Tydfil's Prince Charles Hospital on 25 February 2022 and died after being diagnosed with enterovirus and myocarditis.

Joann and Christian Edwards said they were told they would have a report by the end of 2022, but are still waiting.

Cwm Taf Morgannwg health board said its investigation "took longer than initially anticipated" and apologised.

Joann and Christian, from Mountain Ash, Rhondda Cynon Taf, said they were told Elijah's myocarditis was a "one off" but subsequently read about 10 babies, including one who died, getting severe enterovirus with myocarditis across south Wales.

Public Health Wales (PHW) said Elijah's death was not being looked into as part of an investigation into this cluster of cases, as the dates were set at June 2022 to April 2023 to coincide with the enterovirus season.

But it said it would look to include Elijah's death as part of a "wider clinical investigation" of the cases.

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A PHW spokesperson added: "We send our sincere condolences to the Edwards family following Elijah's death, and our thoughts are very much with them.

"However, we are very aware of the case and he has not been forgotten."

Elijah Edwards died after getting enterovirus, a bug similar to the common cold

Elijah was healthy when he was sent home from hospital but was lethargic and severely constipated, which was initially thought to be jaundice.

After five days without pooing, Elijah's parents took him back to hospital.

He was first diagnosed with sepsis, then bronchiolitis.

After being admitted to the University Hospital of Wales (UHW) in Cardiff, he was diagnosed with enterovirus - a bug similar to the common cold that can attack the heart in young babies.

He died at Bristol Children's Hospital on 9 March.

Joann said the paediatric doctor at UHW told her Elijah's chances of getting enterovirus in the UK was "one in hundreds of thousands" and that his death was down to an "unlucky situation".

She added that she and Christian were told an investigation into Elijah's death by Cwm Taf Morgannwg health board would report back by the end of 2022.

"We were led to believe that there wasn't an answer for it happening and we may never have an answer. It left us in limbo."

Joann and Christian were still waiting for the report in May when Joann read a BBC Wales report about a cluster of cases of myocarditis in babies under 28 days old, who had been to UHW between June and November last year.

Elijah was healthy when he was born but developed severe constipation in the days after going home

In shock, Joann said she wrote to PHW to find out if Elijah was part of the investigation, but got no response.

"To be left in the dark made us feel then like as if there's something to hide," she said.

Christian said doctors did "probably everything that could have possibly been done" to save his son.

"It's how he contracted it and this information that has come out now is more the gripe that we've got.

"If there's a investigation going on, obviously we wouldn't mind knowing what is happening."

PHW said: "We would be happy to discuss Elijah's case further with the family if they would find it helpful."

Cwm Taf Morgannwg health board added: "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."

Joann and Christian say they want an investigation into where their son's infection came from

Christian wants an investigation into where where his son's infection came from, which he said doctors believed started about a day after his birth.

Prince Charles Hospital was under Covid restrictions when Elijah was born, so the newborn was only in contact with staff and his parents, who had no enterovirus symptoms.

Christian said: "I wanted to know for my peace of mind, were there more children at the same time as him in that area?

"This could be an opening to see why it happens, could have been prevented, are there more tests they can do before the child's born?"

The couple said they had suffered alone and would like to speak to other parents who have gone through a similar tragedy.

Joann said: "Because we were led to believe we were the only ones, we haven't been able to really discuss this with anybody else that would fully understand."

The most difficult part, Joann added, had been explaining what happened to Elijah's sister who went from "loving life" as a big sister for a week, to losing her brother.

"Every question she's got we try and answer them the best we can," Joann said.

"But we haven't got the answers ourselves let alone trying to explain to a five-year-old."