Advising with empathy and experience

Baby heart death parents left waiting 14 months for answers


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

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

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

Joann and Christian, from 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 said it would look to include Elijah's death as part of a "wider clinical investigation" of the cases.

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. We are very aware of the case and he has not been forgotten. We would be happy to discuss Elijah's case further with the family if they would find it helpful."

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 where he was initially 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 young babies’ hearts. He died at Bristol Children's Hospital on 9 March.

Joann Edwards 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.

She said: "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 this year 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 2022.

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

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

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

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 in contact only 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 happened, could have been prevented, and 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."

She added that the most difficult part 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.

Joann said: "We try to answer every question she's got the best we can but we haven't got the answers ourselves let alone trying to explain to a five-year-old.