Acomb dad on lockdown baby’s death due to rare condition
An Acomb dad has spoken on the tragic loss of his son – who died in lockdown at the age of just four days.
Roman Dinnen was born in York Hospital on April 6, 2020, just two weeks after lockdown was announced.
Born as a “happy and healthy” baby, Andrew Dinnen – Roman’s father – said his son became “very quiet and lethargic”.
“He wouldn’t cry, which raised alarm bells with my wife,” Andrew said.
Shortly after, the parents discovered that Roman had ornithine transcarbamylas (OTC) deficiency – a “very rare” metabolic condition.
Laura, Andrew and Roman Dinnen (Image: Supplied)
Andrew said: “At that time, we were very confused. It was a very rare metabolic condition.
“Roman was transferred from York to the LGI (Leeds General Infirmary), which is where we were given the full explanation of what would come next, that he wouldn’t survive it.”
After passing away on April 10 in Martin House Children’s Hospice, the Dinnen family returned home to grieve – whilst dealing with navigating their four-year-old daughter Erin through a pandemic.
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“The most difficult part of lockdown was the funeral,” Andrew said. “We never had the wake or the celebration of life, my family didn’t come from Scotland.
“There were no exceptions to the rules, and we felt robbed of that experience.”
Andrew said there’s “still some hurt there” across his family over the restricted goodbye.
“My mum couldn’t meet him, let alone say goodbye to him,” he said. “It had a devastating affect on a lot of family, everything went so fast.”
After Roman’s death, the Dinnen family discovered that both Erin, and his wife Laura carried the OTC deficiency.
However, he said Roman’s case brought awareness to the disease, and helped medical professionals research it more.
He said: “We were under the opinion that if Roman’s passing could help save a life somewhere else, we were very much for it.”
Later giving birth to daughter Jorgie, in 2022, and Bonnie, in 2023, Andrew said all of his children are on the hospital’s “radar”.
“If something was to happen to one of the kids they would be treated properly, they get checked four times a year,” Andrew added.
“When Jorgie was born we were still in the tail end of lockdown. There was so much more attention to it [OTC] and everybody was so much more focused on it.
“We’ll forever be in debt to what the doctors have done.”
For the Dinnen family, the five-year anniversary of lockdown is a sombre one.
Andrew said: “We’re very much aware that the memory of lockdown makes a lot of people sit down and laugh about how strange of a time it was. In some respects it was also a terrible thing for everybody.
“Our grieving process felt longer, there was nothing we could do to distract ourselves, but our family as a unit grew so much closer.”
Each year, the Dinnen family visits Roman’s grave, to sing happy birthday.
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