Lancashire mum who lost two children says families face 'shocking' bereavement care
She's co-authoring a study that suggests support needs "urgent" improvement
Last updated 1st May 2025
A Lancashire mother-of-four who lost two children unexpectedly says some families who face the sudden death of a child don't get sufficient support.
Dr Emily Cooper, a senior lecturer at the University of Central Lancashire, lost her son Alexander, and daughter Isabelle, just three years apart to the same genetic condition.
The family were unaware of any underlying health conditions when on Boxing Day in 2021, three-year-old Alexander was taken ill.
Dr Cooper said: "Alexander was a very healthy, happy little boy as far as we knew.
"But on Boxing Day I went out for a walk with with our other son and came back to a police van outside my house; somebody told me that he had had a cardiac arrest."
Three-year-old Alexander was taken to hospital where he was initially made stable, but suffered a second arrest and died later that day.
Dr Cooper said: "The medical staff had no idea why he had he had died; so he had to go for a post mortem, which was absolutely horrendous.
"It was so very sudden and we were thrown into this completely unknown world of police interviews and in-depth discussions about his history."
Neither the post-mortem nor further tests showed anything of note.
It wasn't until the results of Alexander's genome sequencing came back nearly two years later, that they learned he had a genetic mutation that causes sudden cardiac arrests.
The process took around 22 months from start to finish.
Her daughter, Isabelle, was diagnosed with the same condition and died in similar circumstances in September 2024: "We didn't have the same level of investigation with Isabelle because they knew that she had this condition.
"But in terms of the aftercare that we got with Alexander, we had what's called the joint agency response, which involved a full investigation with police involvement."
But she adds that the same care isn't given to all families: "The difference in care is just is just shocking. Some people will literally get nothing.
"No support, no bereavement care and very unsympathetic and poor language choice used by professionals.
"We were we were one of the lucky families really, although there were things that needed to be improved."
Dr Cooper and a team of other experts, are co-authoring a report calling for an improvement in bereavement care for families dealing with the loss of a child.
About 3,000 children die each year in England and Wales, with 30% of these being infants and children whose deaths are unexpected and sudden.
Lead author Dr Katherine Hunt, from the University of Southampton, said: "No family should be left to struggle alone after the sudden and traumatic death of their child.
"The way we care for families in the aftermath of these devastating losses is a litmus test of the compassion of our society.
The research team is also launching a £1.2 million project called Quintet, funded by the National Institute for Health and Care Research (NIHR), to investigate and make recommendations to improve support and care.
The Quintet study is set to provide its report in 2027.