Heartbroken parents wait 14 months to learn how son died

Tomos' parents say he was full of energy before his death in June 2024

Two heartbroken parents say they are still waiting to find out what happened more than a year after their three-year-old son died suddenly and unexpectedly.

On 2 June 2024 Katie Louise Llewellyn went into Tomos' bedroom to wake him for a family holiday, only to find he had passed away.

A cause of death has not been given and, without an explanation, Katie and partner Aled Wyn Jones blame themselves and question what they could have done differently.

The delay has been put down to a lack of consultant paediatric and perinatal pathologists, with Royal College of Pathologists figures showing there are just two working in Wales.

The Ministry of Justice said it was working to improve the service.

"I'm in self-blame every other day because I don't know why, because it was so unexpected when he passed away," said Katie.

"It was meant to be a happy day that day because we were going to be leaving the morning I found him on a family holiday.

"I just hope with everything we've done we can try and get the answers and that no other family after us will have to suffer like we have, but other families are at the moment."

Katie and Aled, from Carwe, Carmarthenshire, said the wait to find out how Tomos, who was born with Down's Syndrome and Hirschsprung's disease, died, was having a terrible effect on their mental health.

Each time they have asked the authorities, they said they have been told repeatedly there are not enough pathologists.

"Every single time, the answer we get is that there is only one pathologist in our area and he is shared with Bristol, Devon, Wiltshire and Cornwall," Katie said.

"When a child passes away, surely they should have more professionals to be able to take over case loads - one pathologist can't get the job done quick enough.

"We're 14 months down the line - we still don't know. We've got a lot to still do when we do finally find out - because we haven't been able to register his death - and that's hard because we haven't got the answer."

The family were due to go on a holiday the day they found Tomos

The Royal College of Pathologists has previously highlighted a "worldwide shortage of pathologists and in particular, paediatric pathologists" following a number of traumatic experiences for parents.

It highlighted issues including a 10 to 12% vacancy rate for roles in the UK, an ageing workforce with many nearing retirement age, and 60% of consultants who said they felt their department was not adequately resourced to meet demand.

About 21% of paediatric and perinatal consultants are due to retire in the next five years.

Dr Nia Bowen, from Carmarthen, who used to be a pathologist, believes there are other barriers stopping people pursuing a career in the area.

"I think it's quite historical mostly because it tends to be a traditional apprenticeship that has less autonomy for doctors, and it might be a slight turn off that you aren't able to exercise autonomy within your early years as a trainee because that makes you a confident consultant in later years," she said.

"Also because of practical things, the pay is slightly less than most other fields within medicine."

In the meantime, in their grief, Aled and Katie are calling on the authorities to take action.

"Grieving has just been difficult. Everyday is different and now I feel bad for being sad. I feel bad for being happy and trying to carry on," added Katie.

"I think all we want now is the answers and for something to be done, and that other families don't go though what we have."

According to the coroner's office, an inquest cannot be held until results are received from the pathologist.

The Welsh government said responsibility for paediatric pathology lay with the UK government.

The Ministry of Justice said there were significant challenges affecting post-mortem pathology services and that it was working urgently to find a long-term solution to improve the service.