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The grieving parents of a baby girl say they were abandoned by East Kent Hospitals despite repeated pleas for help with her care.
Thea Reid, from Herne Bay, suffered from a rare genetic disorder, which was only diagnosed after she died from Sudden Infant Death Syndrome in her cot aged 11 weeks.
Her mother Jemma Stephanou found the tot unresponsive on the morning of May 20 and desperately tried to resuscitate her before paramedics arrived, but attempts were unsuccessful.
At an inquest at County Hall in Maidstone, assistant coroner Sonia Hayes recorded death by natural causes but raised concerns about the case after it emerged her parents had continuously sought help in how to care for Thea, who was fed through a tube and had breathing problems.
During proceedings, Ms Stephanou and Thea’s dad Connel Reid said they felt “dumped” as soon as their daughter was born despite her having complex needs and a then-undiagnosed bone condition.
They were told they would have to wait until June for their first appointment with Thea’s consultant Dr Kwok Sean Mun at the William Harvey in Ashford. They say they received no response from Dr Mun on the numerous occasions he was contacted with their concerns. He said he had not been made aware of their attempts to contact him.
The devastated couple, both police officers and who have two other children, finally got a response on the day she died, offering his condolences.
They said they also discovered important tests taken when Thea was born and sent to Great Ormond Street Hospital, had never been received. The results of these tests led to her eventual diagnosis of bone condition Spondyloepiphyseal dysplasia congenita (SEDC) but by this point she had died.
The heartbroken parents say they believe their daughter’s care was not properly co-ordinated between different providers, leaving her to “slip through the net”.
Now, in what is the latest scandal to hit East Kent Hospitals, coroner Ms Hayes has issued a Regulation 28 report, raising issues about communication by the trust. She said although nothing could have been done to prevent Thea’s death, she is concerned that parents of a child with complex needs were unable to get hold of a specialist.
A Regulation 28, which is a prevention of future deaths report, sets out concerns and can request action be taken.
Ms Stephanou says she welcomes the move and hopes lessons can be learned.
“We had a newborn baby with complex needs but we were told nothing could be done until a diagnosis, yet no-one chased the results,” she said.
“If we’d known what it was we could have looked at how to manage it. For example, sleep apnea can be a symptom of SEDC so we would have put things in place, like taking turns being awake to watch her. Instead we didn’t know what it was and when we tried to get help, the consultant wouldn’t respond. We were working blindly.”
Mr Reid says they were never given any reassurance despite having worries about Thea.
“We are not trying to cause trouble for any one individual," he said. "We just want our concerns investigated and addressed, particularly at this time where Covid is seriously restricting the delivery of clinical care.
“Our trust in East Kent Hospitals has been seriously eroded.
“Nothing can bring Thea back or take away the pain of losing her, we just want to know that lessons from the past have been learned and to gain some assurance that in the future the multi-agency net will be cast in such a way that a baby like Thea could not slip through again.”
Ms Stephanou woke at 6am on May 20 to prepare Thea’s morning feed and saw she wasn’t breathing. She said she knew immediately Thea had died but called an ambulance and started CPR. She was taken to the QEQM in Margate but was unable to be saved.
An East Kent Hospitals spokesperson said: “We are deeply sorry that Thea’s family felt they were not given the support they needed following her discharge from the William Harvey Hospital.
“We have worked hard as a trust following the feedback that has been given to us to improve our service.
“We are now including an advice sheet in all discharge packs, which include contact numbers and information so parents and carers can quickly access the service they need if they have worries or concerns about their baby’s well-being.
“From November, we will also be providing a new neonatal outreach service, which will help to support families transitioning from the Neonatal Unit back home.
“We are sorry for the additional distress and upset for Thea’s family and our thoughts are with them at this difficult time.”
