A one-year-old who died of a rare heart condition may have only lived for another three years but was not treated soon enough, an inquest has heard.

"Happy" Archie Squire was labelled a "mystery child" - in reference to his illness - despite more than 10 visits to A&E in his short life.

His parents, Lauren Parrish and Jake Squire, who lived in Dover when Archie sadly died, claim doctors did not accurately diagnose his condition in the lead up to his death at the QEQM Hospital in Margate in November 2023.

The couple say they have endured an "incredibly painful" journey since their son's death, made worse by having to wait for answers.

On the penultimate day of the lengthy inquest at Oakwood House in Maidstone, independent surgeon David Anderson was probed by Coroner Sarah Clarke and legal teams representing Archie’s family.

He admitted Archie’s condition – congenitally corrected transposition of the great arteries (CCTGA) – was incredibly rare and often sees victims die before they reach their 40s.

Most GPs "would never see a case", he said, while hospital doctors "might see one in their working lives", which is a “one in 35,000” case.

“We would not have been advising his family he would have lived a long and healthy life and passed away of old age,” said Prof Anderson.

“We would have been very guarded in our prognosis.

“The majority of cases of CCTGA may not live beyond much more than 40, but those are some who have had normal function and then the deterioration sets in.

“It is extremely unusual for the CCTGA patient to go into cardiac failure at such an early stage.

“On that background, I wouldn't predict that he would make 40 years of age.

“[He might have died] within three to four years, if that.”

Previously, Archie’s emotional family said words "can’t describe" their experience of watching their son die just three days after his first birthday.

They told the hearing they believe there were "failures" in his care, especially in failing to diagnose what exactly was wrong with him in the months leading up to his death.

The family say Archie’s parents only received "vague answers" from doctors who failed to diagnose a precise medical issue with the sick child, who died of the rare condition in November 2023.

A statement from Archie’s heartbroken mother, who has another younger son called Albie, detailed the little boy’s 10 visits to A&E during his short life, along with several other visits to the GP.

Ms Parrish explained that Archie had struggled with symptoms including constipation, breathlessness, vomiting and "failure to thrive" - relating to him not gaining weight or growing as expected - throughout his short life.

She first took her son to A&E in November 2022, shortly after his birth, when "grunting" noises he made in his sleep worsened.

Though he went on to visit A&E nine more times - being seen by several doctors, GPs and nurses - Ms Parrish said medical professionals described Archie as a "mystery child" as they could not establish what exactly was wrong with him.

An echocardiogram was ordered on October 6, 2023, but was not done within two to three weeks as was advised.

Dr Anderson was asked if the delay in obtaining the scan of Archie’s heart in the weeks before he died would have made a difference.

“It would have helped,” he responded.

“I would hope that it would have prevented him from collapsing into the situation from which he couldn't be resuscitated.

“The cardiac silhouette had increased a little more [indicating a heart condition] and that should have triggered a push.”

The day after his first birthday, he was admitted to the hospital from the A&E department with constipation and vomiting.

He died two days later after suffering two cardiac arrests.

On the final visit to A&E at the QEQM on the day after his first birthday, Ms Parrish said: "We had been back and forth seeking medical help so many times. I decided enough was enough."

Archie was fitted with a nasogastric (NG) tube going into his stomach, which the family believe was a "main contributing factor" to him going into cardiac arrest, the inquest was told.

X-rays were undertaken to check if the tube was in the correct place, and Ms Parrish told the inquest Archie’s condition deteriorated after drugs were administered through the tube on two occasions.

On the moment Archie fell into cardiac arrest and rescusitation was attempted, Ms Parrish added: “It seemed like a lot of what was needed was not available to [medical staff].

“Words cannot describe our experience.”

After being told he would be severely brain-damaged with a poor quality of life if he was resuscitated, Ms Parrish and Archie’s dad, Jake Squire, agreed to stop CPR.

A post-mortem revealed the heart failure was caused by isolated cardiac ventricular inversion, where the left atrium enters the right ventricle and vice-versa.

The family said in a statement: “We believe there were failures to recognise a poorly child not just in the hours leading up to Archie’s death, but also in the months before.

“Concerns were raised on many occasions about Archie’s breathing.

“We believe there have been missed opportunities to prevent his death. We feel it is our duty to raise these in the form of a complaint, in the hope that no other child dies unnecessarily.

“We believe that lessons are not being learned. We feel compassion is still lacking.

“Archie’s parents raised health concerns relating to his breathing.

“They were often left with vague answers and little treatment, which never led to long-term recovery.

“Why weren’t parents’ concerns listened to on numerous occasions? If he was poorly, why wasn’t this recognised?”

The inquest is expected to conclude tomorrow.