‘Healthy’ boy, 8, who stopped speaking died suddenly days later – but heartbroken parents waited months to find out why

A HEARTBROKEN couple who lost their son to a deadly brain condition only got a diagnosis months after his death.

Louise and Richard Taylor’s “wonderful” son Henry died of encephalitis – inflammation of the brain – just weeks before his ninth birthday.

But doctors were baffled about the cause of his symptoms, which included confusion, anxiety and short-term memory loss, and failed to diagnose Henry with encephalitis before his death.

It was only when the eight-year-old “couldn’t speak” that Louise, 46, a civil servant, and Richard, 47, a secondary school teacher, from north London, realised “something was deeply, deeply wrong”.

They took him to North Middlesex University Hospital on November 18, 2019, before being transferred to St Mary’s Hospital, but doctors struggled to determine what was wrong with Henry.

“They kept on saying it doesn’t make medical sense, it doesn’t make medical sense – nothing is adding up,” Louise said.

“He was running around, playing football, and now he’s unconscious and there’s no sign of illness.”

Henry’s condition deteriorated rapidly, to the point where he suffered “irreversible brain damage”.

He couldn’t speak at all, he just couldn’t say anything

Richard Taylor

Despite undergoing neurosurgery, the couple knew he “wasn’t going to make it”.

They then faced an agonising two days, “watching Henry die slowly”, before they said their goodbyes on November 22 – just four days after first being admitted to hospital.

Now, more than four years on, the couple said they are “still heartbroken” but they want to share their story to help raise more awareness around encephalitis.

They are are urging doctors and parents to educate themselves on the symptoms of the brain condition “because you could save a life”.

It comes after Professor Tom Solomon, chair of Neurology at the University of Liverpool warned Sun Health that hundreds of children could die of the brain swelling disease that's been linked to measles unless more kids are vaccinated.

Louise said: “If someone hears our story, please find out about encephalitis, especially if you work in the medical profession.

“Please log on, find out what the symptoms are, and the causes, because you could save a life.”

Richard added: “We’re still heartbroken and I’m always sad, even when I’m happy. You see the world through this lens of sadness now.

“We’re coping better, year on year, but the sense of loss and sadness is enormous.”

'He couldn't make sense of anything'

Louise and Richard described Henry as a “beautiful, wonderful little boy”, who was full of energy, creative, caring and affectionate, and he loved playing football and the guitar.

He was “fit and active” and had suffered no health complications until this point – and this made his rapid deterioration in November 2019 all the more “shocking”.

In the weeks prior, Henry displayed flu-like symptoms and was occasionally “disorientated”, confused and suffered short-term memory loss, but the couple did not think anything was “seriously wrong”.

They took him to his GP, who suggested a referral to Child and Adolescent Mental Health Services (CAMHS), but it all changed when Henry was suddenly unable to speak.

“We took him to A&E and he couldn’t answer any questions,” Louise said.

“The nurse asked him, ‘Do you know where you are?’ He couldn’t say the hospital. Then she said, ‘Do you know who I am?’ And he said, ‘no’.

“He knew who we were but he couldn’t make sense of anything else.”

A rapid deterioration

After running some tests at North Middlesex University Hospital, doctors could not find any signs of a bacterial or viral infection in his bloods, and they decided to monitor him.

But during the night, Richard said it was “becoming more and more apparent that something was deeply, deeply wrong”.

“He couldn’t speak at all, he just couldn’t say anything, and I was really anxious because I kept trying to talk to him and he just wasn’t able to speak,” Richard said.

Louise and Richard took it in turns to look after their son but on the second day in hospital Henry had a seizure, which was “frightening”, and he lost consciousness.

I just remember lying on the floor and screaming and shouting and beating the walls

Richard Taylor

Staff then “flooded” into the room to stabilise him, and Louise asked herself: “Is he going to die?”

Richard added: “It had gone from something where they were monitoring him, everything seemed relaxed, and then suddenly they were fighting to save his life and it was full-on panic.”

Doctors then discovered Henry had fluid on his lungs, likening it to him having “pneumonia equivalent to the age of a 90-year-old”, and he was transferred by ambulance to St Mary’s.

When they mentioned his lungs, Richard said he almost felt relieved that they had identified the problem – but this, the couple soon realised, was a “false sense of security”.

Doctors then planned for Henry to have an MRI but instead he ended up having emergency neurosurgery, leaving Louise and Richard praying for his survival.

The couple were in a “heightened state of trauma for hours” – and although he survived the surgery, they were then told there was nothing more that could be done to save him.