Couple whose son, 8, died of brain condition want to warn every parent of ‘hidden’ symptoms

Symptoms can include an altered level of consciousness, personality or behavioural change, fever and a new persistent headache

Louise and Richard Taylor are urging doctors and parents to educate themselves on the symptoms of encephalitis (PA)

A couple who lost their eight-year-old son to a brain condition but only received confirmation of the diagnosis months after his death from a post-mortem report are urging doctors and parents to educate themselves on the symptoms of encephalitis.

Louise and Richard Taylor’s “wonderful” son Henry died of encephalitis – inflammation of the brain – on November 22 2019, just weeks before his ninth birthday.

However, his symptoms, which included confusion, anxiety and short-term memory loss, were not recognised as being encephalitis-related by healthcare professionals prior to his death.

It was only when Henry “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 was always full of energy (Katrina Campbell Photography/PA Real Life) (PA)

Henry’s condition deteriorated rapidly, to the point where he suffered “irreversible brain damage” – and 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 of encephalitis and hopefully save lives.

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

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

Encephalitis symptoms

According to the NHS

Encephalitis is caused either by an infection invading the brain, such as the herpes-simplex virus or measles, or through the immune system attacking the brain, and in a third of cases, the cause is unknown, Encephalitis International said.

Symptoms can include an altered level of consciousness, personality or behavioural change, fever and a new persistent headache.

Encephalitis usually starts off with flu-like symptoms, such as a high temperature and headache.

More serious symptoms come on over hours, days or weeks, including:

• confusion or disorientation
• seizures or fits
• changes in personality and behaviour
• difficulty speaking
• weakness or loss of movement in some parts of the body
• loss of consciousness

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.”

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”.

Henry was 'fit and active' before being admitted to hospital (Collect/PA Real Life) (PA)

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.”

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.

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

Louise and Henry (Collect/PA Real Life) (PA)

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.

Even at this point, Henry had not been diagnosed and, although his death on November 22 was “peaceful”, the couple were left with many unanswered questions.

Henry died of encephalitis, just weeks before his ninth birthday in 2019 (Katrina Campbell Photography/PA Real Life) (PA)

Henry had gone from playing football on the Saturday to dying six days later – and Richard likened it to being “struck by lightning”.

“There was a feeling of helplessness constantly, and panic and uncertainty, and although it felt peaceful when we said goodbye to Henry, I was in so much shock,” Louise said.

Richard added: “When they told us he was going to die, I just went to a place of complete and utter despair.

“I just remember lying on the floor and screaming and shouting and beating the walls. I was in so much pain that it felt like my body couldn’t hold it.

“When Henry passed away, it was peaceful, but then it was a mixture of shock, numbness and despair, and this surreal edge that you’ll never see your child again.”

According to a new survey commissioned by the charity, eight in 10 (82%) A&E doctors and nurses in the UK are unable to recognise autoimmune encephalitis.

This was the case for Louise and Richard, and they only received confirmation of Henry’s diagnosis after his “devastating” death via a post-mortem report in February 2020.

To this day, they still do not know what caused Henry’s encephalitis – and this is why they feel strongly about raising awareness of the condition.

Louise and Richard said they are still healing, and although life is “bittersweet”, they feel it is important to have “things to look forward to or focus on” while navigating grief.

They go to concerts, spend quality time with their daughter Giselle, 15, and they have even done some fundraising for Encephalitis International, raising more than £6,000.

Now, they wish to share the message to others navigating loss that they are not alone, and they want to thank the charities and organisations who have supported them along the way.

They are also grateful for the amazing staff at the hospitals who “did everything they could to help save Henry”.

Richard said: “One of the only reflections this gives you is that I now look back and realise I had everything; we were so fortunate and blessed to have the life we did.

“Now I realise how fragile life is, and you realise thousands of people go through what we’re going through, and it makes you appreciate the things you didn’t before.”

Encephalitis International is determined to increase awareness among medical professionals through training programmes which will provide the tools for them to better recognise and treat encephalitis, and the charity is urging people to wear red on World Encephalitis Day on February 22 and use #Red4WED and #WorldEncephalitisDay on social media.

For information and how to get involved, visit: encephalitis.info/world-encephalitis-day.