‘They had to remove a quarter of my daughter’s brain’

Just before little Indy Glover celebrated her fifth birthday in the summer of 2023, she had a seizure so severe she appeared to stop breathing and turned blue; her frantic parents were forced to administer CPR for 10 minutes to keep her alive as an ambulance rushed to the scene. “It just came out of nowhere,” explains her mum, Hayley Davies. “Before that, she’d always been fit and healthy.

I’d picked her up from school, it had been a really hot day, and I could tell, beforehand, something wasn’t right with her. What happened just flipped our whole world upside down.” Fortunately, Indy survived that terrifying ordeal - yet it would prove to be just the tip of a traumatic iceberg which would, ultimately, lead to her having seven-hour surgery to remove a quarter of her brain.



Because over the months that followed, the family - who live in Whitstable - would see the number of seizures, although none as severe as she first experienced, escalate. At its peak, she was suffering more than 50 a day - incredibly able to tell her parents, Hayley and Paul, when one was about to strike. Hayley says: “She would say, ‘Mum, one is coming’.

It happened, day and night. And then, as soon as it finished, she'd say ‘it's gone’.” Initially, medical teams at the QEQM Hospital in Margate assumed it was epilepsy and started to treat the symptoms.

“But,” says Hayley, “as a mum, I just knew there was something more. Something in my gut was telling me there's something going on. “They started on medication, trying to determine the right drugs to treat it, when something just clicked in her and she started having seizures every single day.

It started with five a day, then 10, 20, 30, 40 and then 50. “Her longest seizures lasted an hour and a half but none of the drugs they gave her to stop them worked. Then she'd go through what's known as a 'honeymoon period' where she'd be seizure-free for a day or two - then they'd start again.

“They'd change the medication and then it became very clear she was drug resistant. “It was like pouring warm water on boiling water. It would maybe soften and simmer it for a day or two and then it would pick up again.

“She ended up being on five different epileptic medications, three times a day. This huge burden of medication meant she just had zero quality of life. “She was almost comatose on the sofa every day or a hospital bed.

She had no spark - she was just a shell of herself.” For her parents, the pressures were intense. Her mum says: “Because she was having seizures all day and night, there was no opportunity to sleep.

We also had her younger brother, who was two at the time, who wasn't even in nursery. I lost count of the times we had ambulances here. It was just constant.

” Hayley had to stop working for her jewellery design business to focus fully on her daughter. Eventually, after “fighting tooth and nail”, Hayley managed to get her daughter referred to specialists in London. Staff at Evelina London Children's Healthcare took her case on.

Working alongside experts from Great Ormond Street Hospital and King’s College Hospital, her parents kept intricate records of the seizures, while medical gear was attached to Indy to try and gather data as to just what was happening to her. Hayley says: “They did more MRI tests and lots of others, like lumbar punctures, but Indy was incredible and never cried.” Eventually, a scan revealed a slight enlargement on one side of her brain.

The dilemma was the specialists couldn’t be sure of what they faced without a biopsy - which meant brain surgery was the only option and only at the point of surgery would they be sure of what the underlying problem was. They determined the potential best course of action would be the removal of her left temporal lobe - a large chunk of the brain which they believed was causing the seizures. But that came at a potential risk - to her eyesight, mobility, memory and future learning ability.

The consultants also had to weigh up if the benefits outweighed the risks. For Indy’s parents, as they awaited the decisions of the medical experts, they knew the stakes were high. “That,” recalls Hayley, “was probably my most terrifying point because it was very much if she can't have surgery, then there isn't anything they can do.

None of the drugs were working. Each time she had a seizure - especially the long ones - it was damaging her brain. I knew she couldn’t go on like that.

” Finally, in January, six months after that first seizure, the medics agreed she should go on the waiting list for the operation. But they were warned it could take up to a year. All the while, the seizures continued at pace, forcing the little five-year-old to be admitted to hospital almost every week.

“I felt, and at this point she was having 50 seizures a day, it was getting worse,” says her mum. “She was being admitted every seven to eight days. By the last week of February she was in hospital again and they transferred her, as an emergency, up to Great Ormond Street as nothing, at this point, was working.

“We got there on a Friday and a few days later she had surgery.” For seven nerve-wracking hours, her parents waited as surgeons removed almost a quarter of her brain. Not only did they remove the left temporal lobe but also the hippocampus too - part of the brain which helps with memory.

Hayley explains: “When they went in, the surgeon told us there was so much scarring they had to remove more than what they had expected. So they removed everything that was scarred that seemed to be safe. A lot of her brain was removed.

“What they discovered was that she had temporal lobe cirrhosis and that was what was causing the epileptic seizures.“ But there was one final twist. Shortly after she awoke from surgery she suffered two further seizures.

They would, however, be her last. Doctors had expected it as a result of such an operation and, two years later, she’s not had one since. Hayley says: “They don't show you the scan picture until a year has passed - and thank God they don't.

Because when you see it, there's just so much white mass - where they'd resected [cut out] everything. If I'd known that, I'd have been more fearful than I was.” It took a year for Indy to fully recover.

Her balance and short-term memory were impacted in the months which followed - while it took a year to wean her off the powerful drugs she had been on in an effort to treat the seizures before the operation. She missed an entire year’s schooling as a consequence. Today, however, Indy, now seven, has made, remarkably, a full recovery.

Hayley says: “The surgery in itself was a miracle, but it completely worked; it healed her. “She had thousands of seizures before the surgery and it's a miracle that didn't cause any long-lasting brain damage. “The consultant explained when the brain is in so much trauma - as it was in Indy on its left side - it starts to rewire everything that side of the brain does to the right-hand side.

Which may explain why she emerged so well. “Our fear was her personality - whether it would alter who she is. But it hasn't at all.

“After she'd healed, it was like watching her be reborn. She was just fantastic and laughing again. “Two years on, everything is great.

Now she only needs to be checked up every six months. Everyone is really happy with her. “She is just the most wonderful child - beautiful inside and out.

” And on Sunday, her grandfather, Ramsgate businessman Paul Stannard, will be running the London Marathon to raise money for Evelina - the hospital which saved Indy’s life. He will be part of more than 20 runners raising money for the world-renowned children’s hospital. “She's a revelation since the surgery,” the 61-year-old explained.

“You just would not know this child has ever had anything wrong with her. “What they did was a miracle. There's no other word for it.

” You can sponsor Paul by clicking here . “Evelina is partly funded by the NHS and partly by charity. I want to give something back because they undoubtedly saved Indy’s life,” Paul added.

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