Doctors blamed Ellie’s dizzy spells on a vitamin D deficiency – she died aged just 19
CATHERINE O’Connor’s daughter used to write her Christmas wish list months in advance.
Ellie Watts would beg for the latest trainers or a new perfume, and it used to drive her mum crazy.
“Every year she’d give me a list of presents that she’d like in the autumn,” Catherine, 47, says.
“I’d always say jokingly: ‘You can’t possibly have all of this’ – then I’d do my very best to buy it all for her.”
But in 2023, mum-of-two Catherine found herself with one less daughter to buy gifts for.
Ellie, who had been suffering from dizzy spells, died in October aged 19.
She had a brain tumour and developed hydrocephalus – a build up of fluid on the brain – and suffered a cardiac arrest.
“Because she put together her list so early, when she died she had already thought about everything she’d like,” Catherine, from Dartford, Kent, says.
“On the list was a Prada perfume, some trainers, and some Sol de Janeiro Brazilian Bum Bum Cream.
“But instead of opening these presents, she passed away and we faced our first Christmas without her.”
Ellie was Christmas-obsessed, so her family did everything they could to make it as magical as possible, despite the gaping hole in their lives.
“She absolutely loved it,” Catherine says.
“She always had an extra Christmas tree in her bedroom, decorated with pretty baubles, and she adored listening to Christmas music and watching Christmas films.
“In 2022, she and her sister Lucy bought matching Christmas jumpers and posed for pictures around the tree. They looked so beautiful.
“Ellie loved our old favourite family Christmas traditions so much that last year we thought we’d stick to them all, even though it was hard to get through them when she was missing from the table.
“While I was decorating the Christmas tree, in my mind’s eye I could see Ellie watching me from her favourite place on the couch, and it made me feel sad and empty, even as I was being reminded of so many happy memories from years past.
“For years now, my girls and I have made sausage rolls to eat on Christmas Eve.
“Lucy still wanted to make them last year and we enjoyed doing that, although of course it wasn’t the same without Ellie.”
To add to the heartache, December 25 is also Catherine’s birthday.
“It just makes being without her even harder,” she adds.
The first time Ellie started showing any symptoms, she was 17 and we were at a fitting for her blush pink bridesmaid’s dress
Catherine O'Connor
But for 2024, the family wants to focus on starting some new traditions.
“This year Lucy and Chris’ daughter Ruby are planning to wear matching Christmas jumpers,” Catherine says.
“I know we will miss Ellie all over again but we will also count ourselves lucky to still have the rest of our lovely family in our lives.”
Ellie showed the first signs of a brain tumour that was to claim her life at a dress fitting to be her mum’s bridesmaid.
In August 2021, the schoolgirl was getting ready to accompany her mother down the aisle when she started feeling dizzy and sweaty.
She passed away just two years later from hydrocephalus caused by the tumour.
Now Catherine is working with the charity Brain Tumour Research to raise funds and boost awareness.
‘I noticed a bead of sweat on her upper lip’
“Ellie was a wonderful person – full of fun, always smiling,” she says.
“She was a beautiful girl, inside and out, and she was always very kind and loved helping people.
“She was bright but could also be scatty, and often made us laugh with the daft things she did.”
In the same year she became ill, Ellie was briefly featured on the Channel 4 TV show Teen First Dates.
She didn’t find love and never went out with her date again, but they remained friends.
By the time Ellie died, she was in her second year of university and aiming to be a police officer.
She’d also applied to volunteer with the probation service.
Catherine says: “The first time Ellie started showing any symptoms of being poorly, she was 17.
“We were at a fitting for her blush pink bridesmaid’s dress before my wedding to my then-fiancé, Chris.
“She started feeling lightheaded and I noticed a bead of sweat on her upper lip.
“She was a bit unsteady on her feet, and almost swaying, but I thought it was just because she’d been standing up for too long.”
Catherine married Chris, 58, in September 2021.
The pair met him on her very own front doorstep, through Ellie, who was friends with Chris’ teenage daughter at school.
But by October that year, Ellie was still experiencing symptoms, and her mum took her to a doctor to get checked out.
The most common symptoms of a brain tumour
More than 12,000 Brits are diagnosed with a primary brain tumour every year — of which around half are cancerous — with 5,300 losing their lives.
The disease is the most deadly cancer in children and adults aged under 40, according to the Brain Tumour Charity.
Brain tumours reduce life expectancies by an average of 27 years, with just 12 per cent of adults surviving five years after diagnosis.
There are two main types, with non-cancerous benign tumours growing more slowly and being less likely to return after treatment.
Cancerous malignant brain tumours can either start in the brain or spread there from elsewhere in the body and are more likely to return.
Brain tumours can cause headaches, seizures, nausea, vomiting and memory problems, according to the NHS.
They can also lead to changes in personality weakness or paralysis on one side of the problem and problems with speech or vision.
The nine most common symptoms are:
- Headaches
- Seizures
- Feeling sick
- Being sick
- Memory problems
- Change in personality
- Weakness or paralysis on one side of the body
- Vision problems
- Speech problems
If you are suffering any of these symptoms, particularly a headache that feels different from the ones you normally get, you should visit your GP.
Source: NHS
She had some blood tests, which came back normal, but in January 2022 they made another appointment to discuss what to do next.
“We were told she was probably deficient in vitamin D,” Catherine says.
Ellie was advised to take antihistamines to help with her dizziness, and to drink more water, which seemed to work for a while.
However, in April 2022, the schoolgirl, by then studying for A levels, began experiencing bouts of nausea and vomiting.
By the time she turned 18 in May, Ellie was nearing her exams and had a part-time job at John Lewis, Bluewater, but had to take a few days off because she was still feeling unwell.
“Ellie told me she’d had a couple of headaches, although I suspect she’d probably had more,” says Catherine.
“I also saw she sometimes had that same little bead of sweat on her top lip again.”
The teenager managed to get an appointment with her GP practice nurse – who did lots of tests and sent Ellie for an MRI scan, which eventually took place in August 2022.
The results revealed an abnormality, although at first nobody was certain what it was.
But soon afterwards she was diagnosed with a grade 1 astrocytoma at the back of her brain and found to be suffering from hydrocephalus, a build-up of fluid caused by the tumour.
Catherine says: “When we were given the diagnosis, I burst into tears.
“But my darling Ellie stayed very calm – she was much more concerned about comforting me than worrying about herself.
“That was so typical of her.”
Within an hour of getting the bad news, Ellie was on her way to Kings College Hospital in London.
ROLLERCOASTER JOURNEY
There, she was given steroids to reduce the fluid, and then three days later came an operation to remove as much of the tumour as possible.
However, because it was pressing against her brain stem, doctors were unable to remove all of it, and had to leave a small area of low-grade tumour behind.
Six days after surgery, Ellie was home again.
Soon afterwards, she opened her A level results and was delighted to find she’d achieved the grades necessary for her chosen course in criminology and criminal justice at Greenwich University.
With her health now seemingly stable, but living at home for extra support, Ellie started uni in October 2022.
For the next year she remained well, studying hard and achieving 85 per cent in her end-of-year exams.
“We were all so proud of her,” recalls Catherine.
But during her second year, Ellie started complaining about headaches again.
Catherine was immediately concerned, insisting that her daughter went to A&E the following day.
But by then she was walking unsteadily, and her mum noticed that little bead of sweat on her upper lip once more.
A scan revealed the bad news that Ellie’s hydrocephalus had returned.
She was rushed straight to Kings College Hospital for more surgery to put a shunt into her brain, but she suffered a cardiac arrest during the operation.
She never woke up again.
Catherine says: “Two days after surgery, we were told there was no realistic prospect of any recovery.
“We had to take the heartbreaking decision to turn off our daughter’s life support machine.”
When she asked if Ellie’s organs might be suitable for transplant, Catherine was amazed to discover that her daughter was already registered as a donor, updating her registration just 10 days before she passed away on October 8, 2023.
Ellie was always a positive person, and I know I need to try and carry that forward, as best I can
Catherine O'Connor
“It seems such a coincidence, I wonder whether she had a premonition she wasn’t long for this world,” says Catherine.
“Her death is a massive loss but she will live on, not just in those people to whom she donated organs, but in all those of us who knew and loved her.”
Both kidneys, her liver, and parts of Ellie’s heart went to five people.
Since her daughter’s death, Catherine, a watch manager at the London Ambulance Service’s emergency operations centre, has been working with Brain Tumour Research to fundraise and spread awareness of the symptoms, which include headaches, vision changes and dizziness.
More than 12,000 people are diagnosed with a primary brain tumour each year in the UK, including 500 children and young people.
About one third are astrocytomas – a growth of cells that starts in the brain or spinal cord.
In Ellie’s memory, Catherine ran the Norfolk Marathon in April 2024.
She has so far raised almost £3,000 for the charity. You can donate here.
“I’ve never run more than 10km before but I felt that training for a marathon would give me something to focus on, because I missed Ellie so terribly,” the mum adds.
“She was always a positive person, and I know I need to try and carry that forward, as best I can.”