Marie’s brain tumour story: “I said goodbye to my newborn daughter and had to learn to walk again”
Former civil servant Marie learned to walk again after being diagnosed with a golf ball-sized brain tumour weeks after the birth of her daughter.
In 2015, the 45-year-old said goodbye to her husband Darren and newborn daughter Amelia after doctors found a meningioma brain tumour less than six weeks after giving birth.
Marie had suffered from severe headaches for 7 years, which had become unmanageable after Amelia’s birth, and also developed dizziness and loss of balance in the days leading up to her diagnosis.
The mum was rushed to The Walton Centre where she spent more than a month as she underwent 3 brain surgeries, the longest of which lasted 8 hours, before battling meningitis – all while trying to be a new mum from her hospital bed.
Marie also discovered she had a Chiari malformation, where the brain pushes down into the spinal cord, and hydrocephalus, a build-up of fluid on the brain, as a result of the tumour.
After her life-saving operations, Marie, from St Helens, needed several days of physiotherapy to be able to stand on her own, and it was weeks before she could properly walk again.
Marie said: “The night before my first brain surgery, I said goodbye to Amelia and my husband Darren. When Darren went to the toilet, I whispered to Amelia ‘look after your daddy’.
“After the operation I struggled to walk, but I did it.
“At first, it took 2 physios to get me from my bed to the nurses’ station and when I first left hospital, I could only do 300 steps per day – even just going to the shops was exhausting.
“But I kept pushing my boundaries. I appreciate my legs and the ability to use them every single day, because some people with neurological conditions are not as lucky.”
Marie’s daughter Amelia, now 6, was diagnosed with severe learning disabilities before her first birthday; she has global development delay, epilepsy and is non-verbal.
Marie and Darren do not know whether Marie having a brain tumour during her pregnancy may have caused these conditions, as so far genetic testing has not given them answers.
Marie still has hydrocephalus and needs a VP shunt, a medical device that relieves pressure on the brain by reducing the accumulated fluid, meaning she could need more emergency brain surgery at any point.
The former counsellor, who is now a full-time carer for Amelia, said: “The way things happened to our family – you literally couldn’t write it.
“Who has triple brain surgery and then it turns out their daughter has a neurological condition too?
“But in a way, we’re grateful as everything we went through with my brain, made us stronger to be able to help Amelia.
“She, too, struggled to walk but did it – she does so many things we never thought she might be able to do, and she brings us so much joy every day.”
Every year, Marie and her family celebrate her ‘tumourversary’. She and husband Darren go away on the anniversary of her diagnosis, and toast to another year of life.
The 45-year-old said The Brain Charity’s counselling sessions were a lifeline in helping her come to terms with not just her own experience but Amelia’s diagnosis too.
Marie was offered the counselling, which is free to anyone with a neurological condition, after speaking to The Brain Charity’s staff who are based at The Walton Centre.
She said: “At one point I was waking up and didn’t want to be awake. I was in a dark place.
“It was so difficult being away from my baby, Amelia was at home just 6 weeks old.
“But my counsellor was absolutely amazing, it was the best thing I could ever have done.
“The Brain Charity gave me an incredible gift – it was life-changing and amazingly supportive.
“I needed a specialist who understood neurological conditions – not many people know what a wide-reaching impact they can have on your life.
“The Brain Charity gave me perspective. It taught me to accept ‘this is life’ and that just being able to do the dishes is a gift.”
Remarkably, Marie ran the virtual London Marathon for The Brain Charity in October – raising more than £1,500.
Marie said: “What better way to celebrate life, beautiful and miraculous brains and legs than by completing the Virtual London Marathon.
“I’ve never run a marathon – everyone thinks I’m crazy but everyone knows I’ll be able to do it.
“My plan is to run as much of it as I can, but I am happy to walk or crawl too.
“I have chosen to support The Brain Charity as they provided me with invaluable counselling for free, which helped me put the pieces of my brain back together.”