Private dental hygienist Emma Taylor was 34-weeks weeks pregnant when she was rushed into hospital suffering from a catastrophic brain bleed. It was later revealed this had been caused by a brain tumour growing at the base of her skull. The 33-year-old, of Chelmsford, Essex, was put in an induced coma before giving birth to her baby by emergency caesarean. She remained unconscious for weeks and is still unable to talk but communicates using head and hand movements, as well as via a computerised device. To progress her recovery, her partner has set up a GoFundMe page to help fund a bespoke rehabilitation programme.
Here is Emma’s story, as told by her partner Scott …
Emma and I were serious about each other from the inception of our relationship and, in around January last year, she moved in with me in Chelmsford. As things progressed, the conversation of children came up and in mid-April she told me she was pregnant. It was amazing news, I couldn’t have been happier.
We started making all the usual plans to buy a more sensible car, get a buggy and buy furniture. We decorated the nursery to Emma’s exact specifications, such as the Mamas & Papas elephant shelves we bought that she didn’t want in white, so we painted pink – as soon as she knew we were having a daughter, she wanted her to be a ‘girlie girl’.
“Emma had a model pregnancy and didn’t experience morning sickness or any of the usual things ladies suffer from.”
As a private dental hygienist, she worked five and a half days a week, in Chelmsford, Witham and occasionally Stowmarket, and, in fact, she was working the day before everything happened.
The day it did, 30 October, was just like any other day. I woke up at the crack of dawn after Emma had been for something like her 15th toilet break. We went back to sleep and, when we woke up, she said she had a headache, but we didn’t think much of it. Breakfasts are my thing, as I’ve always been an early riser, so I went downstairs to prepare it. I made her porridge, which is what she always had, and came back up with a cup of tea.
She’d found a bouncing mumaroo she wanted to buy and had a few things she wanted to take down the local tip after having sold her flat in Colchester the week before, but said she didn’t want to drive because her head hurt too much. I joked that maybe she had a headache because she hadn’t had her caffeine-fix, and so we stopped at Costa on our way out. I looked at her whilst we were in the queue and noticed her eyes were rolling.
“I sat her down and she admitted her head was killing her, but she was adamant she wanted to do what we had planned that day.”
When we got home a few hours later, Emma called a day clinic for pregnant women, which advised her to take Anadin for the pain, and then went to bed. I heard her periodically getting up and being sick, but I suffer from migraines so didn’t think too much of it. About an hour later, I heard her get up and crash to the floor. That sent alarm bells ringing, so I ran upstairs to find her sprawled out on the carpet with sick around her. I told her not to worry about the mess and called for an ambulance.
“After answering questions about whether Emma was bleeding, fitting or having a stroke, I was told we could be waiting as long as four hours for an ambulance.”
She was slurring her words but said she was comfortable on the floor with the duvet I’d given her. I thought maybe she was just really dehydrated, but then I noticed her left eye was completely closed and her right one half-closed. It’s difficult to have independent control of your eyelids, so I made the decision then to take her to hospital myself.
“I tried getting her dressed, but when I asked her to put her left leg into her tracksuit bottoms, Emma told me she couldn’t move it.”
I enlisted a neighbour’s help to get her dressed and downstairs, and set off for Broomfield Hospital, Chelmsford, with her and our pregnancy pack in the car.
The nurse she saw quickly assessed that everything wasn’t as it should be, but Emma was still compos mentis in that she knew who she was, where she was and how many weeks pregnant she was.
“She was moved into a private room and then it was like a tornado of movement with nurses and doctors everywhere.”
Emma was 34-weeks pregnant and I was asked if it was OK to do a scan, even if it might be slightly detrimental to our little one’s growth. I gave permission because Emma needed looking after as well.
“When the doctors came into the waiting room, they told me they were going to deliver our baby, and my insides slipped to the floor as I knew then how serious things were.”
Emma was put into an induced coma to oxygenate the brain before our daughter, Ophelia, was delivered by emergency caesarean. Ophelia weighed 4lbs 12oz. She was fit and healthy but needed a little oxygen and some steroids to help with the development of her lungs. She was put in an incubator, but within a week, had been weaned off the sub-tropical climate she was in.
“The doctors told me Emma had suffered a catastrophic brain bleed, but they didn’t know what had caused it.”
Broomfield isn’t a neurological base, so they contacted Addenbrooke’s Hospital in Cambridge, Guy's Hospital in London and Queen’s Hospital in Romford. Queen’s was the only one with a bed available, so Emma was whisked off there, with her family and I following. We were told the next 24 hours were critical because the swelling and bleeding in Emma’s brain was such she wasn’t sufficiently stable for them to be able to do much.
They packed us off at 3am to get some rest. I stayed round Emma’s dad’s, so was there when I learned that she had stabilised. They had given her some steroids to reduce the swelling and put in a drain to relieve the pressure, and, all being well, would operate on her the following day. Emma had a brain tumour, and we later learned it was a non-cancerous growth she’d likely had since birth, which experienced accelerated growth because of her pregnancy hormones.
“The worry was it had wrapped itself around her spinal column at the base of her skull, in a very delicate position with regards to the parts that surround it and their fragility.”
Emma’s surgery was a success but the nature of her tumour, and the fact there were veins and vessels running through it, meant they could only remove about two thirds. Although she was expected to make a sound recovery, her right eye was expected to remain affected, because the pressure from her bleed had damaged the nerves controlling its movement and vision. Her greatest hurdle however was always going to be regaining consciousness.
“Days went by, weeks even and still nothing happened.”
It just wasn’t what we had expected. We had thought we’d see some sort of awakening, but that didn’t happen. Emma was then given a tracheotomy because of concerns over the tubes in her throat. We were told if her brain stem had been damaged, there was the possibility she might never regain consciousness. I was struggling to come to terms with the fact Emma might be in a hospital or care home for the rest of her life.
“After about a month of being on the ventilator and looking very sorry for herself, we made the decision to switch it off.”
This was on the grounds if Emma was meant to be here, she’d make it through, and, if not, she’d slip peacefully away. Thankfully, she started breathing on her own, at which point she no longer needed to be in the ICU and was transferred back to Broomfield, the Billericay ward which is non neuro-focused but would allow her an area in which to recover.
“On 25 January, I popped in to see Emma and found her with a speech and language specialist who said she’d been having conversations with her.”
It felt like someone had pulled the rug out from under me. The specialist said she’d been asking Emma questions and Emma been answering with her eyes. By mid-morning, it was obvious she was conscious because the spasming she’d been exhibiting, the hard crank to the right in her neck, the clawing with her left hand and extensions of both her feet on tip toes, had all gone away.
This is the point at which Emma qualified for rehabilitation. We were geared up for her to go to Putney, but she ended up going to Northwick Park Hospital where they started working with her from a physio perspective. For one month, she had eye movement only, but in March she started moving her right side, her fingers, then her forearm, and then her head up and down. Next she got slight movement in her left hand, just in her thumb and fingers, and then she was given a computerised device which allowed her to express herself with words.
“The problem was that she was only set up for a three-month course of rehab.”
Emma’s now been moved to a level two rehab facility, the Marillac Neurological Care Centre in Brentwood. She’s currently waiting to be assessed, so isn’t getting any rehab, but the intensity of it wouldn’t be what she’s used to anyway. Emma doesn’t want to sit around focusing on what’s happened, she wants to focus on what’s next. She wants to come home, which is why I decided to set up a GoFundMe page. I’m looking to optimise the time Emma has with a bespoke rehabilitation programme.
“I want her to be the weak link in the process, not the treatment falling short of what she can handle.”
At the moment, Emma’s frustrated because she feels she’s not doing enough to expedite the process and get home to our little girl, and, as her partner, that’s really sad because I can’t do much to help her. Even on a half-decent city wage, a bespoke programme, costing £8-10,000 a week, is unaffordable.
“I want to help Emma, I don’t want finance to be an impediment to her making progress and am doing everything I can to prevent that from happening.”
I’ve been told the rehab process can take up to two years, so it’s incredibly frustrating the NHS offer is just three months. It came to an end too quickly, and so it’s something I’m looking to continue for her. I’m really grateful to everyone who’s allowed us to get to where we are today, but I want her to be able to return to as normal as can be as soon as possible.
“Ophelia will be seven months old on 30 May and I don’t want Emma to miss any more time with her.”
It’s been a bittersweet process of moving between the joy of being a dad to Ophelia and seeing her mum unconscious, unaware of anything, but we’ve definitely turned a corner now. She was stroking Ophelia’s hand as she fell asleep last weekend and, when I asked Emma if she was happy, she nodded for several seconds. In the absence of her being able to speak, due to the tracheotomy she had, which they’re now looking to remove, it’s a miracle she’s able to communicate at all. What she’s shown us is that she’s all there, she remembers everything, and she’s halfway back to us but needs help to continue progressing. I’m trying to enable her to live her life, rather than be stuck in a box.
“What price would you put on freeing someone who is a prisoner in their own body?”
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research has been allocated to this devastating disease.
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