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Patient story

‘We both have special brains’

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When Marie was diagnosed with a brain tumour shortly after the birth of her daughter Amelia, which left her facing three life-saving rounds of surgery, the family’s trauma continued when Amelia was also found to have a neurological condition. Here, Marie shares how positivity and practicality are the key to them getting through whatever lies ahead

“My daughter and I are the same – we both have special brains. 

I was living with my brain tumour when I was expecting Amelia, and probably had been for a long time – not that I knew about it. I’d had headaches for years, but it was only six weeks after she was born, when they became absolutely unbearable, that I found out what had been happening in my brain while I’d been getting on with my life. 

Three life-saving brain surgeries later and I’m still here, though I have hydrocephalus and need a VP shunt, which reduces pressure on my brain – but I could need further surgery at any point. 

Amelia, my only child, spent much of her first year in and out of hospital with me, with my husband Darren bringing her to see me every day I was in The Walton Centre. I did feel she was missing out on being a baby, going to the classes babies go to and doing all the things mums do with their children, but we made the most of every minute of our time together. 

I did notice her lack of development and the fact she just wasn’t doing what other babies her age were doing, but I was told babies all develop at their own rate, in their own time, and not to worry about that. 

Through being in hospital so much, it made me feel so guilty for being away from her, and thought maybe that could be why she was behind where other babies were developmentally? 

She had certainly not had the start to her life we imagined. There was one point where I was particularly ill, and no-one was sure I was going to make it. I whispered to Amelia to ‘look after your daddy’ if I didn’t pull through. 

For all the staff at The Walton Centre are amazing, and the care is fantastic, being on a neuro ward is very difficult. Fear, dread, huge amounts of pain and no idea what fate awaits you are the overriding emotions. A lady in the bed opposite me, who looked so glamorous and – physically, at least – appeared less ill than I did, passed away. How are you to know whether you’re going to be next? It was a very scary time. 

After such an awful experience, the very last thing I’d ever want for Amelia – for her to have a neurological condition too – began to increasingly look like reality. 

For all people were telling me that children develop at different rates, I was part of a global Facebook group of mums whose children were all born in the same month of the same year. There were kids in there saying the whole alphabet – Amelia wasn’t even saying ‘da’. 

Clearly something was wrong, and while it took a while to get anyone to listen. I asked our health visitor to come and do an ages and stages assessment and there were red flags all over the place. We were referred into children’s disability services and Amelia had so many tests – thankfully her MRI scans came back clear, which confirmed there was nothing seriously wrong medically, which was a huge relief. 

But there was something wrong – although to this day, as she approaches her sixth birthday, we still don’t know exactly what. Amelia is non-verbal and has global development delay, which is an umbrella term across a host of developmental neurological issues, although we haven’t got a more specific diagnosis than that. Our neurologist said we may never get a ‘label’ for her condition, but we don’t need it. 

Two neurological conditions in one family of three – who would ever have thought that could happen? You couldn’t make it up! We’re going to have some genetic mapping done at Liverpool Women’s Hospital in the coming months, to see if there is more to it than just bad luck, but for now we don’t know. 

Day to day, Amelia now has a host of therapies and support in place, including speech and language therapy, physiotherapy and occupational therapy, and we used to have some brilliant portage workers who came out to support her, although at that time her development was so delayed, she didn’t benefit from it. However, now I feel she’s at a stage where she would, and is finally interested in a shape sorting toy, so I’m training to be a portage worker myself, so give Amelia more of the support she needs at home. 

She was diagnosed as having epilepsy just before lockdown and while her medication seemed to be working well, at the start of this year she began to have regular seizures. As she’s only five, she’s growing quickly and her medication is based on her weight, so hopefully we can get that right – but the medical support is amazing, we have a WhatsApp group where I can send a video to our nurse, who will then show it to a consultant, and they’ll come straight back to us. It’s helped us to cope so much better. 

But we’ll get on with life, and the last thing I ever want is for anyone to pity us. When I was in hospital after my second operation, I did look terrible, having lost some of my hair, and I felt absolutely dreadful. I heard one of the visitors saying to the person opposite, ‘Look at that poor girl over there’. That really changed my whole attitude at that point, as there’s nothing ‘poor’ about me, so my answer was to shave my head. I raised £1,300 for The Walton Centre by doing so. 

We would never ask ‘Why me? Why us?’ Because why not us? This could happen to absolutely anyone. Acceptance has been hard to achieve, but you learn that while you may not be able to control the future, you can certainly make the most of today. I’m always thinking ‘What does Amelia need her today? What can I do for her today that will make her life better?’ I don’t spend my time worrying about later in life, or that we don’t have a diagnosis for her – we just take it a day at a time. 

I’m now preparing to take part in the virtual London Marathon, where I’ll cover the whole 26 mile distance in 24 hours. It was something I first discovered when I was awake at 4am one day, and decided to go on Facebook. It sounded really interesting and is the next stage in my quest to push myself, while being mindful that I still have the shunt. 

I took up running at an early stage in my recovery, and exercise gave me milestones to aim for. I started with walking 15,000 steps in a day, which was a huge challenge at first, and built from there. I’ve since built up to doing quite a few virtual races outside and I also climbed Ben Nevis in 2018 – and importantly, I even made it to the top before my husband! 

I do what I can and won’t be dominated by the effects of what happened to me. I still struggle with my memory and have Alexa devices and whiteboards all over the house to help me remember, and my husband counts the tins of dog food to make sure I haven’t forgotten to feed our dog. It’s really important that I keep hydrated, so I have a 3.6 litre bottle I know I have to drink by the end of the day. We’ve developed various tactics around practical tasks to get by, and we do. 

As for Amelia, she absolutely loves her school, and we’re out every morning walking up and down the road, waiting for her bus to come. Sometimes she doesn’t want to get off when she gets home as she’s had such a great time! She’s happy and loved, and whatever lies ahead for her, we’ll get through it together, as we always have and always will.” 

Patient story

‘I didn’t know this could happen to a child’

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When Lily had a stroke aged only eight, such a diagnosis never crossed her family’s minds. Here, her mum Natalie shares their story of rebuilding their lives and why they are committed to raising awareness of childhood stroke

 

Almost a year ago, in April last year, eight-year-old Lily was rushed to Queens Hospital in Romford after collapsing at home. 

“It was a Monday afternoon during the first national lockdown, and we were preparing to do some schoolwork,” recalls her mum, Natalie. 

“Lily had been playing with her older brother all morning, laughing, and having fun. 

“We could never have imagined what was about to happen. There were no warning signs.

“She came to me and said her hand felt weird. I told her it was probably pins and needles and if she just wiggled her fingers around it would go away. 

“Lily was sure it wasn’t pins and needles and kept saying she ‘felt weird and didn’t like it’. I laid her down in my bed to see if that would help her feel any better.

“We laid for a couple of minutes before Lily said she needed the toilet. As she went to get up, she collapsed down the right side of her body. 

“I had no idea what was happening. I picked her up and sat her on the toilet, and she couldn’t even hold herself up.”

Natalie immediately called 999 and was advised that an ambulance was 40 minutes away. After just five minutes, Lily appeared very confused and could no longer talk.

“I called 999 again and told them we couldn’t wait, we needed them to come quickly,” she says. 

“This had all happened within half an hour. Lily had gone from giggling with her brother to being completely paralysed down the right side of her body. 

“When she arrived at the hospital, Lily had lots of different tests and scans.

“We were then blue lighted to Great Ormond Street Hospital (GOSH) in London. There they confirmed that Lily had suffered a stroke. 

“All the typical stroke symptoms that they tell you to look out for had happened to Lily – Face, Arm, Speech – but it just never occurred to me that this could happen to a child. 

“I had always assumed that it just happened to older people. I was wrong.”

Lily spent four weeks at GOSH and the hugely difficult time for the family was made worse by the COVID-19 lockdown rules in place at the time. 

The restrictions meant that only one parent was able to be with Lily in hospital, and they couldn’t switch.

“As Bill, Lily’s dad, had gone in the ambulance with her, he was the only parent allowed to stay,” says Natalie. 

“I couldn’t see her at all. We are a very close family, and this meant we were totally split. Even on Lily’s birthday. 

“The nurses made it as special as they could for her, but I just desperately wanted to be there. It was the toughest time of our lives.”

At the end of May, Lily moved from GOSH to The Children’s Trust in Tadworth, Surrey. 

“I think we were all excited. When her team at the hospital first mentioned it, it sounded amazing, exactly what Lily needed. It also meant that as soon as she got there, I would be allowed to see her as two parents could visit on site,” continues Natalie.

“I was so thankful to be a part of her rehabilitation. Bill had been amazing, but I wanted my turn, and he needed a break – although he wouldn’t admit it. 

“He hadn’t been home for a month, seen our son Alfie, or even sat on a sofa. All the things you normally take for granted.

“Unfortunately, due to ongoing COVID-19 restrictions, Alfie wasn’t able to visit, so it was still really challenging for us and the family still felt somewhat separated. 

“I think Lily felt a bit apprehensive about it all. Meeting lots of new people, including a new rehabilitation team, and moving into a new room was all a bit scary for her. But all the staff were amazing, and they really helped settle Lily and make her feel welcome.”

Lily’s busy rehabilitation schedule meant she had sessions from 9.30am until 4pm every day. These included occupational therapy, physiotherapy, speech and language therapy, school lessons and play therapy.

“Lily was an absolute delight to work with,” says Mairi, specialist occupational therapist at The Children’s Trust.

“One of her goals was to improve the strength in her right arm for activities such as dressing herself and being able to do arts and crafts. 

“It was a joy to work towards this with Lily as she always encouraged us to find lots of ways to make therapy more fun. 

“This included learning lots of TikTok dances that included the use of Lily’s right arm, making bracelets and making slime whilst using both hands. 

“By the end of her placement Lily’s right arm was much stronger and we could barely keep up with her in her TikTok dances!”

On July 2, Lily was able to ring the ‘going home bell’ to celebrate all that she had achieved during her time at The Children’s Trust. 

“It was such a special day for us, and we are so proud of her,” remembers Natalie. 

“Since being home, Lily still has to attend appointments at GOSH, to have further scans and angiograms, and these sometimes involve overnight stays, but she is doing so well. She’s also continuing the TikTok dances, she just loves it!

“Family life is starting to feel normal again. In September 2020, Lily went back to school, doing just two hours a day.

“Just before Christmas, she had progressed to staying until 12.30pm every day and was managing this really well.

“I still feel anxious about everything that has happened and I think it will take time for us as a family to fully ‘recover’ from what happened to Lily. 

“Going forward I would like to help raise awareness of childhood strokes, as it’s something I had not heard of, and bring families together who had been through similar experiences.”

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Rebuilding our lives after brain injury

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Brittney's rehabilitation included speech and language therapy, occupational therapy, and physiotherapy.

Brittney was 11 years old when she was hit by a car while walking to school, leaving her with a serious brain injury. Here, her mum Pat shares how the family continue to rebuild their lives

“The accident happened on the morning of April 1, 2019. I got a phone call from a woman, who told me that my daughter’s friend had been knocked over, but I then heard my older daughter in the background saying, “It’s not my friend, it’s my sister.”

I got dressed quickly but couldn’t find any shoes. I remembered I had left some outside in the car so I went to look for them. Once I had some shoes on, I don’t know if it was mother’s instinct, but something told me to run.

When I got to the top of the road I could see Brittney lying in the middle of the road. Instantly I could see that she wasn’t OK.

The medical team on the scene said that she would have to be airlifted to hospital, and it wasn’t long before Brittney was rushed to the London Royal Hospital via helicopter. Initial CT scans showed that she had suffered a traumatic subarachnoid haemorrhage, bleeding into the space that surrounds the brain.

I stayed by her side in the hospital and after three days on a ventilator, Brittney finally woke up. She was unable to stand, sit, walk, talk, eat or feed herself, and it was going to be a long road for her to relearn all these skills.

Being in hospital was stressful at times because we could not be together as a family. Brittney was only able to see her siblings for a short time each week as school continued for them, so trying to keep her entertained was sometimes difficult.

However, watching the daily progress made it all worthwhile. Brittney’s favourite sessions were physiotherapy as she was determined to recover as much she could. Every day felt like winning the lottery as she’d do something new, no matter how small and trivial it seemed.

Some days also felt like Groundhog Day, so we couldn’t wait to go back to normality. There was also a lot of anxiety as to how we were going to settle back home, as Brittney now had needs that home could not accommodate, so we were over the moon when we heard about The Children’s Trust and all the things they were offering Brittney as she still had a long way to go.

Slowly, Brittney started to improve and after spending two months in hospital, she was stable enough to be transferred to The Children’s Trust for four months of intensive rehabilitation.

When we first arrived at Tadworth in Surrey we felt a mixture of anxiety and excitement. We were afraid of how we were going to cope in a new environment that was far from home, but offered more freedom that hospital.

Brittney was excited about having her own room but also nervous as she had become accustomed to both of us sharing at the hospital. This place was so big, full of greenery, which was so different from the busy city environment back at the hospital. I had my own space now about five or six minutes away. It felt like Brittney was now going to get some routine back in her life. She had a timetable catered specifically for her needs and what was best for her recovery.

The timetable included speech and language therapy, occupational therapy, and physiotherapy. Brittney had physiotherapy every day and it quickly became one of her favourite sessions. It really helped her learn to walk again and towards the end of our stay in Tadworth she was even able to try playing netball again – something she loved doing before her accident.

The psychology sessions with Katie were also brilliant for Brittney’s wellbeing, and it was something that she looked forward to each week. They provided a time for her to address the accident and learn to accept the new her, both things that she had been struggling with. Katie helped her understand a lot of her behaviours and put everything into perspective.

Brittney has come such a long way and is now able to walk and talk. She is continuing to make progress at home and has even gone back to school.

The pandemic hasn’t been easy for us, but we learnt a lot of survival skills being at The Children’s Trust. Being there helped us come back together as a family after something so big had happened. It was almost practice for what was to come.

We learnt to talk about our problems together, spend time together, whilst valuing every moment with each other. We continue to look forward to what the future will look like especially once lockdown is over.

Brittney has had lots of opportunities to pursue her love of fashion and art since Tadworth. Taking part in zoom calls, entering small make-up sessions and continuing her physiotherapy, as she hopes to one day be able to do physical activities as well as she did before her accident.

She continues with her online schooling but looks forward to returning to school and seeing all her school friends. Brittney continues to remain hopeful for the future and hopefully be able to do enough to sit her GCSEs.

I could not have done it without The Children’s Trust. They really are lifesavers.”

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‘Confront your fears and do what you love – or you never will’

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Louise Hulbert - stroke survivor and author of From Burgos to Bedroom Floor and Back Again

Only days after returning from an adventure of a lifetime, Louise Hulbert’s world was torn apart when she had a stroke. Here, the author of From Burgos to Bedroom Floor and Back Again tells NR Times how she hopes to inspire other survivors with her story

Three years into retirement, and about to celebrate a landmark birthday, Louise Hulbert was making the most of her 60th year.

A lover of walking, she had just completed several stages of El Camino, a long-distance pilgrimage walk from France to Santiago de Compostela in northern Spain, crossing the Pyrenees on the way, covering up to 15 miles every day.

“We walked from St-Jean-Pied-de-Port to Burgos over three weeks, it was a great adventure, the latest of many, with many more set to come,” recalls Louise.

But shortly after returning to her Essex home, the adventure turned into a nightmare when Louise, a former PE teacher and lover of activity, woke up one morning on her bedroom floor, with no memory of how she had got there.

She had no feeling in her left arm or leg, and couldn’t get up from where she found herself. She lay there for several hours until she was found and rushed to hospital.

“It was absolutely terrifying. It was so unexpected and there was no symptoms of this beforehand, no warning. It never entered my head that someone as fit and healthy as me, who had been walking 15 miles a day only a few days earlier, could be having a stroke,” says Louise.

But that was the reality. Unbeknown to Louise, she had a blood clot which blocked the middle cerebral artery and cut off the oxygen supply to the right side of her brain.

A four month stay in hospital followed, which, says Louise, “felt like a lifetime”.

“I’ve always been so active and I just wanted to be up and about, back home and living my life. But that wasn’t something I could just go back to, sadly,” she says.

After being discharged, initially in a wheelchair, Louise had daily physio and occupational therapy for ten weeks, which enabled her to walk again with the aid of a stick.

“I think probably the worst bit of it all was that initial phase when I came home and I couldn’t get up and walk, I couldn’t get around my own house, I couldn’t even go to the loo on my own,” says Louise.

“To lose your sense of autonomy is absolutely dreadful.”

And while Louise pushed herself to be able to walk again, the psychological benefits were much more difficult to overcome.

“Looking back now, I realise how much I struggled,” she recalls.

“I totally lost all of my confidence and self esteem. I felt like a useless lump and a complete burden, a shadow of the woman I had been prior to the stroke.

“I lost the ability to make any decision for myself about anything. It could be that someone would phone and ask if I wanted to go out shopping, and I would defer to my partner for a decision.”

Walking was something Louise was determined to return to, and having been up and about with the aid of a stick within her first 10 weeks of being at home, she continued to challenge herself.

“I wanted to get back into walking outdoors, for me that would be a huge achievement and a big step forward as I love it so much,” she says.

“I live next to a country park and challenged myself to go a bit further every day. Over time I built up to being able to walk for half an hour, and by the end of the first lockdown I was walking for two hours each day.”

Setting goals was crucial for Louise in her recovery, enabling her to increase the targets as she progressed.

“I’ve inherited a very strong work ethic from my family and I don’t give up easily, I’m continuing to push what I can do. I’ve also had constant support and encouragement from my partner, which has been hugely important,” she says.

“I think you have to confront your fears and find a way of doing the things you love – or else you won’t.

“About five years after my stroke, I completed a 5k charity walk in Spain, which was the furthest I had walked since before it happened. I trained hard for it, like you would in any sport, and that was a big milestone for me.

“I now want to go back to El Camino and do another section of it by the time I’m 70, which is another challenge I have set for myself.

“I’m also driving on my own again. For a long time I wouldn’t have had the confidence to do that, but I took a dog soft toy with me which I found a great comfort. It helped me to regain some of my independence, which has been another big step.”

Now six years on from her stroke, Louise’s confidence is a “work in progress” but is building all the time through her volunteering work on the stroke rehab ward at King George Hospital in Essex, as well as with Stroke Rehab Dogs.

“It has helped me enormously. Working with fellow stroke survivors has been really important, and I also feel like I’m making a contribution, giving something back,” she says.

And from her huge strides forward in her physical and psychological recovery, the idea for Louise’s book was born. By sharing insights online with her Stroke Rehab Dogs group during lockdown, the charity’s director suggested she should make them into a book.

“I’ve never had any literary ambitions, so had never thought about writing a book at all, but it did seem to make sense the more I thought about it,” she says.

From Burgos to Bedroom Floor and Back Again is now available from major high street and online retailers, and is raising vital funds for three causes close to Louise’s heart – Canine Partners, Stroke Rehab Dogs and ARNI.

“It has been a very cathartic experience,” she says.

“Some days I’d finish writing on a real high, whereas others I would feel quite depressed. But it really helped me to process and understand what had happened, particularly psychologically.

“But the main motivation has always been that I want to help other people who find themselves in the situation I did. I want to help them find the inspiration to keep going, no matter how hard it seems.

“There are bad times, but it need not always be that way. By setting goals for your ambitions, and finding the strength to help yourself achieve them, you can reclaim your life.”

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