Timebomb that left Kat blind and in a wheelchair at just 28: A mother”s moving account of a disorder that affects one in 100
Just over a year ago, Kat Heriot Maitland’s life seemed blessed. Beautiful and intelligent, she was happily married with a gorgeous baby son, Louis, and running a thriving events management business.
Then, on the morning of September 7, her life changed for ever. The 28- year-old suffered a stroke.
‘One minute I was about to get in the shower, the next I was hearing blood rushing in my left ear,’ she says.
Kat Heriot Maitland with husband Jamie and son Louis before her stroke just over a year ago. “I had this ticking timebomb inside me,” she said
‘It came completely and utterly without warning. I now know this was the actual sound of the blood from the burst vessels whooshing through the veins.’
Though there was no pain, Kat knew something ominous was happening and shouted for help. Her husband Jamie, 33, was at work, but a doctor friend was staying in the house.
‘My speech sounded odd and slurry, and I couldn’t feel my left-hand side.
“My eyesight also started to blur before going completely black and I had problems swallowing,’ says Kat.
‘My friend told me to lie down, and then phoned for an ambulance.’
But the damage had been done. A year later, Kat has made significant improvement, but she still needs 24-hour care. She cannot walk and has largely lost her sight.
A year later, Kat (pictured with Louis) has made significant improvement, but she still needs 24-hour care. She cannot walk and has largely lost her sight
The stroke was caused when malformed blood vessels in her brain burst. Unbeknown to her, she’d been born with this problem.
‘I had this ticking timebomb inside me. But with no symptoms over the years — not even a headache — no one had any idea it was there,’ says Kat, who lives in Perthshire.
‘Now, sadly, it’s something I’m reminded of every day.’
Arteriovenous malformations (AVMs), as they are known, affect around one in every 100 Britons. They can occur anywhere in the body — the lungs, bowel or kidneys — though they are commonly in the central nervous system, which includes the spine and brain.
‘The most detrimental location is the brain,’ says Fenella Kirkham, professor of paediatric neurology at University Hospitals Southampton and adviser to the Stroke Association.
She adds: ‘Around one in every 10,000 people are known to be affected by an AVM here.
“However, we can only record arteriovenous malformations in the brain that have caused symptoms, such as a bleed or seizures, or have been discovered in the course of tests for something else, such as headaches.
‘The number of undiscovered AVMs could be higher.’
Arteriovenous malformations (AVMs) affect around one in every 100 Britons. “With no symptoms over the years – no one had any idea it was there,” said Kat
The danger with arteriovenous malformations is their effect on blood flow.
Normally, the heart pumps blood through arteries, which pump it into smaller arteries before it enters the smallest and most delicate vessels, known as capillaries. This process gradually reduces the blood’s pressure and speed.
With AVMs, the capillaries are missing — a short circuit, so to speak — putting strain and pressure on the surrounding blood vessels.
‘Sometimes AVMs cause no symptoms or harm, and those who have them simply get on with their lives, unaware of these badly wired blood vessels,’ says Michael Gross, a neurologist at BUPA Gatwick Park Hospital, Surrey.
‘However, it’s thought that in up to 4 per cent of AVMs of the brain there’s suddenly a bleed because the vessels burst under the strain. This is more likely to occur in those under 40.’
The extent of the damage also depends on the location. In certain areas of the brain it can be devastating, as Kat was to discover. Her bleed was in the brainstem, the ‘fusebox’ that controls abilities such as eye movements, hearing, speech and swallowing.
It’s also involved in movement, since impulses generated in the brain travel through the brain stem on their way to the arms and legs.
Incredibly, Kat remained conscious throughout the AVM.
‘It was terrifying and totally surreal,’ she says. ‘I felt instant paralysis, speech and swallowing problems.
“During the 15-minute ambulance journey, I also started to get tinnitus, where my ears started to ring.
‘My balance was immediately shot, too — I couldn’t hold my head or sit up unassisted.’
“I knew that my life would never be the same again. All those things you take for granted and never expect to change were just a memory,” said Kat
The location of the stroke meant that at first doctors could do nothing except observe Kat. The AVM was deep in the brain and so was too dangerous to access.
‘It felt unreal,’ says Kat. ‘I was struggling to come to terms with what had happened. A year on, I can only imagine how earth-shattering it was for my family.’
It wasn’t until a week after the blood vessel burst that doctors could perform tests. It was then they broke the news to Kat that she’d had an AVM in the brainstem.
Unfortunately, this ruled out the possibility of surgery to block the faulty vessels — vital to prevent the significant risk of a further bleed. It was also far too risky to drain the area of excess blood to limit the damage.
‘I knew that my life would never be the same again,’ says Kat. ‘All those things you take for granted and never expect to change — walking to the shops, holding your baby, even cutting up your own food — were just a memory.
‘Though mentally I was still me — there were no neurological effects at all — physically I was a totally different person.
‘For someone who had spent their life being physical — riding my beloved horse D’Arcy, walking, being out in the open air — it was a horrifying new world.
‘Worse still, to a certain extent, was that it was a world I was all too familiar with — my father had suffered a severe stroke ten years previously, caused by a blood clot, not an AVM. This made it particularly hard for my mum.
‘Jamie and I were also worried about the effects on Louis, who was then two. We worried he’d be scared to see me the way I was, so decided not to bring him into the hospital for three weeks. Of course, I missed him terribly.’
After five weeks, Kat was moved to the brain injury rehabilitation centre at The Royal Victoria, Dundee, and embarked on a rigorous programme to help her cope with the consequences of having a major stroke at such a young age.
‘The effects of such bleeds can be catastrophic, but improvement can occur for months — sometimes years — after the brain haemorrhage,’ says Professor Kirkham.
‘The main hope is something known as neuroplasticity — essentially, the brain re-wiring itself. Certain parts of the brain take over the work of damaged parts.
‘There is also evidence of nerves only being stunned in such bleeds (rather than totally destroyed) and “waking up” months later.
‘Additionally, as the months pass, the pressure of the bleed on surrounding nerves eases off, which can also help with rehabilitation.’
Kat has coped by simply taking things day by day.
“For someone who had spent their life being physical – riding my beloved horse D”Arcy, walking, being out in the open air – it was a horrifying new world, ” said Kat
‘Bizarrely, it’s a bit like being back at school,’ she says.
‘The routine is such that you have daily physiotherapy, work with speech therapists, and practise and re-practise movements to help regain your balance and some semblance of your former strength.
‘As the days turned to weeks and months, things did start to improve. My ability to swallow got better.
‘I could hold up my head after two months, and was learning to stand, albeit supported, after six months.
“My eyesight, which had completely gone, returned partially after a month — who’d have thought blurry vision could bring such joy.
‘Also my ability to communicate improved. It’s by no means perfect — it is slow and deliberate — but being able to make myself understood is a huge step and goes a long way to take away the isolation.
‘Admittedly, it wasn’t always easy to keep positive. There were — and are — dark times.
‘These come early in the morning when I’m in bed, alone with my thoughts. You can’t help but think about how it used to be and how it could have been.
‘I remember also once catching sight of myself in the mirror when I was trying to eat. Not only was I continually missing my mouth, but I was dribbling because the right side of my face is paralysed.
‘You can’t get away from the extent of your disability when you see things like that.
‘But nevertheless, achieving certain physical milestones — plus the support of my parents, husband and son, who visited every day — helped me get through it.
‘As did painting, for which I have developed an unbridled passion. The good thing about art is that you’re never wrong!’
In November — after a full year in the rehabilitation centre — Kat was allowed to come home.
‘It is a joy to be back. But things are very different now,’ she says.
‘Because I can’t look after myself, I need 24-hour care, which is hard, but necessary, to accept.
‘Being in a wheelchair makes life interesting. We have an Irish wolfhound who is about my level, so my face gets licked a lot.’
‘Fortunately, I have a lady who looks after me and Louis — and Jamie obviously helps, too.
Kat adds: ‘It’s very different with Louis, as well. Now aged three, he loves painting, so we can sit on the floor and do that together.
‘Physically, I still get the shakes in my head, neck and left hand — though I can tie it down if it gets particularly bad.
‘I also have constant pain down my left-hand side — it feels a bit like a Chinese burn.
“The tinnitus is really annoying, too. And let’s not forget the continual worry of a re-bleed — that would wipe me out, I reckon.’
The good news is that Kat was recently deemed suitable to have a treatment known as Novalis radiosurgery. This is a surprisingly simple treatment where a beam of radiation is used to blitz the damaged blood vessels, so they shrivel up and are less likely to bleed again.
The patient wears a special mask to keep them totally motionless during the 20-minute procedure. The hope is that this treatment will reduce the chance of Kat having another stroke.
‘Unfortunately, it can take up to two years to see if the blood vessels have been suitably zapped, but we’re all positive,’ she says.
“And, in the meantime, I intend to get on with things. A few weeks ago I held an exhibition to raise money for the rehabilitation centre where I spent such a long time.
‘I’m also determined to continue with the physiotherapy — I will walk again some day.
‘So that’s my life. OK, it’s not the life I would have chosen for myself, but what hasn’t changed is my wonderful husband, friends and family — plus my gorgeous son.
‘They are my inspiration and I will continue, I hope, to make them proud of me.’
To donate to the Centre for Brain Injury Rehabilitation in Dundee or for information, visit errolpark.co.uk; stroke.org.uk