One in four have a hole in their heart that raises the risk of a stroke – but have no idea. Now doctors share signs you must know, and the checks you should ask for

Aimee Rogers was a long-distance runner who competed in ultra marathons. She ate well, had a healthy BMI – and her cholesterol and blood pressure levels were normal. At 40, she was a mother to two children, aged three and one. She seemed the least likely candidate for a stroke.

But one morning in March last year, at 6.25 Aimee got up to make a cup of tea – and collapsed. The entire left side of her body was paralysed.

‘I knew instantly it was a stroke – it was just like on the Stroke ActFast adverts on TV,’ she recalls.

‘The left side of my body just switched off, but I was still fully conscious and aware of what was happening. I tried to tell my husband, but my speech was slurred.’

After the ambulance arrived, the paramedic phoned ahead to the stroke unit at York Hospital. ‘The first question they asked was when was I last well,’ says Aimee.

This was because clot-busting drugs have to be given within four-and-a-half of hours of the first signs of a stroke to have any chance of working.

The drugs can make the difference between having a permanent disability, such as problems walking or eating and leading a normal life – or even between life or death.

But timing is critical – many patients arrive at hospital too late, or can’t have the drug because they’re already taking blood-thinning medication.

Crucially Aimee was still within the four-and-a-half-hour window. The ambulance raced the 22 miles from her home in Harrogate to York Hospital.

After a CT scan ruled out a brain haemorrhage, she began the drug treatment for a clot (known as thrombolysis). A little over 24 hours later a follow-up MRI confirmed she had a clot on the right side of her brain that had caused the stroke.

Fortunately, after checks on cognitive and physical function came back normal, Aimee could go home the next day – having been given more medication to prevent further blood clotting, including clopidogrel and aspirin.

And she was warned she was at high risk of another stroke for the next three months, while she had investigations for the underlying cause of the first one.

Indeed ten days later, she suffered one again. This time it was shorter lasting, a mini stroke or transient ischaemic attack (TIA), a temporary disruption of blood flow to the brain.

‘It came on gradually, with similar symptoms, but not all in one go,’ Aimee recalls.

‘My arms and leg were fine – but I was slurring, confused and my face dropped on the left side. They then subsided by themselves after three hours, without treatment.’

Understandably, Aimee developed severe anxiety – common for people who have a stroke. She also struggled with fatigue, brain fog and found loud or busy environments difficult.

She decided to resign from her high-pressured job as a director at a multi-academy educational trust.

‘I was worried I could have another stroke at any moment,’ she says.

Doctors urgently needed to find the cause. Aimee didn’t have high blood pressure, and wearing a heart monitor for 72 hours ruled out atrial fibrillation (an irregular heartbeat that can lead to strokes).

‘My stroke consultant bet money that I had a PFO – i.e., a hole in the heart,’ says Aimee. ‘But they wouldn’t test for it until last, because all the cheaper tests had to be done first.’

A patent foramen ovale (PFO) is a small opening between the upper chambers of the heart that usually closes after birth.

During development in the womb, a flap of tissue acts like a valve over the foramen ovale (or hole), to allow oxygen to circulate in the blood and bypass the lungs, explains Dr Dulka Manawadu, a consultant in stroke and general medicine at King’s College Hospital in London.

The flap of tissue is ‘like a swinging door during development in the womb, but after birth the flap is kept shut by pressure within the heart,’ she says.

It then seals over time in most people – but in some cases this doesn’t happen: around 25 per cent of adults in the UK have a PFO, often without knowing it, according to the British Heart Foundation.

Clots form in the body all the time and usually ‘travel through the veins and drain into the right side of the heart – all the blood on the right side of the heart then goes to the lungs, where the clot is filtered and broken down harmlessly back into the body’, explains Dr Manawadu.

‘But for those people where the flap fails to close, a clot can be pushed through the hole to the left side, where it can then travel directly to the brain, blocking an artery and causing a stroke.’

While a PFO doesn’t cause problems for most people, it can increase the risk of stroke for those with bigger holes or if they have an abnormally strong blood flow (known as the shunt) between the two upper heart chambers.

And whether a clot travels from one side to the other is often down to bad luck.

If a clot is in the right chamber of the heart at the precise moment someone does something to increase the pressure inside the heart – such as lifting a heavy object, being at high altitude or even straining on the loo – then the risk of it passing to the left side of the heart and to the brain increases considerably.

‘I’ve trekked at high altitude in Nepal, miles from any hospital,’ says Aimee. ‘I was incredibly lucky nothing happened then.’

In adults, it’s not easy to detect a PFO without a scan.

‘Because PFOs usually don’t cause any symptoms or any problems with how the heart functions, they are not something that’s routinely checked for,’ says Emily McGrath, a senior cardiac nurse with the British Heart Foundation.

‘A lot of the time when they are detected it’s because somebody was having tests for other conditions.’

A PFO can be corrected with surgery to seal the hole between the sides of the heart.

However, not everyone who is found to have a PFO will need treatment, explains Ms McGrath – generally it’s only if they’ve already had a stroke or are known to have a higher risk of clots.

To confirm the diagnosis, Aimee underwent a bubble-contrast echocardiogram, a sophisticated version of the standard check (an ultrasound of the heart) – the patient’s blood is mixed with saline to create tiny bubbles, then injected back into a vein and monitored to see how the bubbles move through the heart. If they appear on the left side of the heart, it means there is a hole.

‘When the bubbles reached my heart, my consultant stopped the test straight away,’ Aimee recalls.

‘There were so many bubbles passing to the left side, it looked like confetti had been thrown into the air.’

She was diagnosed with a pathological PFO, meaning the hole was large, half an inch – and the shunt was strong. There was no doubt it had caused her stroke.

But the NHS waiting list in her area for an operation to close it was three years’ long.

Patients with other risk factors such as being older or having high blood pressure were given priority, ‘and other than having a stroke, I was fit, well and of working age’, Aimee says.

Her already-high anxiety shot through the roof.

‘I didn’t want to wait years,’ she says. ‘I started calling the hospital, desperate to be seen sooner.’

Four months after her stroke she was offered a place on a trial using local anaesthetic instead of general anaesthetic, meaning she would be awake during the procedure – not an appealing thought, but it meant she could be operated on sooner (the wait is shorter, because not being put to sleep means an anaesthetist isn’t needed and patients do not need to stay overnight).

In August last year the procedure was carried out in the children’s operating theatre at Leeds Royal Infirmary (PFOs as large as Aimee’s are usually detected much earlier in life because they can cause fatigue, dizziness, breathlessness or a bluish skin tint in babies or children, triggering early cardiology assessments. The most experienced surgeons in this area primarily work with children).

The hole is closed using an implant that looks like a closed umbrella.

‘Once in position, they open it and it sandwiches the hole shut,’ says Aimee. Over time, heart tissue grows over it and seals it permanently.

There was a small risk of stroke during the procedure, but the biggest concern was bleeding.

She recalls: ‘I had to lie still for two hours afterwards because if the wound opened it would cause serious bleeding as it was a main artery. But I was home by 7pm that night.’ Aimee was told not to lift anything heavier than a kettle for a fortnight.

A year on from her stroke, life is gradually returning to normal – but it’s a new normal.

‘I still have fatigue and problems concentrating, which can take three years to improve I’ve been told,’ she says.

The stroke has also prompted Aimee and her husband, Phil, 39, a project manager at the Environment Agency, to re-evaluate.

‘Our children had seen their mum taken away in an ambulance,’ she explains. ‘We realised we didn’t need the latest car or latest home improvements. I could give up work or earn less money.

‘I asked myself: where am I spending my time? My children need their mum to be around. I’m replaceable at work – but not at home.’

Now Aimee has retrained in yoga and exercise referral and works with the charity Active Against Cancer, teaching yoga and exercise to patients young and old.

‘I show people how movement and breathing can help healing and outcomes,’ she says. Helping others recover is helping her to heal, too.