One quarter of the population live with a hole in the heart: Alison found she was one of them at age 49 when she had a stroke
St Vincent's Private Hospital Northside
Alison Blackband
For 49-year-old Alison Blackband, it all started at a family gathering in April this year, when suddenly she felt like she wasn’t talking properly.
“I was hearing the words differently to what I thought was coming out of my mouth and I actually asked a few family members whether I was having a stroke?” recounts Alison.
“I didn’t have any facial paralysis and there was no muscle weakness in my arms or anything like that – not really any of those classic stroke symptoms. It was only the transient speech deficit but when I woke up the next day and that seemed to have passed, I felt okay and so I went to work.”
While at work, a less dramatic repeat speech episode happened. Alison discussed the issue with a nursing friend who convinced her to go to St Vincent’s Private Hospital Northside Emergency Department, which lead to a six-day hospital admission. On the day of presentation, her brain imaging confirmed she had suffered a stroke.
Shock and ‘an emotional meltdown’ followed for Alison, which was compounded by the added revelation - following a consultation with St Vincent’s Private Hospital Northside leading cardiologist Dr Karthik Gopal - that she had lived with a hole in her heart since birth without ever knowing it!
But Alison is not alone, says Dr Gopal, with around one-quarter of the population born with a hole in the heart which should naturally be closed by birth, but isn’t.
Dr Gopal says one of the great mysteries about this form of congenital heart disease (CHD) is why almost 25% of the population have it - and in many cases they don’t even know they have a hole in the heart … AND in some cases, it doesn’t impact their health until they’re aged in their 50s, 60s and 70s!!
“Every fetus will have a hole in the septum, the wall that separates the heart’s chambers. The hole closes in most of the fetuses as they are born or shortly after but can sometimes remain open, leaving a hole in the heart,” says Dr Gopal.
“When a hole remains, it can cause symptoms or lead to complications. Symptom severity can vary depending on the size and location of the hole. Doctors often detect holes in the heart during a woman’s pregnancy or not long after birth.
“Some people only find out they have a hole in their heart when they are well into their adulthood. They may start experiencing symptoms – such as a stroke or their doctor may detect a murmur during a routine examination.”
Dr Karthik Gopal
Patent Foramen Ovale Device
A hole in the heart can occur in people with a family history of the condition or with chromosomal abnormalities.
Environmental factors may also affect heart development. For example, pregnant people who have exposure to certain chemicals or drugs during pregnancy (such as statins, certain type of blood pressure medication, alcohol and cigarettes) may be more likely to give birth to infants with heart abnormalities.
“What we do know is that people with a hole in the heart – called a Patent Foramen Ovale (PFO) are at a much higher risk of having a stroke, especially if they are under the age of 50,” says Dr Gopal.
“Of those people with a PFO, around one-third will have a stroke at some stage - while another two-thirds either won’t be detected or could be detected when they go to their GP. Simply by using their stethoscope a GP can pick up a heart murmur which can later be confirmed with an echocardiogram.
“When a young person has a stroke, other causes such as blood clotting disorders and irregular heart rhythm (atrial fibrillation) need to be excluded first. Once patients with a PFO have one stroke - and other causes of stroke have been excluded - unless the issue is addressed (with a surgical PFO closure) there’s a higher chance of them having another stroke. However, it can be hard to predict how soon that will happen.
“But we find many people - around one-quarter of those with PFO - have never had any symptoms. We find it a lot in people in their 60s and 70s.
“I have had a patient who experienced chest pain for the first time in his 70s who was diagnosed with a PFO. He previously had no other detected symptoms.”
Dr Gopal says that not everyone with a hole in the heart needs a PFO closure unless they’ve experienced symptoms such as a stroke because if all the PFOs are closed, then the number of people with non-problematic PFOs are still more than the problematic PFOs (those that cause a stroke).
“A PFO closure is performed, not as open-heart surgery, but as a much less invasive procedure using a catheter inserted through the groin. We insert a wire that goes all the way up to the heart and attach a synthetic plug (made of mesh) which acts like an umbrella and it opens once we reach the hole in the heart,” says Dr Gopal.
“A PFO can be closed via open heart surgery as well, but a percutaneous PFO closure is much less morbid.”
He says some good sometimes comes out of tragic events such as the death of legendary cricketer Shane Warne in 2022.
“Ever since his death, I’ve had more patients who I know have been proactive about their health and have asked their GP for a cardiac risk profile - both men and women - many of whom have been referred to me,” he says.
PFO Device Inserted
Alison’s hole in the heart was diagnosed with transthoracic echocardiogram and confirmed with a transesophageal echocardiogram which detected a 2.5mm hole in her heart.
“To this day I’m not sure if I was lucky or unlucky - but I’m going to run with the outlook that I was lucky as the outcome could have otherwise been worse,” says Alison who’s employed by Queensland Health in the pathology lab at the Royal Brisbane and Women’s Hospital.
“It’s a weird thing because you wonder how you got to this point in your life - almost half a century of living - without having any symptoms, awareness or knowledge of what is a major health issue? You wonder ‘Why me, Why now’? I don’t think I was under any more stress than usual when I had my stroke, so you just end up accepting that the timing was pretty random.”
Dr Gopal performed a PFO closure on Alison with a non-intrusive catheter inserted through the groin. The procedure was completed under general anaesthetic in less than an hour and she was home the next day.
Over one month on from her surgery, and Alison has changed her outlook on life and her health and has vowed not to be as casual about any symptoms which might arise – and she urges others to do the same.
“You don’t need a full board of traditional cardiac symptoms to give you a reason to be vigilant. Even if you have minor symptoms – especially if you’re experiencing them for the first time - I would urge everyone to see their GP and if you both agree further investigation or tests are necessary, then don’t hesitate,” says Alison.
Dr Gopal says another similar – and potentially more deadly condition which is under-diagnosed - is aortic stenosis which around 100,000 Australians are believed to have.
Dr Gopal says there’s five main symptoms of aortic stenosis (although not all symptoms are always present):
- Chest pain
- Breathlessness
- Dizziness
- Fainting or feeling faint
- Swelling in the feet and ankles.
A patient has a 50% risk of mortality in the first year, once they develop symptoms from severe aortic stenosis, which Dr Gopal says is a much higher mortality rate than any form of cancer.
“We’re only picking up one-third of the cases with aortic stenosis - we’re only treating the tip of the iceberg and you do wonder about the ones that you don’t see,” says Dr Gopal.
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