Born in the early 90s, I entered the world weeks earlier than everyone expected, which was exciting … until it became worrying.
"A hole in her heart?" my mother said.
"Yes … it looks like she has a septal defect," the doctor said.
I weighed in at around six pounds (2.72 kilograms), leaving my parents and grandparents speechless.
I don't remember any of that, but it must have been a scary experience, given how much my family still worries today.
Even though I'm a full-grown adult, I'm always reminded of this hole by Mum, Dad, Nan, Pop, and everyone else; like I'm still that little baby in the hospital bassinet.
It turns out, I'm not the only one.
In fact, one in every 100 babies born in Australia are diagnosed with a congenital heart disease (a disease found at birth), and a septal defect is one of the most common.
What is a septal heart defect?
If you're not completely up to speed with how the heart works (not the one that causes heartbreak but the one our organs rely on), then let's take a second to get to know it.
Stop for a second and clench your fist — that's roughly how big your heart is.
It's not massive, but it has a huge job of pumping oxygen-rich blood throughout your body to keep it functioning, with the help of its trusty chambers, valves, arteries and veins.
The heart has four chambers in total: two on the left and two on the right.
The upper chambers on each side of your heart are called atria and the lower chambers are called ventricles.
In between is a muscular wall called the septum, so when we refer to a "hole in the heart", this is where it usually shows up.
The upper and lower chambers of the heart work in partnership together to keep the blood and oxygen flowing: the right atrium collects blood from the body that's low in oxygen and pushes it through the right lower ventricle, which gets sent to the lungs for an oxygen top-up.
Once our blood is full of oxygen, it passes back through the left atrium down to the ventricular chamber, where it gets pumped out to the rest of the body.
But, if there's a hole in the septum, it can disrupt this process.
There are many forms of septal defects, but the most common forms are atrial septal defects (found in the upper section of the heart) and ventricular septal defects (found in the lower section of the heart).
When doctors weigh up the risk of whether it needs to be closed, it comes down to the strain it's putting on your heart and lungs, how large the hole is and where in the septum it's found.
How does a hole in the heart happen?
A hole in the heart actually starts off in a natural and essential way.
When we're in the womb, we get oxygenated blood through our mother's placenta, which uses the umbilical cord as a passage for oxygen-rich blood to pass through.
Because we're not breathing in the womb and the placenta has already oxygenated our blood, our natural hole deters blood from going to our lungs.
Instead, it sends it straight across to the left atrium, so it can be pumped out to the rest of the body.
Once you're born and start using your lungs, this hole usually closes within the first day of birth — but for some babies it doesn't.
There are a couple of other ways septal defects can form in our heart.
In some babies, the defect begins in the first eight to 10 weeks of pregnancy when the heart chambers are being formed (for some women, this is before they even know they're pregnant).
Septal defects can also be common when large amounts of alcohol have been consumed during pregnancy (often referred to as fetal alcohol spectrum disorder).
Sydney-based cardiologist David Celermajer, who specialises in congenital heart disease, says some genetic conditions can also play a part.
"The chance of having a baby with a hole in their heart is about five in 1,000, but if you've got a rare gene-carrying ASD [atrial septal defect], it could be 50-50," says Dr Celermajer, who is also a clinical director at the Heart Research Institute.
"In the majority of cases, there's not just one genetic or environmental cause."
Ventricular septal defects are one of the most common septal defects, making up 30 per cent of heart problems in babies, compared to atrial septum defects, which only appear in 10 per cent of cases.
These days, technology means doctors can pick up heart defects as early as 18 weeks, enabling parents and doctors to better understand the impact.
What are the signs of a septal heart defect?
Many people born with a septal heart defect still live healthy lives (like me), but there are a few warning signs to look out for if your child has been diagnosed, or you're living with someone who has it.
Dr Celermajer recommends anyone born with a septal defect who hasn't been to a cardiologist should book in to see a doctor at least once if they're over the age of 18, to see if the hole has closed and, if not, make sure that it's not causing any heart or lung issues.
"There have been situations where holes that aren't completely benign have created issues, and the common symptoms to look out for are breathlessness on exertion or heart palpitations," he says.
The break in the dividing wall can mean the heart may experience more pressure than usual, which can lead to arrhythmia or even heart failure.
In young children, this can hinder their growth, create recurring chest infections and in some severe cases, lead to increased blood pressure in their lungs.
If your child has been diagnosed with a septal defect and is struggling to play sport with their peers (and feeling breathless), it might be a sign their heart and lungs are under strain.
Strain on the heart also happens when you're pregnant, so if you're planning for a baby, it's also important to see a cardiologist to avoid any complications down the track.
Despite some of the issues it can create, it's not all doom and gloom.
One third of ventricular septal defects usually close on their own.
And while most atrial septal defects don't close naturally, there are plenty of people walking around with a "hole in their heart" because in most cases, it doesn't cause any harm.
"There's lots of inborn problems with the heart … the hole in the heart is one of the simple ones and it's one with the best outcome," Dr Celermajer says.
"The vast majority of people with holes in their heart live long and healthy lives.
"Only if there are symptoms or signs that the heart is under significant stress, then we'll close the defect … and that's if someone is very breathless or has other symptoms.
"The second is if their heart becomes enlarged."
If a hole does need to be closed, non-invasive surgery enables doctors to perform the operation via a catheter in the leg, providing quicker recovery compared to open-heart surgery.
Life beyond a 'defect'
Back to that little baby in the hospital bassinet in the early 90s — even though I was monitored closely by doctors in my early days, life is now very normal for me.
I weight train regularly, I'm trying to get better at long-distance running and I can hold my breath under water – all things that can be tricky when you have a hole in your heart.
Almost three decades later, I wouldn't even know I was born with a septal heart defect.
It doesn't mean I don't think about it though — and my sometimes overly attentive family keep it in the front of my mind.
After speaking with Dr Celermajer and hearing benign holes can still cause issues, I figured it was probably time to get my heart checked.
So, I booked in with my usual doctor to get an electrocardiogram (also known as an ECG), which measures your heart rate and picks up any irregular patterns.
After the test, the doctor checked to see if he could hear any heart murmurs, which is another sign a hole is still open.
As I waited to be called back into the doctor's office to discuss my results, I could feel my palms getting sweaty as I waited nervously to hear something was wrong.
"Hmm … do you exercise a lot?" the doctor asked as he looked through my results.
"Yeah, I try my best to work out around five times a week?" I said.
"Well that explains it," he said.
"Explains what?" I replied as I started to worry.
"It explains why your resting heartbeat is so low. The average heart rate is between 60-100 beats per minute and you're at 59," the doctor replied with a smile.
As I've grown older and watched many of my loved ones pass, I've changed the way I look at the hole I had in my heart.
It wasn't a defect, but more of a reminder to look after my health.
While there was once a piece missing inside my heart, my family have always done a great job of filling it with love and support.
