Lindsay Copley
Published November 22, 2025 11:00am
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Heaton had two holes in his heart and would need open heart surgery to fix it (Picture: DF Photography, British Heart Foundation)
Sitting in our campervan in the hospital car park, my fiancé Jason and I had tried everything to distract ourselves.
After a walk and a coffee, we’d resorted to watching Spiderman films, but it wasn’t working. I was still anxious.
Inside Leeds General Infirmary, our 2-year-old son, Heaton, was undergoing open-heart surgery to fix an Atrioventricular Septal Defect (AVSD), a congenital heart defect characterised by a large hole or holes in the wall between the chambers of the heart. The waiting was torture.
Before Heaton, the only family history came from my maternal grandad, who had blocked arteries and underwent heart bypass surgery in his late 60s.
I thought heart issues were generally experienced by older people so when I fell pregnant in 2021, it wasn’t on our radar. In fact, all my scans came back clear, my morning sickness eased after 20 weeks and though I was in labour over several days, in October I had a ‘normal birth’.
At first, Heaton seemed healthy, hitting all his early developmental milestones.
At first, Heaton seemed healthy (Picture: Lindsay Copley)
I was confident that his heart wasn’t the problem (Picture: Lindsay Copley)
On a couple of occasions, he was poorly with a rattling cough and as a worried first-time mum, I took him to the GP. The doctor thought it was a virus and gave him an inhaler.
Then, in the autumn of 2022 when he was around nine months, I spoke to his childminder – a former ICU nurse – about how I’d noticed a blue tinge to Heaton’s lips, hands and feet after the bath.
She immediately advised us to get him checked out.
Our GP tried to listen to his heart, which I thought was odd as I didn’t think that was the issue, but Heaton grew so distressed she referred us to Grimsby outpatient’s department for further investigation.
When the consultant asked to ‘speak to Mum’, I realised something must be wrong (Picture: Lindsay Copley)
I’m very anxious around hospitals and suffer with panic attacks, but when I took Heaton in in March 2023, I thought nothing of it – that’s how confident I was that his heart wasn’t the problem.
Nurses took him for an ultrasound and soon after, the consultant asked a nurse to play with Heaton so he could ‘speak to Mum’. I realised something must be wrong.
I was then told that Heaton had AVSD. He had two holes in his heart and would need open heart surgery to fix it.
It was heart-breaking to see the complicated tubes protruding from his chest (Picture: Lindsay Copley)
I was so distraught, I couldn’t take it in. The consultant asked me to come back the next day with Jason.
‘Why weren’t the holes picked up with the pregnancy scans?’ we asked. The explanation was that sometimes these things can simply be missed.
We were then told Heaton would be put under the care of the specialist cardiac team at Leeds General Infirmary and we would see them every few months for an ECG, echo scan and blood tests.
We spent 18 months waiting to find out when Heaton’s surgery would happen (Picture: Lindsay Copley)
The operation was supposed to take five or six hours but it ended up taking nearly eight (Picture: Lindsay Copley)
Other than watching for any signs of breathlessness, Heaton could carry on ‘as normal’.
Of course, ‘normal’ suddenly felt very different.
I run my own cleaning business but work had to take a backseat; I spent much of my time feeling sick with worry and it was too difficult to focus. Being self-employed created extra difficulties for our income.
While Jason worked for the police, he also struggled to make it through the days. The waiting was undoubtedly the worst.
As Heaton’s case wasn’t urgent, we spent 18 months waiting to find out when his surgery would happen, calling up most months to check.
Eventually, in August 2024, we finally received the call to say they had space to operate on him on 11 September.
Thankfully, surgeons successfully closed both holes in his heart (Picture: Lindsay Copley)
At 3pm that day, we took Heaton to theatre and Jason held him whilst he was put to sleep. Once again, all we could do was wait.
The operation was supposed to take five or six hours but it ended up taking nearly eight. Time seemed to stretch on forever. Thankfully, surgeons successfully closed both holes in his heart and repaired two leaking heart valves, which is why it took a bit longer. Heaton was out of surgery and OK. Better still, we could see him.
As much as I wanted to rush to his side, I’d got so worked up with my anxiety that at first, I was too scared to visit the chaotic ICU.
Jason, however, went up straight away and sent me photos. Heaton looked so vulnerable, and it was heart-breaking to see the complicated tubes protruding from his chest.
Today, Heaton is a hilarious four-year-old who loves Spiderman (Picture: Lindsay Copley)
Eventually I plucked up the courage to go up but my crippling anxiety of hospitals had crept back. It was painful not being able to spend hours by his bedside. I took comfort knowing he had great care with the nursing team.
After two days, Heaton was moved to High Dependency. Though he was quite grumpy about being poked and prodded, his cheeky charm meant everyone there loved him and he ate them out of ice lollies.
After just five days he was allowed home to continue recovering. Like any typical toddler though, he just wanted to run around and play – and not much has changed since.
I couldn’t be prouder of the person he’s becoming and seeing him win a BHF Young Heart Hero award in September topped it all off, says Lindsay (Picture: Lindsay Copley)
Today, Heaton is a hilarious four-year-old who loves Spiderman, arts and crafts and racing toy cars around the house. He is thriving at nursery and can usually be found doing funny dances or pulling silly faces. He will proudly show off his ‘superhero scar’ to anyone who asks (and some who don’t).
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He still has annual check-ups and I think he’ll continue to be monitored by the cardiology team for life – a small price to pay for the happiness he brings us every day.
I couldn’t be prouder of the person he’s becoming and seeing him win a BHF Young Heart Hero award in September topped it all off.
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He’s been through so much in his short life already, and I’ll never take him being here for granted.
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