“I think your baby has a poorly heart” – eight words that changed our lives.

Jon Arnold is Tiny Tickers’ Chief Executive, having been inspired to join the charity by his experiences of having a daughter, Zoe, with a serious heart condition. This is Zoe’s story…

Andrea and I walked into our 20 week pregnancy scan with excitement on our faces and one big question on our minds – would our first baby be a girl or a boy? We walked out of that room shell-shocked, and with the single biggest question of all – would our baby survive?

We didn’t see it coming. How could we? We were blissfully ignorant of the world of cardiac defects, open heart surgeries, oxygen saturation levels, and machines that go beep in the night.

With one sentence – “I think your baby has a poorly heart” – our sonographer changed all that. The blissful bubble of our first pregnancy burst. The world of CHD swallowed us.

Our baby was diagnosed with a complete atrioventricular septal defect – a big hole in the middle of all four chambers of the heart, and one valve where there should be two.

Then we were told the double whammy – that our baby would almost certainly have Down’s syndrome. In happier news, our initial question was answered and we learnt Andrea was expecting a girl. Daddy’s little princess. A very precious little princess.

We went through a process of mourning the loss of the image of the baby we thought we were going to have. After the tears and all the pointless “why” questions, came the resolution to be strong and do whatever we could do for our little girl.

She was born prematurely – sneaking in an extra Christmas, albeit one spent in a hospital cot decorated with a bit of tinsel. As expected, she had one extra chromosome and fewer heart walls and valves than most babies. But, because of our sonographer’s eagle eyes, we were in the right place, with the right experts treating her from the very first opportunity. Early detection of serious heart problems is so, so important.

We decided a strong name was called for and chose Zoe, meaning ‘life’. Our girl was going to be a fighter, we decided. And hoped.

And Zoe did fight. She had open heart surgery at three weeks old, before she was even due to have been born.

That morning Andrea and I got up from a restless sleep, bathed and cuddled Zoe until the knock came on our hospital room door. We led a small procession from the ward to the operating theatre. I carried Zoe all the way – the hardest thing I have ever done.

We lay Zoe on the table, kissed her, told her we loved her – then left her in the hands of the experts. My knees buckled as I walked out of the theatre – I could hardly stand.

All your natural instinct as a parent is to protect your baby. And yet here I was, leaving my three-week-old to have her chest cracked open and her tiny acorn-sized heart cut into. I felt utterly powerless and useless.

The rational part of my brain knew this was Zoe’s only hope – the only thing that could save her life – but the rational part of my brain had very little chance of making its voice heard amongst the super-charged emotions of that day.

And so began eight and a half hours of aimless walking, caffeine-drinking, and wall-staring until the call finally came. I have a strong memory of sitting on our bed in the hospital accommodation gazing at 60 Minute Makeover – it’s odd what details you can remember.

The ringing phone brought good news – Zoe was out of surgery and all had gone well. The walls of her heart had been sewn together, and a second valve had been built where there had been only one.

The sight of her, at just over 6lbs, lying on a small cot swamped by the vast machinery that was keeping her alive was so bitter sweet. Here was our little princess – alive, showing all that fight we’d longed for, but with more than 30 wires and tubes going in or out of her tiny body.

Her chest was still open because the swelling was too great to shut it. Her wound was covered by a sheet of clear plastic (well, probably something a lot more technical, but it looked like sticky-backed plastic to me). I stared into her chest cavity, numbed by the emotions of the day but conscious that being able to see the inside of your daughter’s chest pulsing up and down was something no parent was supposed to see.

Next came the crucial hours post-surgery. Overnight, Zoe’s heart started racing – a problem called tachycardia. Exhausted, Andrea and I had gone for a few hours’ rest, but the shrill phone ringing in the small hours jolted us awake. With that type of call, you’re expecting the worst, and we bolted down the stairs separating the parent room and intensive care in seconds.

I’ll be brutally honest – I expected we’d arrived to watch Zoe die. But, somehow, the doctors calmed her racing heart. How close had it been? Put it this way, said one doctor, it was like she was doing 100mph the wrong way down a motorway, at night, without the lights on. She’s okay until something comes the other way, he said. The road was clear that night. We were lucky.

Slowly, Zoe got stronger. The drains, wires and tubes slipped away. She moved to the high dependency unit and then to the main ward, creeping closer and closer to the door and her first trip home.

At six weeks old, we brought her home. Finally, we could start to build something of a normal family life. Or so we thought. Just a week and a half later, however, we nearly lost her all over again.

Zoe’s chest scar got infected. Instinctively, Andrea realised something was wrong – a mother’s intuition is a powerful thing. A trip to the GP later and Andrea was told to head off to the heart ward for advice. But, somewhere in the 15 minute drive between the GP and the hospital, Zoe collapsed. When Andrea went to get her out of the car seat, she wasn’t breathing.

That mother’s instinct kicked in and she sprinted with Zoe into the nearest hospital entrance, screaming for help. Undoubtedly, Andrea’s quick actions saved Zoe’s life. Superheroes do exist – I’m married to one.

Fate, which seemed to be playing a cruel trick until now, suddenly took a swing for the good. The nearest ward to the hospital entrance was a children’s ward. A ward where a nurse was sat in the staff room reading an infant resuscitation manual cramming for an exam the next day. A ward where the paediatric crash team was holding a meeting. They went to work.

Incredibly, nine minutes after Andrea ran through the doors cradling her, those nurses and doctors brought Zoe back. Having helped her survive open heart surgery; having helped her survive repeated tachycardia; the wonderful staff of the NHS now saved Zoe’s life all over again. See, I told you superheroes definitely do exist.

I’m writing this eight years later, and Zoe is doing really well. Her heart is strong. Her extra chromosome suits her just fine. She rides horses. She loves swimming. Her idea of perfection is a tub of ice cream and a Peppa Pig DVD on a loop.

She’s changed my life. Among other things, I changed my job to run Tiny Tickers – a wonderful charity that exists to help heart babies. Zoe’s story could have ended so differently. A combination of supreme medical skill, Andrea’s instinct, and sheer blind luck means Zoe pulled through.

Tragically, for too many other babies, and their parents, the story doesn’t have such a happy ending. Changing that for future generations is what inspires all of us at Tiny Tickers each and every day.

I always thought I’d teach my kids about life, but it turns out it was Zoe who taught me. About hearts; about disability; about strength; about love.

And about Peppa Pig, of course.