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'I didn't know how a child could survive with a heart like that'

‘When I saw a picture of Felix’s heart, I could see it wasn’t normal. I remember thinking: “I don’t know how a child could survive with a heart like that,”‘ says mum Kayleigh Starkey-Savage.

Kayleigh’s son, Felix, now four, was diagnosed with a rare combination of multiple heart defects while still in the womb.  

Despite being told he might not survive, the tiny baby defied expectations and at four years old, Felix is thriving.

Now, Kayleigh and her family have taken on the British Heart Foundation’s (BHF) London to Brighton Bike Ride to honour their son’s incredible journey.

Mum-of-two Kayleigh, 35, says: ‘Felix is such a superstar and loves being a big brother.

‘When we first learnt that Felix had his heart condition, our idea for what life would be like as a new family was completely shattered.

‘But so much of that image we had has been restored thanks to the lengths the team around Felix have gone to, to give him the best chance at life.’

Kayleigh and her husband Gary, 38, who also have younger son, Sybil, 18 months, found out Felix had pulmonary atresia, a hole in his heart and aortic stenosis at his 21-week scan. She said she looked at the scan as that there were ‘bits missing’.

‘When we were having the scan, medics told us his heart didn’t look right and they had some concerns.’ she says. ‘It was absolutely devastating.’

The complications meant that Felix’s heart wasn’t fully developed, preventing normal blood flow. He also had a dysplastic left kidney – a kidney which didn’t develop properly and can have cysts.

The couple went from happily expecting their first child to having to make the the heart-breaking decision to either continue with the pregnancy or terminate. 

However, they were given a glimmer of hope when further scans revealed that part of Felix’s heart – the arterial branches – had started to develop.

The cardiac teams then started talking about ‘what could be done’ and Kayleigh and Gary started to dream of taking their baby home.  

Felix was born in May 2019 under supervision at St Michael’s Hospital, Bristol. A day later he was transferred to the children’s hospital in Bristol where Kayleigh and Gary were told to prepare for the worst – news they had not expected.  

The next few days were a waiting game but, when Felix was 10 days old, surgeons decided to insert a shunt into his pulmonary artery to help it function properly.

This would give him a chance to grow stronger ahead of further surgery at a later date. 

Kayleigh said: ‘We always say our hearts had to break for his to be repaired.

‘It went against all natural instincts as a mother to hand Felix over, but surgery was his only chance of survival.’

Thankfully, the surgery was a success. Felix spent the next few days recovering until finally, at 23 days old, he was able to go home for the first time. 

‘I find it amazing that they were able to operate on a heart the size of my thumb nail,’ says Kayleigh.

‘Our consultant said that when he started his career, the surgery he performed on Felix wasn’t even possible.’

But Felix wasn’t out of the woods. In March 2020, he needed a second surgery to replace his shunt and patch the hole in his heart.

While he has continued to thrive – reaching his fourth birthday in May – he is due to have further heart surgery later in life.

But Kayleigh says that what the family have been through already shows the importance of the work of the British Heart Foundation.

‘It really puts into perspective how important this research is and how far things have come in such a short time,’ she says.

To raise funds for the BHF, Kayleigh and Gary, together with her sister, joined 10,000 riders on June, 18, who took on the famous British Heart Foundation London to Brighton Bike Ride.

Cyclists of all abilities took on the challenging 54-mile cycle from Clapham Common to the Brighton seafront, all with the same mission – to fund lifesaving research.  

This year, the event is it’s on its way to raising a staggering £2 million for the charity’s research into new treatments and cures for heart and circulatory diseases.  

Heart defects are diagnosed in at least one in 150 births – that’s an average of 13 babies each day in the UK – with more diagnoses later in life.

Before the BHF existed, the majority of babies diagnosed with a severe heart defect in the UK did not survive to their first birthday, but today, thanks to research, more than eight out of 10 survive to adulthood.  

Roisin Greenup, Senior Events Manager at the BHF, added: ‘It’s fantastic to see Kayleigh and her family’s passion and determination in helping us fund lifesaving research.  

‘Without the dedication of our cyclists and the commitment of fundraisers like them, we wouldn’t be able to fund research that has already broken new ground, revolutionised treatments and transformed the lives of millions of people in the UK.’

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