News article courtesy of Gloucestshire Live
Naayt Eberle was born with a rare heart condition which meant he had to have open-heart surgery at just nine days old.
If you didn’t know any better you could be forgiven for thinking that Naayt Eberle is a healthy little boy.
Running around as much as any other toddler would, the two-year-old enjoys discovering the world around him and making new friends.
Except he isn’t a healthy little boy and his blue lips and heavy breathing belie his true strength.
“He just goes around like a normal little boy, to him it’s the norm. But he get’s breathless so easily,” his mum Rose said.
For Rose and her husband, Markus, their world has been taken a dramatic turn after Naayt – the youngest of four siblings – came into this world.
Naayt was diagnosed with pulmonary atresia with intact ventricular septum – a rare heart condition while he was in his mother’s womb meaning he has a small right side to his heart and a leaky mitral valve.
Just nine days after he was born in March 2017 had to undergo open heart surgery.
Markus was there when Naayt went down to theatre as doctors operated on him as they did all they could to give him the best life he could possibly have.
“The first operation I wasn’t really too sure how to feel. There was no emotion.
“I wasn’t worried for some reason, it’s so bizarre. When he had his second op that really hit me.
“I walked out of the anaesthetist’s room, suddenly I realised this is real,” he said.
Since then Naayt’s been making leaps and bounds in his health, but there’s a persistent, nagging worry at the back of Markus and Rose’s minds.
Markus added: “We have come a long way since then to be when he’s this and how he is. There’s going to be one more I don’t want to experience it I don’t know how I’ll be able to cope.
“We wouldn’t wish it on anyone.”
There is uncertainty over the amount of major invasive surgery which he could have to undergo in the future.
Rose said: “It’s hard for someone to understand but you consistently worry round the clock, whether he’s having a feed, or he’s asleep. There’s always a different scenario. You’re consistently on edge.”
It is well known for parents to carry drinks bottles, nappies, toys, wipes, food, and so many other things when leaving the house.
But for Naayt’s parents they have to carry life-saving medical equipment.
Rose said:“You’ve got to take things with you. He’s got a defibrillator just because of peace of mind he’s got it with him.”
Markus added: “A consistent worry. Every day.”
The immense pressure of having to care for a frail child around the clock has taken it’s toll on the Eberle family.
Despite all the help they have received from the medical staff they have found it difficult to keep on top of everything that daily life throws at them.
As well as caring for Naayt, and devoting a huge amount of time to him, they also have to share their time with their three other children: Kayden, seven, Rachel, 11, and Jake, 14, as well as two dogs.
It has meant that Markus couldn’t work due to the anxiety and stress created by Naayt’s health.
He said: “You just don’t know the daily struggles. It’s a real struggle. You’re trying to balance everything.
“Whether it’s him, the seven-year-old the two teenagers, the dogs or us two.”
And that’s where they got help from Heart Heroes, a Gloucester-based charity that works to provide support for families like the Eberles who have a child suffering from a heart condition.
Run by Kelly Cornish, the charity organises events for families from across the South West to have some respite from the difficulties they face.
What does Heart Heroes do?
Kelly has provided more detail about the amazing work that Heart Heroes does.
She said: Congenital heart disease is one of the most common types of birth defect, affecting up to eight in every 1,000 babies born in the UK.
“To you and I, that’s eight superheroes that need a little help from us. Children with CHD have the same needs as any other child.
They face challenges, such as making friends, understanding their body as they grow, school, play and where they fit in society.
“In addition, however, children with CHD/heart conditions must navigate a parallel world; a world of cardiologists, echocardiograms, electrocardiograms, pacemakers, defibrillators and regular surgery.
“No matter how strong their superpowers may be, they need our support to help negotiate this maze of medical intervention and find happiness in the world outside.
“At Heart Heroes, we have the power to make that difference. With your help, we support families of children living with CHD/Heart conditions through a range of family events, fun activities and play therapy.
“Together, we can help our Heart superheroes soar to the heights of happiness and joy that they deserve.”
To find out more about Heart Heroes visit their website by clicking here.
A skydive has been arranged where hundreds of people hope to raise thousands of pounds to help provide a UK holiday for families later this year, in which Rose will take the plunge.