Have a Heart: Little Ethan's "smashing" recovery thanks to medics at Leeds' Congenital Heart Unit

But during the first five years of his life, Ethan Blackburn had to undergo three open heart surgeries after he was born with a condition called pulmonary valve stenosis.

The first operation was carried out when he was just five months old, with the most recent in 2018.

Now aged seven, his proud parents said he is “smashing” his recovery and paid tribute to the medics at LGI’s congenital heart unit as well as the Children’s Heart Surgery Fund for its support along the way.

Mum Rebecca, 33, of Castleford, said: “To be told your child needs heart surgery otherwise he’s not going to survive is gut-wrenching. But then you don’t have a choice, apart from just to go with it.

“You have to trust the doctors and nurses and surgeons to do what they need to. As it is, he’s had the best care you can imagine.

“The whole hospital and the charity, as parents you feel cared for, as well as the child.”

It was during a scan while Rebecca was pregnant that the couple first discovered Ethan was poorly.

Dad Marc, 35, said: “It was a shock. When he was first born, he was put into an incubator and checked over. They thought at that time, it was fairly mild, they were quite happy with him.

“But it developed and he got worse.

“He was about four months old when they told us how ill he really was.”

Doctors initially performed a non-invasive operation but when that proved unsuccessful, Ethan was placed on top of the urgent list for open heart surgery.

Weeks later, he was back on the operating table for the first high-risk procedure.

Sadly, that surgery led to complications and his second open heart surgery was carried out the following day.

Marc said: “They tell you this list of risks and maybe one or two might happen but after that first operation, everything that could go wrong, went wrong. His heart was beating the wrong way round, his kidneys failed...

“So the next day they had to take him back in.”

Thankfully the second operation was a success and it wasn’t until he reached the age of five that he needed further surgery.

Marc said: “We always knew he would need a valve replacement. We were hoping to get him as old as possible but we had to face the fact that it was doing more harm than good.

“He’s come out of that smashing. In the future there will be another valve replacement. We just want to hold that off for as long as possible.”

Despite another surgery looming, Rebecca said Ethan remains upbeat.

She said: “Day to day he’s still a happy boy. He doesn’t let it bother him. He’s unique - he’s one of a kind. He likes what he wants to like - and doesn’t go with the flow.”

Marc praised the “amazing” surgeons who have repeatedly saved Ethan’s life and said the work of the Children’s Heart Surgery Fund has been vital.

As well as providing them with accommodation during Ethan’s stays in hospital, he said the charity’s logo is on numerous pieces of equipment in the unit - from nurses’ trolleys to high-tech gadgets.

“It shows you they are funding quality stuff.

“These sort of charities shouldn’t have to exist, in my opinion, but they do, and they do so much.”

He urged people to back the YEP’s Have a Heart campaign and help the Leeds-based fund reach its £1m target this year.

“It’s a local charity and it’s vital to families with children and for the children themselves.

“For us it’s real, it’s not just something that happens to people you don’t know. It’s happened to us. And through that we’ve met other people. It’s more common than you think.

“It’s such a worthy cause. You can see how your money is spent.”

To donate or to sign up to Wear Red Day:

Visit chsf.org.uk/donate to give a one-off donation or to set up a regular, direct debit donation.

Or pay cheques to: Children’s Heart Surgery Fund at 3 Oxford Place, Leeds, LS1 3AX

To take part in Wear Red Day this Friday, February 7, visit chsf.org.uk/wear-red-day for a free fundraising pack

For those who can't take part in Wear Red Day, visit https://justgiving.com/campaign/wearredday2020 to donate.