Parents’ ‘petrifying’ choice on lockdown heart op

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Media captionBrayden was born with a congenital heart disease

As though the prospect of undergoing open heart surgery was not daunting enough, seven-year-old Brayden had to do it during a global crisis.

As the coronavirus pandemic took hold during lockdown, his parents watched his congenital heart disease worsen.

They faced the terrifying choice between an operation to ultimately save his life and the risks of Covid-19.

However, after eight hours of surgery, the little “Rhondda heart warrior” is home and looking forward to Disneyland.

Born premature, weighing less than 5lbs (2.26kg), Brayden was diagnosed with pulmonary atresia, a condition which prevents the heart valve forming properly.

He had surgery when just seven weeks old to fit an artificial artery but his parents, Emma and Craig Bull, always knew a second, larger operation would be needed. They just never imagined it would be during a pandemic.

It was not until he was six that the signs began to show that his heart was deteriorating. The stent was old and the left ventricle was not growing properly, putting pressure on the right one.

Doctors said Brayden would need a transplant this year. Then coronavirus struck.

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Brayden’s condition worsened during lockdown

Brayden was immediately shielded but his illness and other conditions meant he was at ‘high risk’.

“What can you say? I just couldn’t believe this was happening,” said Emma, 37.

“So much was going through my head, seeing [the virus] get closer to home, looking at risks and possibilities.

‘Terrifying’

“The thought of him having this surgery in this pandemic, with him being so vulnerable, was terrifying. I had this fear he was going to catch it.

“We were reassured they would try to fit Brayden in, in the safest way possible. But he would need a heart by-pass for several hours and what scared me was knowing nothing is totally safe.

“It felt like I was potentially putting his life at risk, but even when Brayden was shielding, he was deteriorating at home.

“He was very sleepy throughout the day and sometimes would go quite blue around the mouth.

“So I knew, if he stayed at home, he could die and there would be nothing I could do. That scared me even more.

“It was a horrible position to be in and we were petrified not knowing what to do for the best.”

They opted for the surgery, but after travelling from their home in Tylorstown, Rhondda Cynon Taf, to Bristol Royal Hospital for Children, the procedure was cancelled due to emergency admissions.

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Brayden was on a heart by-pass during the eight-hour operation

They returned a week later to a hospital that was unlike any they were used to – and a changed city.

“The hospital looked scary,” admitted Emma. “The staff looked as if they had come from space with all their kit on and with all the security and restrictions, it just didn’t feel right. It felt a bit like a prison.”

To Emma and Craig, things did not feel much better outside. Just days earlier, a statue of a slave trader had been pulled down and thrown into the city’s harbour during Black Lives Matter protests.

“We had to keep ourselves busy during surgery but walking the streets of Bristol at that time felt daunting. We just didn’t know what to do with ourselves,” she recalled.

‘Remarkable’ recovery

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Brayden is hoping he can go to the park for the first time since February when shielding finishes

With the hospital’s family rooms taken and nearby hotels closed, Emma spent the week sleeping on different hospital beds as Brayden recovered.

“It was difficult because I had left the rest of my family at home and I was on my own. There was no-one there who could even give me a cuddle because it wasn’t allowed,” she said.

However, not only was the operation a success but Brayden made a “remarkable” recovery and just five days later, he was home.

He is getting stronger each day and having self-isolated since February, is making plans for when shielding ends on 16 August.

“It’s been tough on his brothers and sister because all they hear from me is, ‘Don’t touch Brayden’, ‘don’t cough or sneeze over him’, ‘wash your hands’, ” said Emma.

“I couldn’t help wrap him up in cotton wool but I’m starting to ease off a little now because I know his heart is fixed.

“He has really missed his school friends, who sent a lovely video message with their teacher, and he wants to go to the park. But the first thing he said after the operation was to go to Disneyland.”

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“He’s always showing off his scar… he’s quite proud of it,” said Emma

Family and friends hope to make that happen by fundraising with the help of the Heart Heroes charity.

“I think he’s inspired a lot of people who have followed him through it all. That support has been amazing and has kept me going,” said Emma.

“They’ve nicknamed him the Rhondda Heart Warrior and that’s just what he is.

“You do feel guilt, that this little boy has been through so much throughout his life and then has this surgery during a pandemic. I can’t describe how proud I am of him.”



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