Parents told to say goodbyes to baby after first of two open-heart surgeries say ordeal marked ‘darkest hours’ of life

A father told to say his goodbyes to his baby after the first of two open-heart surgeries before his first birthday described it as the “darkest hours of our lives”.

Joe Silver, 32, who lives in Harrogate with his wife of five years, Charlotte, also 32, said their first and only child, Billy, was not breathing when he was born four weeks prematurely via an emergency C-section on October 30 2023.

Rushed to Leeds Children’s Hospital, Billy was diagnosed with a serious heart problem where his blood was not pumping properly and he required emergency open-heart surgery to fit a plastic valve in his heart to keep it functioning at just a few weeks old – where his chest was “so swollen” doctors could not close his rib cage properly for a few days.

Billy pulled through, spending his first Christmas recovering in hospital, but in June 2024, he had difficulties breathing and required another emergency open-heart surgery as he quickly outgrew the valve.

Now 15 months old, Billy’s “strong-willed” personality is starting to shine through, and while he will need another open-heart surgery in the future when his pulmonary valve “fails entirely”, the family are taking things “day by day”.

“We were told to say our goodbyes and leave the room…we experienced the darkest five hours of our lives waiting to get a phone call to find out if our son was dead or alive,” Joe, who works in commercial property, told PA Real Life.

“From a selfish perspective, it definitely made me re-align what was important, everything else bled into irrelevance.

“We never thought this would be our first experience being parents… it’s an experience that’s going to stay with us for the rest of our lives, for better or for worse.”

Billy was born four weeks prematurely at Harrogate Hospital via an emergency C-section on October 30 2023, weighing just four pounds and eight ounces.

He was not breathing and doctors initially thought he had a lung issue, so he was rushed into an incubator for around seven hours while medical staff tried to establish the problem.

Supported by the Embrace team, a specialist transport service for critically ill infants and children in Yorkshire and the Humber, Billy and Joe were transferred to Leeds Children’s Hospital, with Charlotte following on a few hours later.

Billy was diagnosed with pulmonary atresia with an intact ventricular septum – a very serious form of congenital heart condition causing a lack of oxygenated blood to pump around the body.

“Because he was so small, it was obvious what operation was needed but we had to play a waiting game to get him up to size,” Joe said.

On November 2023, Billy was able to have his first open-heart surgery which saw a stent fitted into his pulmonary artery to help keep the valve open.

“When we were on the ward and the doctor was explaining what he had done, the stent dislodged itself and made it’s way to Billy’s lung,” Joe said.

Billy then started to “crash” and Joe and Charlotte were told to say their “goodbyes” and leave the room.

“When they started performing CPR at that time, it was pretty devastating for Charlotte and I,” he said, adding they experienced “a hell of a lot of emotion” while waiting to hear the results of the operation.

“The call came through and it’s a phone call you don’t really want to answer,” Joe said.

Fortunately, the operation was a success which Joe said was an “incredible feeling”.

He added Billy’s chest was “so swollen” from the operation the doctors were not able to close his rib cage properly for a few days.

“They had a patch over his chest but if you were to remove the dressing, you would be able to see his lungs and heart, everything just beating away,” Joe said.

The family spent Billy’s first Christmas recovering in hospital while knowing he would need a second open-heart surgery in the near future as he would soon outgrow the plastic valve placed in his chest.

“You’ve probably got about six months to a year before you outgrow it,” Joe explained.

Joe and Charlotte were able to take Billy home for the first time on January 10 2024 but in June, their son had difficulty breathing so they travelled to Leeds Children’s Hospital once again.

On June 18, Billy had his second open-heart surgery to replace the plastic valve with his own tissue, although it was “not any easier the second time around” for his parents.

While Billy was being cared for, Joe and Charlotte were supported by The Sick Children’s Trust who were able to give them a place to stay free of charge located less than a minute from the hospital in Eckersley House – one of the charity’s “Homes from Home”.

“It was phenomenal to have that there,” Joe said, adding they stayed for four months around Billy’s first operation and one month for his second.

“If that phone rings in the middle of the night, which you dread every single night, you’re a 30-second run away from getting back on the ward.”

Joe said Billy is doing “well” at the moment and he now requires six-monthly checkups.

“He seems to be very strong-willed which is amazing to see and which is very characteristic of having that fight he needed to have in the first year of his life,” Joe said.

Billy will need another open-heart surgery as his pulmonary artery will “fail entirely” at some point in this life, but it is unclear when at this stage.

“It might be when he’s 10 or 15, if we’re lucky it will be in his 20s or 30s – there’s a lot of unknowns, we’re just going to take it day by day,” he said.

To find out more about The Sick Children’s Trust, visit: sickchildrenstrust.org