“AFTER the first operation his heart gave out."

It's every parent's worst nightmare to be told their newborn baby needs life-saving surgery.

But this is what happened to Hayley Studley, 28, from Melrosegate in Tang Hall in York when her baby boy, Luca, was delivered at York Hospital on February 29, 2020.

The leap year baby was diagnosed with Oesophageal Atresia (OA) and Tracheo-Oesophageal Fistula (TOF) which is a rare congenital condition of the wind pipe and the tube that connects the mouth and stomach. It affects one in every 3,500 babies.

Hayley said: "Lucas was transported to LGI and because of Covid restriction we had to travel separately. He had to go in to intensive care on day two of his life. He had one operation and then the next day he had another.

"I was told later that after the first operation his heart did give out, but it restored itself and they decided then to hold off doing the other operation until the next day.

"It was so awful. Me and my partner, now husband, Shaun, got very upset.

"I was on my own in a hospital ward when we should have been celebrating. It was just dreadful."

The operations Luca needed were to connect his oesophagus and trachea correctly.

And Hayley and Shaun have chosen to speak out now because February 28- March 6 is TOF awareness week and Hayley's throwing a fundraiser to help fund research.

Hayley, a legal assistant at RG Law in Piccadilly, said: "The fact that my son is to celebrate his birthday at the start of the week raising awareness of his condition inspired me to organise a charity event.

"What started off as a cake sale for my colleagues at RG Law, soon turned into something bigger.

"The support I received from my work was amazing and so I realised I needed to look further than a bake sale to make the company event successful.

"I reached out the the local parents on Mumbler on Facebook and the response I have received was amazing.

"Many Local businesses and individuals have responded and I have more prizes than I know what to do with.

"It's evolved into something more with; a raffle, an office Harry Potter quiz (thanks to a kind donation from the local Harry Potter shop) and a name the Teddy game.

"The event is set to take place in my workplace on the March 1 and I can’t wait to see how much money we raise for this cause that is super close to my heart.

"I’m so grateful to our local community and the local businesses. I’m also humbled by the support from RG Law, who are also supporting me and and the event by quoting the charity at the bottom of their quotation letters and donating £1 of their legal fees per client throughout March."

Hayley and Shaun, 27, who works at The Punch Bowl in Blossom Street, also have a four-year-old daughter, Lucy and the couple celebrated their wedding in October.

Hayley said Luca is a happy little boy, but he'll need operations throughout his childhood to stretch the scar tissue which doesn't grow as fast as the rest of his skin.