Mum of brave Ripponden boy urges support for Children's Heart Surgery Fund

Thousands of people will wear red on Friday to raise money for Children’s Heart Surgery Fund (CHSF).

Ripponden mum Bobbie-Jay Johnson is one of the local families pledging to help CHSF support the service which saved her son’s life.

Caleb, who is now 13, needed 12-hour open heart surgery at just two-days-old.

He was treated at the Leeds Congenital Heart Unit, the region’s specialist centre for the treatment of cardiac defects, stationed within the Leeds Children’s Hospital.

Bobbie-Jay said the diagnosis was given just moments after she gave birth in Halifax.

“A consultant came in, he explained to us that Caleb had transposition of the great arteries, which was not conducive to life,” said Bobbie-Jay.

One in 30,000 babies have this condition.

"I was obviously unable to walk having just given birth an hour ago, so was wheeled in to see him, his tiny little body wired up in an incubator,” Bobbie-Jay said.

"The snow was thick and heavy that day, the Embrace team came and took him to LGI for a balloon septostimy. This was 3pm. We were stuck in Halifax, unable to get to him with a phone call to say the procedure hadn’t worked.

"An ambulance came for us at midnight to take us to him, by that point he was very grey. They allowed me a cuddle.”

Caleb was supposed to gain strength for two weeks before his open heart surgery, but two days in, the family was told it was needed urgently.

"My tiny two-day old baby needed a 12-hour operation,” Bobbie-Jay said. “We were told by the consultant that there was a chance of fatality or severe brain damage, yet not consenting would result in his loss.

"After signing consent I collapsed. It was a blur. The next day Caleb went in for his op.”

Bobbie-Jay said after an agonising wait, she was told the surgery had gone well and that she was were able to see him in the intensive care unit.

"He was swollen, covered in tubes, his chest was still open with a waffle bandage covering it,” she recalled.

"I didn’t leave his side. I was able to change his socks, clean him with a little sponge and sing to him.

"My solace was in expressing milk for him, for his feeding tube. I became obsessed with every beep and all his stats constantly.

“After just 12 days they switched off the machine breathing for him to see if he could breathe unaided. Seeing his tiny little chest rise was the most wonderful feeling I’ve ever had.

"He was breathing! We were home just two weeks after his birth. He was tube fed for a short while as he couldn’t latch on, due to the tube through his nose causing him to struggle.

"He has constant check ups, heart scans and tests. It went from six monthly, to yearly and now two yearly.

"He’s now 13 years old, healthy, happy and plays for a football team! He had a leaky valve for a few years which has now self-healed.

"I owe my life to those surgeons and wonderful nurses. Especially the nurse liaisons, who kept me as sane as possible when I felt like I couldn’t even breathe.”

CHSF support the Leeds Congenital Heart Unit with life-saving medical equipment and ward facilities, emotional, financial and practical support for affected families and essential staff training and research into the disease. Their support also covers 19 regional clinics, including one at the Calderdale Royal.

Around one in 125 babies are born with a heart defect in the UK, and over 17,000 patients of all ages are looked after by the region’s congenital cardiac network in a typical year.

Bobbie-Jay added: “While Caleb was being treated in Leeds, we were given a room in Eckersley House. A place to wash and rest -a base. It was a welcome solace to have somewhere to sleep, directly next to my baby.

"Also, my toddler was able to come and stay so I could see him too.

"CHSF also made Caleb feel part of a community and part of a family, by providing Christmas parties, where he could see people like himself and we could meet parents who had been through similar.

"I shall be heavily donating to them this year, I’ve always fundraised as much as possible, but now I’m able to do more. I most certainly will be doing as they are such an important part of the journey, for heart warriors and their parents.”

Anyone who wants to get involved and donate to CHSF can do so by texting CHSFWRD (plus any amount up to £20) to 70085.

You can register for the event at the CHSF website and receive a free online pack that contains ideas and tips for fundraising.