Teenage fundraiser gets life-changing surgery

Louis Johnson, who has raised around £80,000 for 18 different charities, has a condition called pectus excavatum

A teenager whose ribcage was crushing his heart and lungs has had life-changing corrective surgery which is no longer widely available on the NHS.

Louis Johnson from Wolverhampton has pectus excavatum - otherwise known as sunken chest syndrome - a rare medical condition where the breastbone sinks into the chest.

The 17-year-old had previously been told that it was a cosmetic issue and that he had to live with it, despite it significantly impacting his ability to breathe.

Louis has now had an operation at one of only two hospitals in England to carry it out. He said it would change his life.

The teenager, who was awarded a British Empire Medal in January for raising about £80,000 for charity, said of his condition: "It affected me massively. Exercise was basically impossible.

"I could do little bits but after that I'd be absolutely exhausted and breathless."

The condition deformed the shape of his heart and prevented his lungs from expanding while exercising, he said.

Scans of Louis's chest before (left) the operation, where the breastbone is sunken, and after (right) the operation, where a metal bar has pushed the breastbone out

Louis's mother, Teresa Johnson, said doctors had tried to dismiss her concerns about her son's health.

"[Doctors said] basically I was an overprotective mom, there was nothing wrong, it's just cosmetic, he's got to live with it," Ms Johnson said.

"And it got to a stage where nobody would listen to me at all, but I carried on fighting."

Ms Johnson said her son's breathing was a lot better, four weeks after the operation.

"It's let him have his life back. Before, it was difficult, he couldn't do anything his friends do."

Teresa Johnson said: "I wish the NHS had done something sooner because of the damage it caused."

Now, the 17-year-old is on the road to recovery and is looking forward to the future.

"Before, it was limiting. I want to be a police officer and potentially it could have jeopardised that."

Louis had an operation called the Nuss procedure, which saw a metal bar inserted into his chest

Louis had the operation, known as the Nuss procedure, four weeks ago.

The surgery, was performed by thoracic surgeon Joel Dunning at The James Cook University Hospital in Middlesborough.

It involved inserting a metal bar into the 17-year-old's chest, pushing the breastbone forwards and relieving the pressure on his heart and lungs.

The surgery is not widely available on the NHS in England, only to patients with severe physiological symptoms.

Joel Dunning (right) is among the team leading a £2m pectus excavatum treatment trial

A private operation now costs between £16,000 and £25,000, according to Dr Dunning.

Heart experts at the hospital's trust, including Dr Dunning, are now leading a £2m research trial to compare the benefits of the surgery to having no treatment, with the hope it will lead to the surgery being placed back on the NHS.

Ms Johnson said: "We just want to thank Joel for fighting for us and getting Louis to have the life he deserves, we can’t thank him enough."