A Doncaster schoolboy has revealed how he lived with a steel bar in his chest for four years – because his ribs were growing inwards.
14-year-old Edward O'Brien's chest was so badly caved in that he described it as his “sweetie bowl” but can now take a proper deep breath after having his bones realigned following an operation which saw him have a steel bar inserted behind his breastbone.
The youngster's family discovered that he was suffering from pectus excavatum by chance aged two - which affects around one in 1,000 children in the UK.
The condition is a structural deformity of the anterior thoracic wall in which the sternum and rib cage are shaped abnormally.
Edward would often cover himself up, refuse to take his t-shirt off on holiday and stand with his arms crossed during swimming lessons because he was too self-conscious of his 'sunken chest'.
The youngster then made a decision “well beyond his years” aged nine and approached his parents, Kathrine and Adam O'Brien to ask if he could undergo the dangerous op.
Surgeons at Sheffield Children's Hospital made two cuts either side of his chest to put a stainless steel bar in which was then rotated and wired into the muscle on Bonfire Night in 2014.
Edward had been warned that the 90-minute operation was one of the most painful that can be done on a child but still decided to go ahead with it.
He is now over the moon after having the bar removed a few weeks ago - just in time for Christmas.
His mum Kathrine O'Brien, 47, a passenger service agent from Doncaster, said: “When the bar was taken out Eddie told hospital staff the best thing was he is now able to take a deep breath.
“I didn’t really realise how restrictive it was for him before because it wasn’t an issue we had gone to the hospital with, it was purely how Edward felt about himself.
“On medical grounds, the only thing they said to us was, without the operation it would get worse over time.
“Knowing there was something inside Eddie that had to be removed did hang over us. It’s not something you forget about for four years, it has been an ongoing concern.”
Edward added: "It feels like there is more space in my chest and I have to do a lot less heavy breathing. I feel much happier that’s it’s out.
“I’m going skiing with school next year. Last time I went I had to be really careful, now I can just go and if I fall it’s not going to be a problem.
“Looking back, to say I did the research and made the decision at such a young age is pretty cool and I’m glad I did it.”
As a baby, Edward's mother did not notice anything out of the ordinary about her son’s chest.
But during a hospital visit when Edward was two, a consultant called a student doctor into the room and said ‘this is a spectacular example of pectus excavatum’.
“It shocked us because that was the first time we had heard that term and it wasn’t what we were there for,” added Kathrine, who has two other children.
“The consultant at the time said it would be a horrific operation to correct the condition and he recommended that we just accept Eddie the way he is.
"The operation he refers to is one done many years ago and isn't one they often perform anymore. We, therefore, decided to just leave it be.”
Although a healthy, active youngster, Edward was getting breathless after exercise and became more and more self-conscious about his chest.
“He came to us one day and said ‘I want something done about my chest’,” added Kathrine.
“It was never something we broached him with, he came to us about it and it just snowballed from there.
“He had been doing some research about it and knew about the operation he could have. He educated us.
“He had been googling videos about the operation from the US. We took him very seriously then. He knew exactly what he wanted.
“Thankfully, when we saw the doctor at Sheffield he said straight away ‘I believe even though you are so young, you completely understand what the operation entails’.
“When you are faced with having to sign a consent form making that decision, it would have been very hard for us to make that call ourselves.
“But it was taken out of our hands because Edward was so sure, there wasn’t an ounce of doubt in his mind. It was all he wanted.
Sean Marven, the Consultant Paediatric Surgeon who treated Edward, said: "Sheffield Children's is one of the few specialist centres in England for chest wall reconstruction surgery.
“Patients come to us from all over the country to treat conditions like pectus excavatum which affects around one in 1,000 children.
“The condition can make children feel very self-conscious. We're pleased with Edward's recovery and that he is happy with the outcome."