17 Mar

Ethan Newman's Story: Pectus Carinatum Treatment

Ethan Newman's Story: Pectus Carinatum Treatment Ethan Newman's Story: Pectus Carinatum Treatment
The story 
Ethan was a fourteen-year-old boy who enjoyed school, spending time with his family and on the weekend going bouldering at his local climbing centre. However one day when getting dressed he noticed that the wall of his chest seemed to be sticking out unusually, which initially concerned him but he left it for a few days thinking it might go away. But a couple of weeks later he began to worry again, and researched online what it could be in case it was something serious. 

The search results immediately scared him, as the only information he came across which matched his symptoms was about an invasive surgery carried out by the NHS to correct the condition. Ethan was left feeling worried and concerned he had something seriously wrong with him. 

When Ethan’s mum Claire, noticed his chest, she booked a GP appointment to see what help was available. Claire had also taken to searching the condition, and was also very, if not more so, disturbed by the lack of information available to the public on the condition. 

During this time Ethan became more conscious about his chest, particularly when getting changed for PE at school as his friends had begun to notice it. When asked what it was he felt ashamed, as he didn’t know exactly, and he began to avoid activities such as swimming or going to the beach with his family. 

The solution 
When he saw the GP Ethan was diagnosed with Pectus Carinatum (also known as ‘Pigeon Chest’), and referred on to see a thoracic surgeon for diagnosis and discuss treatment options. He was told that he was eligible for the chest compression brace treatment and was referred to Kate at the Seacroft Hospital Brace Clinic in Leeds. 

Ethan and his Mum were immediately put at ease by their specialist orthotist Kate, whose positivity and confidence in the treatment was a complete contrast to the lack of information they had found online. Keen to get started Ethan was fitted with his compression brace – an oval device with chest and back pads, designed to place pressure on the point of protrusion and gradually push the chest back into place. Unfortunately, the first couple of weeks were extremely uncomfortable for Ethan, as the asymmetric ‘point’ of his chest was particularly prominent and was rubbing against the brace. But after a few alterations and a softer layer of foam added to the brace pads, Ethan was adamant to start the treatment again and this time be successful. 

After two months Kate was thrilled with Ethan’s progress, as once his chest had loosened up and the initial ‘point’ flattened out slightly, the treatment began to work at an incredible rate. This motivated Ethan even more as he could feel a difference himself right away, and he stuck to the timing plan set out by Kate to the dot. One of his proudest moments during the process was when he slept in the brace the whole night through - as he was initially convinced he would not be able to. 
The turning point 
After nearly a year of inspiring dedication and determination Ethan’s chest is almost completely flat - and he has been able to gradually cut down the hours of wearing it. He now feels confident when going out with his friends, and doesn’t shy away from activities like swimming; he even found that doing his GCSE’s was not disturbed by the brace as his chest wasn’t worrying him anymore. 

The bracing treatment had a significant impact not only on Ethan’s physical health, but also his mental health too, as he now realises the detrimental impact it was having on his life before – “The thing I am looking forward to most is just feeling normal. I can now go out in public with confidence, wearing normal shirts and jumpers.” 
One of the biggest turning points for Ethan was being able to go back to the climbing wall again after nearly a year off, as before he was worried about injuring his chest and the brace getting in the way. However, now he has more confidence than ever, and has found he can do more advanced climbing manoeuvres as his ribs don’t feel as though they are ‘moving’ as much and are more stable. 

Returning back to every day activities and the hobbies he loves was the main aim for Ethan and his family, and he has achieved it through sheer courage and determination when it comes to the treatment process. His mum Claire is particularly proud: “Looking at a picture from a year ago, he’s smiling but it isn’t a happy, genuine smile. So compared to now, I can really see the difference the treatment has had on him.” 

During his treatment Ethan was offered the opportunity to speak at the National BAPO Conference, where he bravely spoke about his treatment experience in front of a room full of clinicians, who were fascinated and moved by his story and came away feeling enlightened about the condition. 

Now, as he nears the end of his treatment Ethan is keen to spread more awareness about Pectus Carinatum and campaign for the bracing treatment to be more readily available, whilst helping others who may be going through the same thing. Claire has also been taking action to help families whose children have the condition, through a private Facebook group of parents and patients from all over the world who swap stories and support one another. 

Ethan’s advice to anyone about to begin treatment is simple: “At first it will be hard and difficult, but just persevere and it will get easier. Get on with your everyday life and it will be worth it. Just think – this treatment is only a small fraction of the rest of your life.” 

Ethan's Case Study