The summer of 2013 is one I will never forget. As usual, my family went away to soak up the sun and relax, but this holiday turned out to be quite something else.
My son, Niam, was 14 at the time and your typical teenage lad, though he had been experiencing a few social difficulties I put it down to the usual teenage stresses. But when we were on holiday I noticed something different about him. His chest looked quite strange; it protruded noticeably to the point that on occasions I would see people staring at him.
These reactions and Niam’s stress were horrible for me to witness, so I took it upon myself to do some internet research. Typing in his physical symptoms and the way he’d been acting emotionally, a condition popped up called Pectus Carinatum.
Pectus Carinatum is a condition where the chest protrudes due to an overgrowth of cartilage. I discovered that it’s most common in young boys who are going through puberty, as Niam was at the time. Although pectus deformities are common with about 1 in 400 people having one, this one was a rarer form.
After what was quite a worrying journey home I had a chat with my friend, a GP, who advised me to take Niam to the doctors. From there we were referred to the local paediatric services in St Albans who, seeing that Niam had a more serious version of the condition, referred us to specialists at Great Ormond Street Hospital in London. There we were told Niam would inevitably need surgery.
We were back and forth to GOSH for several scans, check-ups, X-Rays and psychological sessions before Niam had to go in for surgery. In the meantime, we were told to get Niam’s fitness levels up, as the stronger he was physically at the time of the surgery, the quicker his recovery would be.
Motivation was the key, and to make sure Niam knew he wasn’t alone, I began training and improving my fitness too, taking on 10k runs. It was nothing like the challenge my son had to face, but at least this way we were in it together and I could give something back.
When the surgery day came in August 2014, I knew Niam would be on the Intensive Care Unit following his operation and would need close monitoring by his consultants. We live over an hour away, but leaving his side just wasn’t an option. This was when I was invited to stay at The Sick Children’s Trust’s Rainbow House located just a few moments away from Niam’s ward at GOSH.
Through my tears, I found my way to Rainbow House and was greeted by the most amazing person, Kim. I’ll never forget her. She gave me the biggest hug when I needed it the most. She was so very kind and genuine and showed me around the house, but not before giving me a cuppa!
The house was so much more than I expected. I was given my own room, equipped with a vanity unit and wardrobe. But what was so brilliant was that the house has a kitchen where you can store your shopping and cook your own meals or just grab a cup of tea and a biscuit – being a single parent, having the facility to do this was all the more important.
What’s more is that my friends and family were also welcome to visit me, which meant the world to me as my eldest son visited after work for dinner and we would then head to the ward feeling prepared and strong.
At the house there was a direct line to the ward, and I remember one night Niam couldn’t sleep so I was able to nip round and play cards with him until he drifted off. I loved the ward being so near, as it meant I could get a few healthy breaks and get some sleep too at the house. It was a bit like being at home.
Niam’s operation was successful and he spent much less time in hospital than expected, partly due to his determination, and also all the hard work he’d put in with his fitness beforehand.
Niam is now studying for his GCSE’s is just like any other teenager, having fun with friends. We are due to return to GOSH in April and I will definitely be popping back to Rainbow House to say thanks to Kim.
I`m so grateful to The Sick Children’s Trust for providing me with accommodation, it really helped make an awful life experience a little better.
Thank you for reading my tale.