Five-year-old Kayden Griffiths seems just like any other active little boy, playing with his toys on the floor and giggling mischievously.
But, as his mum Lisa knows only too well, his resilient nature hides a multitude of conditions which could threaten his life in the blink of an eye.
Kayden was born at 26 weeks in the back of an ambulance near Oxford, hundreds of miles away from home, weighing a tiny 2lb 4oz.
“He was the size of a Coca-Cola bottle and his skin was so transparent,” said Lisa.
“There was no resuscitation unit on board, no incubator. When we got to the hospital he was rushed straight to special care. It was terrifying.”
Starved of oxygen, with a bleed on the brain and numerous complications, Kayden had his first life-saving operation at just seven days old. Just days later, the tiny baby was back in theatre for more surgery.
It was the beginning of a traumatic few years for mum and baby. They spent the next two-and-a-half years in three different hospitals, miles away from their home in Merthyr Tydfil. Lisa, who also has two older daughters, aged 11 and 14 at the time, was forced to live apart from her family as Kayden was being treated in hospital.
Then doctors told Lisa the unthinkable – there was nothing more they could do for her little boy.
“They told me after his second birthday he wouldn’t be here now, but look at him, said Lisa.
“He’s cheeky, he’s so intelligent it shocks you and he’s determined. No matter what life throws at him he just gets on with it. It doesn’t faze him. He’s a miracle. So we don’t look into the future, we take it one day at a time.”
Now living at home in Merthyr Tydfil, life has been difficult for Lisa, who had to give up her painting and decorating business to care for her son.
“Kayden needs 24-hour care. His hydrocephalus is the big concern because it can kill him in an hour – if he deteriorates I need to get him straight into hospital, to the neurological unit in Cardiff,” she said.
“It’s been so hard – financially, emotionally, everything you could think of. My life stopped the day I had Kayden. I’m his nurse 24/7. But he’s also made a positive change because he’s made me look at life so differently. Before I had him, I was so selfish – brand new car, new clothes – and now everything revolves around Kayden.”
Hospital staff put the family in touch with Tŷ Hafan, but after being Kayden’s main carer for so long, it was difficult for Lisa to hand over the reins at first.
“When I first went there I was horrified because I didn’t understand why a nurse was following me everywhere. I didn’t realise what was involved – they’re there to look after your child while you have a break!” laughed Lisa.
“Kayden doesn’t sleep because he gets night terrors. One night he had been up all night and I said to the nurses ‘I need to go to bed, I’m not going to be any good for him today’ and they took over which was fantastic.
“Now I know I’m safe to leave Kayden with them. When I walk in there now I can say ‘will you watch him? I’m going for a shower’ or ‘I’m going out shopping’ and I can put my faith in them. And Kayden’s happy there, he loves playtime and messy play and meeting new people. He clicked with on little boy and that made my day – I was crying because he played football with him; he can’t even walk but he was on the floor kicking the football and thoroughly enjoyed it. It was absolutely amazing – he didn’t even want to come home.
“All the staff are fabulous; I enjoy being around them, you can even have a chat with them, they’re like your friends. I’d tell someone going through the same thing not to be afraid to ask for help. I was and that’s why it got so bad, because I wasn’t coping and I blanked it and went into denial I suppose.
“But you have to be open to anything they offer you because Tŷ Hafan is amazing.”
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