I break my boy’s bones
But he doesn’t let that stop him!
Discovering there was something wrong with my precious baby at my 20-week scan was devastating. ‘His arms and legs are short. He’s growing very slowly,’ doctors told me. Rushed to a specialist, I felt so frightened. ‘It’s a form of dwarfism,’ the specialist explained, but he couldn’t give an exact diagnosis. The worst was still to come. ‘Your baby probably won’t survive after birth,’ I was told. Doctors feared his chest wall wouldn’t be strong enough to hold his lungs. I was told to plan for a funeral, choose a coffin. But I refused.
My baby was still kicking. It was me and my son against the world.
Kaden was born in February 2012 by Caesarean, three weeks early. At just 4lb 1oz he was rushed to Intensive Care. I didn’t get to see my tiny baby boy until a day later. His legs were bowed and pointing the wrong way, but he was so cute. Three weeks later, doctors gave us Kaden’s official diagnosis. .
It was osteogenesis imperfecta (OI) – a brittle-bone condition so rare, only one in 15,000 babies are born with it.
‘He’s doing well right now,’ doctors reassured me.
But they kept preparing me for the future.
‘He’ll never walk, and is unlikely to survive beyond 5 years old,’ I was told.
They warned me his bones would break very easily…
Kaden was 5 weeks old and still in hospital when he had his first broken bone. A nurse had been changing his shirt when, suddenly, his left arm stopped moving. Amazingly, he didn’t scream out in pain.
An X-ray confirmed doctors’ fears. Kaden’s arm was broken. Then realisation hit me. [ My baby is so fragile, I have to be strong for us both.
Once home, Kaden wanted to do all the things doctors said he wouldn’t be able to – moving his head, sitting up. He kept breaking bones, but was such a happy little baby.
The older he got, though, the
more he cried w when h he had a break. I’ I’d give him painkilling i me medicine and splint the limb straightaway, like I’d been shown in hospital.
But little Kaden was so active, I worried. Jumping off the sofa onto his bum could break bones in his spine. Even a cough or sneeze could cause a fracture.
He was prone to pneumonia because his immune system was so weak, too. But the most heartbreaking thing was when I’d accidentally cause a break by doing something as simple as lifting him up.
‘Mummy’s so sorry, but we’ll take care of it,’ I’d say with a smile and a kiss.
But when he went off to play, I’d cry with guilt.
Kaden always knew when he’d broken a bone.
‘I broke my leg, Mummy,’ he’d tell me, sobbing.
In December 2014, Kaden, then 2, had rods fitted in his femur and both tibias to help strengthen his legs.
By then, I had a new partner, Benjamin, 28. Caring and supportive, he knew I was worried when Kaden started nursery in August this year.
But we spoke to the staff, and Kaden explained his condition to his classmates.
‘You’ve got to be careful with me,’ he said.
He’s such a confident boy, and is a huge superhero fan. He loves Batman and Superman.
‘I’m fighting the bad guys,’ he’ll say.
Kaden’s 5 now, and has had over 40 breaks. Doctors want him to wear a body brace, but he hates it.
‘If his spine curvature gets worse, he’ll need a permanent brace when he’s older,’ we’ve been warned.
Though Kaden uses a wheelchair at school, thanks to physio, he can use a walker at home. He has amazing upper-body strength, and also uses his arms to scoot around on his bum. He’s small but mighty, fragile but so strong.
His doctors have a different view from mine of what lies ahead for Kaden. They think he’ll only live until he’s 23 or 24, whereas I think his future will be long and bright.
‘You’ll grow up and be whatever you want to be,’ I say.
‘I want to be in the movies,’ he insists. And why not? To me, Kaden’s already a superstar!
Even a cough or a sneeze could cause a fracture