“Our lives could have been extremely different” – Charles’ Story
Charles’ two children Imogen and Jasper were borne before they were ready for the world. Like 1 in 10 of all premature babies, they are now living with permanent and life-changing disabilities. Here, Charles shares his family’s story – a reminder of why it’s so crucial to keep babies in the womb, where they belong, for longer.
“We noticed she had stopped laughing and taking an interest in her surroundings.”
But when she was around six months old, we noticed she had stopped laughing and taking an interest in her surroundings. We knew something was very wrong when she started making strange movements, so we took her to A&E, where we were told that she had a catastrophic and potentially fatal form of epilepsy called West Syndrome. Imogen was subsequently diagnosed with cerebral palsy, and had to undergo major surgery on her hips and femur bones as they had not formed properly.
We were excited but understandably nervous when, 5 years later, we found out my wife was pregnant again. Imogen’s brother Jasper was born at 28 weeks. After two months on intensive care, we were given the devastating news that he had suffered severe brain damage during birth. He has since been diagnosed with severe cerebral palsy.
“Neither of my children can stand, let alone walk.”
Neither of my children can stand, let alone walk and my son is unable to speak. We have six pieces of wheeled equipment for each child. Both children have a night-vision camera in their room, so we can spot any seizures. We had an annexe built downstairs for Imogen to live in, and we’ve had the ceilings reinforced so that we can install electric hoists when she gets too heavy to carry. We’ve been grappling with the question of where Jasper is going to live when we can no longer carry him up the stairs.
We had no more room in our house to make anywhere suitable for my son, so took the very difficult decision to move to the Black Forest in Germany, which is where my wife comes from originally. We moved there because we could get a bigger house for less money as well as having more family support for the children. My parents are elderly and no longer able to help with the physical demands of lifting and moving the children. We now live in a house that’s been adapted for disabled living and are all able to live together on the ground floor, which has given us a better quality of life. Quite an extreme action to our very difficult life circumstances!
Our children are a blessing and such a joy, and both have a very cheeky nature – probably a great personality trait to have for the years ahead. But it would be untrue to say that life has not been extremely tough for us all. If Imogen and Jasper had been born just a few weeks – even a few days – later, our lives could have been extremely different.
This is why I am so passionate about supporting Borne. By sharing my story, I hope to raise awareness and spread the word about the vital research that they do to find better ways to prevent the potentially devastating outcomes that can arise from premature birth.