Having a child with complex needs is far from easy.
It’s made even tougher when you have to make the heart-wrenching decision of whether your child should undergo life-changing treatment.
Lisa and her husband Mark spent two years agonising over whether their 12-year-old son Joe should have spinal surgery at Bristol Children’s Hospital. We spoke to Lisa about her brave boy Joe and his time in hospital.
“My son Joe is special. In fact, he’s so special that he’s still technically not been diagnosed. He even took part in the ‘100,000 Genomes Project’, a study that focused on children with rare diseases by inviting them to have their genes researched. Unfortunately, Joe’s condition remains a mystery.
What we do know is that Joe has epilepsy, developmental delay, and microcephaly, which means he was born with a smaller head than usual.
Joe doesn’t eat, Joe doesn’t talk, and Joe doesn’t walk. He requires constant supervision and care but, in all honesty, I wouldn’t have him any other way.
Very early on, I knew something wasn’t right. People would say ‘he’s fine’, but my gut told me otherwise.
Joe was only 11 months old when medical staff realised the severity of his condition. My husband had taken him to our local GP. As Joe lay in his arms, he had a major seizure. People panicked. Joe needed treatment as soon as possible. They cancelled the land ambulance and waited anxiously for a helicopter to arrive.
Meanwhile, I was stuck at home. I picked up the phone and desperately rang around friends and family. I needed a lift to the hospital. I needed to be by Joe’s side.
From that day on, our lives changed forever.
He is now 12 years old. He has been in and out of hospital because when Joe gets sick he gets really sick. He definitely keeps us on our toes.
On top of everything else, Joe suffered from scoliosis. As he grew, so did the curve in his spine. It was crushing his organs. Despite being no stranger to the emergency room, deciding whether Joe should have spinal surgery wasn’t easy.
Although Joe is PEG fed, which means he has a feeding tube connected to his stomach, he also has other feeds. Joe’s scoliosis started to disrupt his feeding. Every time he drank, it would end up in his lungs. Joe would come down with lung infections, chest infections, pneumonia, all sorts…
Mark and I took two years trying to make up our mind. Should we put Joe through this? Because of his condition, doctors said he might not survive.
Seeing Joe’s joy for life gave me the answer I needed. We had to give him a chance.
While our local hospital in Exeter wanted to perform the operation, they thought the specialist spinal team at Bristol Children’s Hospital would be best.
Watching Joe being taken down for his surgery made me wobble inside. It might be a familiar feeling, but it’s never a nice one. Thankfully, he made it.
Originally, they told us Joe could be in hospital for up to six weeks. Yet in under two, he was back home with us and that’s even with a brief trip to the Paediatric Intensive Care Unit.
Joe continually amazes me. So far, his spinal surgery seems to have made such an improvement to his quality of life. I know we have Bristol Children’s Hospital to thank for that. Their love and care for Joe were clear to see throughout his time there.
It was difficult to leave Joe’s side – I felt as though I had to be there at all times. What if something happened to him? But the staff made us so comfortable and reassured. I could head back to our accommodation without worry or guilt.
I will always be so grateful for what the children’s hospital has done.
Despite Joe’s spine being straight and his feeds improving, his needs are still complex. No amount of words I put down could adequately describe our time with Joe. Life is undeniably hard, yet so rewarding.
Joe is such a happy child. He never cries. I like to think I get my strength from him. After everything we have been through together, I am so incredibly proud of him. I know every parent must say that about their child, but I really am. We’ll continue as we’ve always done – taking it day by day and making sure Joe is as happy and healthy as can be.
Support for families like ours is crucial. We work together with so many people to make sure Joe has the very best care – whether that’s carers, hospital staff, charities or friends and family. It’s a team effort. Joe’s condition might be unique, but our situation isn’t. There are other families out there caring for a child with disabilities. They need all the help and care they can get.
Even the simplest of gestures can make somebody’s life just that much easier. Surely that is a cause worth supporting?”
