Although Jade works in medicine, she felt as lost as any other parent when her little boy, Jackson, was hospitalised due to a life-threatening brain injury.
During Jackson’s time in Bristol Children’s Hospital, the family was introduced to the neurorehabilitation team, who not only transformed Jackson’s recovery through therapy, but allowed Jade to reconnect with her son and reframe how she saw his illness.
Jade told us about Jackson’s hospital journey and how therapy became the highlight of her family’s stay in Bristol.
“Jackson was hospitalised in May 2022. It was a normal Monday morning. Jackson had only recently started walking, so he was having lots of tumbles. He had fallen at his grandparents’ house the day before. That morning, he started to throw a tantrum because I wouldn’t let him play with the hoover, so I picked him up to take him upstairs.
He was retching on the way upstairs and then vomited. I put it down to the tantrum until I laid him down to change him and found he was unresponsive. If I sat Jackson up, he would respond, but as soon as I laid him down, he was unresponsive again. I just knew in my gut that something was hugely wrong.
I called an ambulance who weren’t very concerned since they could get Jackson to respond to a stimulus, but he just wasn’t my boy! Jackson was in a strange place and he fell asleep cuddling me. He is a curious, mischievous little boy, so there is no way he would have just gone to sleep in a hospital or ambulance with all the new people and equipment around.
We were lucky to see a paediatric consultant in Swindon who took my gut feeling completely seriously. Jackson was initially treated aggressively for sepsis, but after a few hours with no change in his condition, a CT scan was ordered.
Jackson’s initial diagnosis of a bleed on the brain was in Swindon. I am a healthcare professional, so I knew then that we were in a bad place. Jackson was intubated, which actually made me sigh with relief. As long as he was ventilated, I knew he was likely to remain stable.
When Jackson was transferred to Bristol Children’s Hospital, there was a team waiting for him. He was seamlessly taken to the CT scanner and then the operating theatre, which made us feel like Jackson was in the best hands.
The diagnosis of arteriovenous malformations (abnormally formed veins and arteries in the brain) was made quickly in Bristol. His head bump at his grandparents’ house was ruled out as a cause of the haemorrhage, which was obviously reassuring for his grandparents.
The hardest day was finding out that Jackson’s condition wasn’t treatable at the time, meaning his brain could bleed again at any moment. We had been viewing Jackson’s hospitalisation as the hardest time of our life, but we took comfort in believing that it would come to an end. So, to be told that he would live with the risk of death, or a life-shattering bleed, was awful.
Through it all, Jackson didn’t miss a beat! Jackson had no grief period and didn’t seem to have any awareness that he had lost anything. As soon as he could move, he was pulling at wires and removing his feeding tube. I came in one morning to find him doing a downward dog with a drain still in his brain! He was trying to work out how to escape the cot. He’d even been helping himself to crisps from the table at 3 am.
Jade, Jackson’s mumJackson has always been a bubbly little boy, full of fun and always laughing. His response to his health shaped ours: if he could be so brave, we needed to be too.
The Grand Appeal’s family accommodation meant we could be close to Jackson while he was in hospital. I never actually returned to our home in Swindon until I walked back through the door with Jackson in my arms. I have no idea how I would have coped having to enter our home without Jackson.
There are lots of times during Jackson’s stay in hospital that stand out in my memory. It felt like there was this huge common goal of keeping our baby boy alive. One doctor performed life-saving surgery on Jackson in the middle of the night, finishing in the early hours of the morning. By 8 am the next day, the doctor was at Jackson’s bedside again.
But I felt completely adrift at this point. I had gone from being able to understand my child as only a mother does to feeling that I had no way to connect with him in his new ‘state’. I didn’t feel I could be of any use to Jackson as I wasn’t trained in this field of brain injury.
The therapy team came and showed me how to stimulate Jackson. They gave me a way I could connect with Jackson and learn to understand him again. The therapists empowered us as parents to be an active part of his recovery.
Rather than seeing the process as just Jackson having therapy once a week, they taught me how to incorporate therapy into everyday life. I naively expected therapy to be something I would ‘do’ to Jackson which, like medical care, would be in his best interests, but would be hard and stressful for both of us. I had images of exercise sheets and dull equipment that Jackson would hate. I never imagined it would become the highlight of our days while in hospital.
The therapists also allowed Jackson to have days where he didn’t progress as much. If there wasn’t ‘progress’ in weaning off drugs and ventilators, you could sense the doctors’ disappointment. I never felt that from the therapists; they were always so positive and proud of Jackson.
They taught me to advocate for him to other professionals. If Jackson wasn’t feeling it one day, we would only take him as far as he was comfortable and then try again the next day. His emotional wellbeing was as important as his physical progress.
The therapists seemed to come from an angle of ‘the sky’s the limit’, whereas I thought that once an area of the brain was damaged and that damage was visible on the scan, that was the end. Therapy would only help with ‘what was left’.
Jade, Jackson’s mumI don’t describe Jackson as having brain damage, I describe it as a brain injury, which gives that possibility of improvement. That whole way of seeing Jackson was inspired by the therapy team.
Therapy taught us to never limit what we think Jackson may achieve. There was an ever-positive attitude of ‘let’s try it and see what happens’. I truly believe that without therapy Jackson would be in a wheelchair, using a feeding tube and unable to communicate.
Dr Smallbone, one of Jackson’s doctorsJackson was also one of the first patients to be a part of the team’s new outpatient service. This meant Jackson’s medical assessments and therapy were managed by the hospital team while allowing him to enjoy as much family time at home as possible.
When we began progressing to weekend leave, we felt safe and supported as parents. Although we were keen to go home, the thought of taking our newly medically complex child home was terrifying.
The outpatient model we moved to was great for continuity as it was a gradual step down to local community teams. It continued to increase my confidence in the impact we as parents could directly have on Jackson’s ongoing recovery. The outpatient model gave us ‘normal family time’ alongside the reassurance that we’d see a professional every few days to discuss any worries we had encountered at home.
I love talking about Jackson’s story as his time in hospital feels so far away from the little boy I see today. Jackson is amazing. He has cerebral visual impairment (a problem with how his brain processes the information from his eyes) and is likely to be developmentally delayed, but he is happy, cheeky and determined.
We still live with the risk of another brain bleed occurring, but Jackson has made such a remarkable recovery that we’ve been referred to a specialist in Sheffield to explore possible treatment options.
His prognosis was so poor that we envisioned Jackson in a wheelchair, with no communication skills. Now, he walks, talks and attends mainstream nursery. He learns new skills every day. Therapy really did change Jackson’s outcome, and it changed our whole family for the better.”
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