Life is strange isn’t it; from one day to the next you don’t know what will happen. Sometimes it seems that no matter how hard we plan and try to think ahead, life just has a way of throwing you a curved ball that changes your life forever.
Saturday 28th August 2010, was a sunny bank holiday weekend and Callum my 16 year old son had gone on a climbing trip with his dad to Highcliff Nab in Guisborough, a local beauty spot. Sadly within half an hour of them arriving – Callum had fallen 70 feet from the top of the cliff – landing on his head.
26 people went to his aid from The Great North Air Ambulance; Cleveland Search and Rescue Team, the North East Ambulance Service and Cleveland Police. After an initial assessment of Callums injuries by the air ambulance doctor, he directed 16 people who were all working on different parts of Callums badly injured body to treat his multiple injuries. It took them an hour to stabilise Callum before they could carry him back up to the top of the cliff where the air ambulance was waiting to air lift him to James Cook University Hospital.
Doctors described Callums injuries as ‘the worst they had ever seen’ and they told us that the complexity and severity of his injuries were considered to be ‘unsurvivable’. He had sustained severe head and facial fractures, significant injuries to his brain, a base skull fracture, broken neck vertebrae, a severed brachial artery; the top of the humerus bone (upper arm) and his wrist were broken, and effectively his arm had been severed internally; he had broken ribs front and back; his liver was badly lacerated and he had sustained two collapsed lungs.
Callum spent 12 hours in theatre where 5 surgeons work all night trying to repair the severed artery and repair his severed arm. During the operation he was given 20 units of blood as they fought to keep him alive and stop him from bleeding to death. We received hourly updates from the surgical team but we were told to prepare ourselves and expect the worst.
We stayed at the hospital; waiting. At one point when they wanted to give up, we begged them not to let him die because if they didn’t give up on Callum he wouldn’t give up on them. Then they told us that if Callum did survive the injuries to his brain were so significant he would have ‘no quality of life’. Either way, his life – and ours – would never be the same again.
When the surgeons eventually managed to stabilise Callum and stem the bleeding, he was admitted to the Paediatric Intensive Care Unit (PICU). The doctors told us that it was too early to determine if the surgery had been successful and reminded us that they considered the nature and complexity of Callums injuries to be unsurvivable. We were advised to take everything hour-by-hour because his condition was so serious, unpredictable and unstable. They told me they couldn’t make him better; their role was nothing more than to make sure he wasn’t in any pain whilst he was in an induced coma. And that situation continued for days.
It turned out that the surgery had been successful and they surgeons had managed to restore the blood circulation to his arm. We were told it would probably be a useless arm even if he survived.
By day nine we were told that Callum couldn’t stay on life support any longer. He had pneumonia and the life support machine wasn’t helping. However they then dropped another bomb shell when they told us that because Callum has sustained a base skull fracture there had also probably been damage to the brain stem. This is the stem-like portion of the brain connecting the cerebral hemispheres with the spinal cord. This area of the brain is responsible for breathing, heart rate and movement of the muscles, alertness and consciousness; which meant that Callum would be unable to sustain life independently and the likelihood was that he would die. We were devastated to think that we had lived hour to hour for over a week praying and hoping that Callum would survive, only to be told that he was going to die now anyway. But as his parents we couldn’t accept this.
So as they were reducing the medications that were keeping him in an induced coma and reducing his dependence on the life support machine, we started talking to Callum to try to bring him back from his unconscious lifeless state. We knew that this was it – make or break time. If he didn’t breathe he would die – so our main aim was to try to get him to breathe. And eventually – after what seemed like an eternity – the life support machine indicated that he had started to breath. As we all watched and as time ticked by the strength and rate of his breathing very slowly increased. Despite the brain stem damage – he was defying all the odds.
Later that day – Callum was taken off the life support machine but over the course of a few hours his breathing became extremely laboured due to the pneumonia and his heart rate increased dramatically. So he was put back onto the life support machine where he remained for another few days. But the main thing was that we knew he could breathe independently. He wasn’t conscious but he could breathe.
Over the next few days the nursing staff encouraged us to touch Callum and they involved us in his daily care routines, like washing him and brushing his teeth. They also encouraged me to clean his hands and under his finger nails which were still engrained with dirt from where he had tried to save himself from falling over the edge of the cliff. So – much to my husband’s disdain – I started to give Callum a daily manicure and a gentle massage to his hands.
Then one day, he moved the ends of his fingers ever so slightly. What was so significant was that this was on the arm that had been severed. The arm that doctors thought would be ‘useless’. We figured that if Callum could move the ends of his fingers then the signals were able to travel from his brain, down his arm and to his fingers to make them react. That was a great day. Another tiny step towards recovery.
Callum remained unconscious until day 16 when he eventually opened his eyes. But then came the next bombshell. He couldn’t see, hear, move, speak or swallow. He couldn’t do anything. He just lay there totally unresponsive. The doctors told us that this was likely to be the Callum we had gotten back. But when we looked into our sons eyes we both felt that he was in there – somewhere – we just needed to find a way to connect with him again.
The only odd thing that happened was one of his fingers start twitching; which the neurologists thought were signs of a seizure. We didn’t care though because our son was still with us and no matter how his accident had affected him, we would care for him and make sure he had the best life possible.
As days passed, very slowly Callum became more aware of his surroundings and we were able to start to try interact with him. Three days later Callum was able to very slightly squeeze our hands in response to yes and no questions but he still couldn’t speak. He had also started moving his legs and arms; which we knew meant he wasn’t paralysed.
Then on day 18, I asked the nurses if we could wash Callums hair because it was still filthy from the dirt and debris from his accident. It was not an easy task because of his broken neck vertebrae and open skull fractures and it took three of us to manage. Me to hold his head; one nurse to wash his hair and one to pour on the water and make sure it drained away through the tray that was placed underneath his head.
But Callum was terrified. I could see it in his face. He didn’t understand what was going on. So as I was holding his head, I was talking to him and telling him what was going on. I was telling him how much I loved him and how well he was doing. Then I asked him if he loved me. And ever so slightly he nodded his head. And our ‘conversation’ continued as I held his head in my hands; I felt so ‘connected’ with him.
Then I asked him to say ‘Mum’. I watched him watching my lips as I kept repeating the word ‘Mum’, just as you would when trying to teach a baby to speak. And as I watched in amazement, he started to move his lips and try to form the word. I kept encouraging him and saying Mum over and over again. Then clear as day he said ‘Mum’! Callum could now talk.
Over the next few days Callums talking increased and although he could only speak in a whisper, his use of vocabulary and language was increasing. That was also when he told me that he could only see things close up but not very far away. And he could only see bright colours but could not focus on anything clearly. In fact his vision was so poor that he was still effectively blind.
However after a few more days he managed to string together a sixteen word sentence – which was quite an achievement. Even though it was not very complimentary about the skills of the plastics nurse who was changing the dressings to his arm which hurt him a lot at the time and his language was not the politest it could have been – everyone was ecstatic that he was talking!
By Day 36 Callum was well enough to be discharged from the Paediatric Intensive Care Unit but his doctors wanted to send him to a specialist neuro-rehabilitation centre 35 miles away. We refused because we felt that it was too far away. We also understood how important the family was in the neuro-rehabilitation process and Callum would be too far away from everyone for us to play an active role in his recovery and rehabilitation. We were also extremely concerned that he would become institutionalised as a long term inpatient. So Callum was eventually transferred to a neuro-rehabilitation ward within James Cook University Hospital. Unfortunately what we didn’t realise at that time was how low the expectations were set by the NHS for people recovering from an acquired brain injury.
By now we had completed our own research about brain injuries and we had clear expectations about what was needed to help Callum to recover. After all there is sufficient information about the brain and how it functions, as well as research and evidence about the complex needs of people post brain injury and what works. We also learned that with the right help and support, people can make significant neurological improvements and this can continue for many years post-injury.
Sadly across the UK the NHS priority for in-patient rehabilitation, whether for children or adults, is: “to improve basic self-care skills; including bathing, dressing and feeding.” Well to us that’s fine if you break a limb. Or have a spinal injury. Or have a heart attack. Or even if you have an organ transplant. But if your brain is injured – that is something completely different because your brain is ‘you’. It is who you are and it makes everything function and work properly.
So once a child or young person can wash, dress and feed themselves and are considered ‘medically stable’, they are discharged from hospital. Sometimes they are provided with very limited access to some very disjointed community based services none of which are tailored to meet the ongoing complex needs of brain-injured children and young people – they just don’t exist! So families are often just left to get on with it – as we were – and children and young people in particular are just expected to resume a normal life.
Sadly what many families don’t know at the point of discharge is that across the whole of the UK:
a) there is very little help and support for children and young people to assist their ongoing neurological recovery and
b) acquired brain injury isn’t widely understood across the general population
To this day – Brain injury remains the ‘hidden’ disability.
Disappointed at the lack of ambition and any structured Rehabilitation Plan for Callum we asked for him to be discharged to home. Using my project management skills, I developed a rehabilitation programme for Callum that addressed all of his needs. And we were starting to see significant improvements. But we realised that we were spending the majority of our time on the neuro-rehabilitation ward ensuring Callum was neurologically stimulated rather than just being left in bed alone for the majority of the time with nothing to do. After all, he only received a maximum of 60 minutes of physiotherapy a day and 30- 60 minutes of occupational therapy that mainly focused on washing, dressing and feeding.
Although the physiotherapists got Callum walking again before he was discharged, we felt none of the OT therapies he was receiving were frequent enough to make a real difference. So I stopped working so I could care for my son and work on his neurological recovery and rehabilitation. My husband was granted some compassionate leave so that he could also help – which we were really grateful for. Then we brought Callum home and the hard work began.
Uniquely my project management background helped me to apply those skills to develop a measurable and structured Neuro-rehab Plan that was tailored to Callums very specific needs. The outcome was that Callum made rapid progress in his neurological recovery and rehabilitation – the speed of which shocked his doctors. So unique was our approach that other community health professionals started asking for copies of my Rehabilitation Plan because – in their words – “they had not seen anything like it before”.
Almost five years on Callum is still making significant improvements and has successfully completed a BTEC Extended Diploma in Health and Care at Middlesbrough College. He gained the highest grade possible; Triple Distinction Star (which equates to 420 UCAS points). He has recently received an unconditional offer to undertake a BSc degree in Sports Science and Injury Rehabilitation at York St John University. He was also offered a place on the BSc in Physiotherapy, which he accepted. He commences this autumn and we will keep you posted as to how he is getting on.
NOTE FROM THE CHAIR.
In 2012 the NHS ‘estimated’ that approximately 40,000 children and young people across the UK present at A&E with a traumatic brain injury every year. This does not include those with encephalitis; meningitis; brain tumour and other neurological issues.
Yet in 21st century Great Britain, they are not actively supported to recover from what can be – a life changing event – or even supported to regain any of their lost skills or pre-accident abilities; which are the foundations of their future health and economic well-being. Basically they are left to fend for themselves with a hidden disability in a very harsh and unsupportive world. Is it any wonder that in many cases – they don’t succeed? Too many do not have a positive life outcome post injury. And that is what we are trying to change.
So with Callum as our inspiration, Matrix Neurological has been created as a result of personal experience and from a clearly identified need. We are a new charity that aims to provide the practical help and support children and young people need to recover – as we did with Callum. We have worked with paediatric Consultants to help shape our services and we have a Paediatric Consultant on our Board.
We will also pro-actively support their families and work with parents so they don’t face the enormous challenges ahead on their own.
As a charity we have come an awful long way in a very short time. Three months after we were created – we achieved our charity status and became a registered charity. Three months further on – we now have a fully equipped office. As a charity we are aiming higher because we believe an acquired brain injury is life-changing, not life ending.
Finally we have received so much help and support from people who believe in us – at times this has been pretty over-whelming.
We can now start to develop some innovative neuro-rehabilitation services for children and young people and their families. Without our funders and supporters – we would not have achieved so much so quickly. On behalf of the Trustees of Matrix Neurological we wish to say a massive THANK YOU to you all!
Founder and Chair
Aiming Higher:Achieving More
"Often families don't have the financial capability to access services. We need to rethink how we delivery neuro-rehab services to children and young people"
"NHS clinicians struggle with what intervention to priorities in pediatric neuro-rehabilitation due to limited clinical time and the complexity of needs. Children, clinicians, parents and schools all have different neuro-rehabilitation priorities"
"Too often children and young people with ABI are discharged from hospital without specialist brain support that they and their families need to overcome lifelong challenges"
"Our 10 year study proves that family-led home-based neuro-rehab interventions deliver the best outcomes for children and young people"
"New parenting support intervention showed how parenting style is related to executive dysfunction in children and young people post brain injury. With support parents cope better so the child has a better recovery"
"Thousands of children and young people living in the UK today without the help and support that can make a huge difference to their lives"
"When different organisations assess different aspects of a child's neuro-rehabilitation needs, everyone looks at things from a different perspective and highlight needs and conflicting priorities"
"We are medical practitioners. The real experts are the parents. Over the last 35 years they have taught me everything I know"
"Rehabilitation interventions can lead to positive outcomes for children and their families if delivered in the familiar home environment and applied to everyday situations"
"Parent-supported interventions following pediatric ABI bring reductions to the cost to society"