The faces of young TBI
A young health professional’s perspectives on caring for a young person with traumatic brain injury.
(Names and locations changed)
A few weeks ago, the Australian news circuit featured extensive commentary about a young man who has randomly been hit on an evening out. He died, and the subsequent conviction of the offender has caused much debate. As a professional working in rehabilitation, this article is about those young men and women who survive the initial incident, who survive the emergency room, who survive acute care, who survive surgery and who wake up. It is also about their families. It is also a little bit about how it feels to work in this field, for the first time.
Here are a number of scenarios. As you continue to read, note that traumatic brain injury (TBI) results from an external force to the brain causing transient or permanent neurological dysfunction.
- Matt argues with his girlfriend after a night out. In an angry state, he gets in the car, is halfway home when he loses control of the steering wheel and hits a telegraph pole. He’s in a coma for a while. He survives.
- Liam is out with friends on a night out on the town. There is an altercation outside a pub and he is punched in the face, he falls and the posterior section of his skull hits the curb causing massive trauma. He survives.
- Oliver got his license six weeks ago. It is his ‘birthday eve’. He has had a few drinks and realises he cannot drive. He does the right thing and calls for someone to take him home in the early hours of the morning. No one is available to pick him up. He decides to drive himself. Driving home, he hits a tree head on. Single car accident. He dies on the scene. The ambulance officers revive him. That is their job. He survives.
- Jamie loves horse polo. During a game, he falls off the horse and his head is hit. That was 10 years ago. He survived.
- Chris is 18. He is fit, a surfer and starting his post high school education. He is just driving home. No drink. No drugs. Not speeding. He has an accident. The neurological injury is significant. He survives.
It is not a coincidence that the above real-life scenarios involve young men. In Australia, approximately 150 people are admitted to hospital with TBI (per 100,000 population wide; Khan, Baguley & Cameron, 2003). The incidence of TBI is higher for males (Male: Female ratio 3-4: 1). The peak incident age group is 15-35 years (Khan, Baguley & Cameron, 2003). Researchers attribute this demographic to a tendency in the age group to engage in higher risk activities. As an allied health professional, these statistics reflect exactly what I see day to day working in my first TBI unit.
Most severe TBI occurs due to motor vehicle trauma (approximately 2/3rds of moderate/severe TBI’s; Khan, Baguley & Cameron, 2003). Attributive causes following motor accidents are falls and assaults. There are approximately 3000 assault related hospital admissions for traumatic brain injury (Khan, Baguley & Cameron, 2003). Alcohol is associated with up to half of all TBI cases.
In Australia, the overall car accident fatality rate has dropped, secondary to a number of factors including safer car design, airbags, driver education campaigns, random breath tests, and speed limits. Contributing also to the reduction in fatalities is more effective critical care techniques. More people are surviving injuries that previously would have been fatal. At this point we encroach on a difficult question: If you survive an injury that would have, only a few years ago, killed you, what sort of quality of life will you have? The challenges of TBI rehabilitation are not resolved by the improvements in critical care. If anything, the challenges are greater (Khan, Baguley & Cameron, 2003).
This question became even more personal for me when I had the mother of 18 year old Oliver sobbing in my office, asking “Why didn’t they just let him die when he died?” You hear many things in a TBI ward – things that come from the deep emotional crevasses of the mind that many of us would not have traversed just yet. Empathy is impossible. Sympathy feels useless. In my relatively limited experience, as a young allied health professional, all I can do is my job.
The young men and women who survive severe traumatic brain injury have varying lengths of rehabilitation time. The outcomes of rehabilitation also vary depending on the nature, location and size of the injury. Producing a global outcome measure post TBI is difficult. We set achievable (but optimistic) goals, find research to figure out how we can achieve those goals and keep ‘plugging away’. Our aim is to maximise quality of life and function. This can be a hard thing when many body functions (e.g., swallow mechanism, speech, movement, sight) are affected.
With severe traumatic brain injury, care is 24 hour and rehabilitation is ideally, when medical stability allows, intensive. So-called ‘slow stream rehabilitation’ can last for 1-3 years, followed by years of home or community based care. Aside from the anguish to the family, the cost is also economical. The cost of TBI per year in Australia is estimated to be $8.6 billion (Access Economics, 2009).
This is traumatic brain injury broadly. As a speech pathologist, I look at just one aspect of rehabilitation, but must understand all the other aspects to maximise clinical outcomes. Severe traumatic brain injury rehabilitation is a team effort. One mother once asked me, “How do people not know that this can happen?” What she meant was, “Why are the results of TBI not part of a broader education for youth and teens?”
So what does TBI rehab look like?
I am going to outline two patients that I worked with while at the unit. I consider these two as somewhat ‘representative opposites’ – as in, they represent the extreme ends of the scale of function post TBI.
Oliver: I was the sole SP at the unit when Oliver was considered for admission and was subsequently admitted. This was my first time conducting an admission. Because of the long-term nature of the admissions to the unit as well as the limited bed numbers (another issue for another day), my existing patients had pre-dated my arrival and were already in a regular routine for rehab. Significantly also, they were all at least 6 months post injury. Oliver was just 2 months post injury and the medical team were still working to stabilise his ‘storming’. Storming, or ‘sympathetic storming’, occurs in 15-33% of patients with severe traumatic brain injury (Lemke, 2007). In an effort to reduce the workload of the brain post injury, patients are often intubated and sedated. As a result, an exaggerated stress response can occur resulting in fever, posturing, hypertension and tachycardia. This can occur from 24 hours post injury to weeks after (Lemke, 2007). While the cause of storming is not exactly known, latest research indicates that this increased activity or response is part of the recovery from severe traumatic brain injury. Witnessed firsthand, for the first time, I will be honest and say it was a little distressing. It also makes rehabilitation very difficult.
When I met Oliver, he was lying on his back. Eyes closed, asleep. When he woke, it was just that, he awoke. He was covered in sweat and the bed clothes were also wet from the sweat. There was no voluntary movement and his body regularly hyper extended in chorea-like movements, with muscles appearing to stretch out and hold tight for long periods of time. During joint sessions, the physio’s and OT’s would often support a limb or help him ‘stretch’ out a muscle. The strength of the involuntary rigidity surprised me. At times, it was like trying to unscrew a bolt by hand – not much movement at all. I will not comment much more on his movement and muscle capacity (as it is out of my field), other than to demonstrate how it affected SP rehab.
There were no outward manifestations of Oliver recognising where he was or what was happening. This of course, did not mean he did not know. His eyes would track an object to a certain point across his visual field, but this was inconsistent. He would blink often and his ‘awake’ time was limited in the first few weeks. He would often just ‘nod off’.
In terms of communication rehabilitation, our aim was to establish a reliable way for Oliver to communicate. The occupational therapist had identified that he appeared to have some voluntary movement in his right hand. We hoped that this could be an avenue for him to communicate with us – thumb up for ‘yes’ and down movement for ‘no’. We developed a set of 10 basic, concrete ‘yes/no’ questions that we would ask him every day to examine consistency and accuracy. This takes time. Every movement appears to be a huge effort. Sometimes I would start to see the thumb move and then his whole body would tense, as if trying to isolate that one small movement is too much load on his system. Sometimes we get 3 or 4 accurate and immediate responses, other days we get nothing. Things get a little complicated when Oliver’s storming continues and the rigidity in the muscles intensifies. Next trial is eye blinking. The jury is still out on whether Oliver’s eye blinking is deliberate or passive.
The music therapist is brilliant and she and I work together to add a new element to therapy. Oliver loved certain types of music and we asked his mother if she could bring in his iPod. She did, and from it, we could gather a playlist for Oliver. We then carefully watch his responses when listening to his most-played songs. It is a little excruciating for us (I would like to tell you his top 3 songs, but that probably would be giving too much information), but it does seem to calm him down. We use the music to practice his somewhat reliable thumb up/down movements. Knowing the answer beforehand helps us to establish reliability. As expected, communication rehabilitation will be a long road with uncertain outcomes. One day at a time. Whenever I hear Oliver’s number one song on the radio, without fail, I think of him.
As speech pathologists, we also work to rehabilitate swallowing function. Because of Oliver’s reduced state of alertness and obvious physical limitations, he had not taken food or fluid orally since his accident. We had observed a few spontaneous saliva swallows but this was the exception and not the norm. Apart from a potentially impaired swallow function, his positioning was a real problem. We never feed someone lying down, and at this stage, Oliver had not been moved into a sitting position. When the physio’s felt that it was suitable to move him from lying to sitting, it was a four person job: someone to support his feet (his legs were in casts), someone to support his head, someone to roll the lower torso and someone to support his arms (which were also in casts).
Once sitting, we were able to see that Oliver’s saliva control was not that good. His girlfriend came to visit a couple of times and, full credit to her as a 17 year old girl whose life has just taken a massive curveball, she would sit beside him and dab his mouth with a cloth to minimize saliva falling out of his mouth. I’m not sure how often she visited or still visits, but I was impressed that at least initially, she was there to help.
Swallowing rehab can be a tricky thing at the best of times. In this instance, we had a patient who is unable to communicate reliably, whose level of alertness fluctuates significantly and who is not even managing his own saliva secretions. It is a careful balancing act between getting stimulation and re-teaching motor patterns early on, and ensuring that his chest is not compromised. The last thing Oliver (or any rehab patient) needs is an aspiration pneumonia (chest infection or pneumonia due to the transference of bacteria in food/fluid that enters the lungs as a result of difficulty swallowing – known as Dysphagia). We started with simply monitoring saliva swallows. Gradually, as he settled in his new wheelchair and his positioning improved, we were able to trial basic taste stimulation, i.e., not introducing food or fluid, but a sweet or sour flavoured swab applied to specific areas of the mouth to trigger a swallow reflex. Sweet did not do much for Oliver, but the sour tastes triggered a primal chewing motion and delayed, but present swallow reflex. This was not consistent, but it was there, and therefore there was hope that with time and ongoing rehab he would be able to take food orally. In the meantime, a percutaneous endoscopic gastrostomy provides Oliver with his nutritional needs.
Quality of life is vital TBI long term planning. If someone is able to establish oral intake, it can go a long way to providing pleasure and a measure of independence.
I want to write here that when I left the unit, Oliver was making leap and bounds in rehab. The reality is he wasn’t. Small gains, but severe TBI rehab really only works in small gains. One step forward, sometimes two steps back.
Chris: When I met Chris, he shook my hand. Chris had been in rehab for about a year. He was in control of an electric wheelchair and was working with the psychologist to improve his reliability in showing up on time and know what he had on that day.
I recently watched an interview with Kevin Pearce, a young American snowboarding high-flyer. Kevin had sustained a massive brain injury after a fall in the pipe in Park City, Utah. While his recovery had been slow, he had regained a lot of function. His difficulties were hidden, his eyesight had been affected and his executive functions (higher cognitive functions) were impaired. The reporter noted that Kevin had been 45 minutes late to the interview, to which Kevin apologised, saying that he knew someone had told him that he had the interview but that he had just forgotten. Chris was similar. While his motor function was still impaired, he had regained a measure of independence – he could put peanut butter on his toast, pour milk, and feed himself his Weet-bix. He was on the treadmill (3 person assist) trying to get his gait and stability under control. Chris’s difficulties were similar to Kevin’s. Memory, reasoning, judgement, organisation and inhibitions were affected. These ‘silent’ impairments are the ones that can be devastating. Chris still had the same expectations for his life as he had prior to the accident, and had difficulty reasoning that he was not able to do the things he had once done.
Chris’s communication had made huge improvements. On first entering the unit, his speech was largely unintelligible. Words and sentences ‘collapsed’ into each other, rendering his speech fast with minimal clear articulation. Months of work later, when I first met Chris, I could understand everything he said. His speech was still not as it had been; it was slow, deliberate and of a deeper tone, but he could verbally communicate his needs, wants and opinions. He was one of the only patients in the rehab ward who could converse with ease. We continued to work with Chris to improve his speech clarity and additionally we worked on building his conversation skills.
Chris was later discharged home with ongoing in-house care. He has been able to re-connect socially via community rehab groups.
A few days ago, I saw a repeat of the SBS program Insight. The topic was assault related traumatic brain injuries– particularly alcohol related assaults. Some TBI’s are simply accidents. Some are a direct consequence of poor decisions by the person, or by another person. Either way, it is tragic. If you are interested in the relationship between assault related TBI’s and alcohol, the program is worth a look.
One broader aspect of the program however, was the emphasis on the impact on families. As I mentioned before, what I say here is purely my interpretation of someone else’s experience, rather than my own. It’s probably one of the harder parts of my job (across TBI, stroke rehab, voice rehab and early childhood development), is attempting to give professional counsel and support to those who are trying to be a support themselves.
I have heard that ‘a mother (or father) is only ever as happy as her unhappiest child’. From what I have seen in my professional experience, a life changing injury experienced physically and neurologically by one person is also experienced emotionally by many people (Ponsford, 2012); mothers, fathers, brothers, sisters, children, spouses, partners and friends. There is always hope in rehabilitation, but some injuries are life-long and the grieving period that the families go through is not just for the person themselves. It may sound a little selfish, but I imagine that at some stage, there is also grief for the new burdens (I use the word burden in the sense that no one would willing choose this to happen) placed upon a family. Time, finances, social, education, relationships can all be affected. I have met quite a few family members, and I have to remind myself that everyone of them is taking this in the best way they know how, and they are all at different stages of grieving.
Here are a couple of perspectives from parents and friends:
- (Referring to assault related TBI’s) “You see these guys on the news, you’ll hear about an assault or the stabbing and …then 30 seconds later it’s out of your mind. You don’t get to see the kids in the hospital rooms, the families, the pain, the mum’s that don’t want to leave the hospital to leave the bedside. You don’t get to see how it affects the little brothers and the little sisters… how it affects the families.” SBS Insight participant.
- “If he can’t do anything else with his life, make an example of him. Show other kids what can happen.”
- “We’re just happy to have Steven Version 2”
- “I sit in the car outside the hospital for an hour trying to get myself to come in. Some day’s I just can’t.”
- “It’ll be alright. We’ll just take it as it comes”
- “I want to be here with him, but then I really don’t”
- “Why did this happen?”
But what strikes me as significant, is that most, if not all these families, keep showing up (Rees, 2012).
The above reflections merely brush the surface of a discussion that needs to continue. With increased awareness, increasing research and public policies that reflect both preventative and rehabilitative needs, health care can move forward in a positive direction. This positive direction needs to orientate around the needs of people with the traumatic brain injury as well as their families.
SBS Insight Program: www.sbs.com.au/insight, Kevin Pearce’s story: www.youtube.com, Kevin Pearce interview: www.youtube.com Carers Australia: www.carersaustralia.com.au, In Psych publication regarding TBI: www.psychology.org.au, Brain Injury Association of Australia: www.biansw.org.au
Access Economics. (2009). The economic cost of spinal cord injury and traumatic brain injury in Australia. Access online on 3/12/13 from www.tac.vic.gov.au/ Khan, R., Baguley, I.J. & Cameron, I.D. (2003). Rehabilitation after traumatic brain injury. Medical Journal of Australia, 178(6), 290-295. Lemke, D.M. (2007). Sympathetic storming after severe traumatic brain injury. Critical Care Nurse, 27(1), 130-137. Ponsford, J. (2012). Understanding and managing traumatic brain injury. InPysch, retrieved on 20/11/2013 from www.psychology.org.au. Rees, R. (2012) Resilience of people with traumatic brain injury and their carers. InPysch, retrieved on 20/11/2013 from www.psychology.org.au