The Defining Truth: Kids with Brain Injuries Are Being Left Behind.
Don't Let a Brain Injury Put You in a Box – Discover the Power of Hope and Healing!
If you're young and living with a Traumatic Brain Injury (TBI), or if you're a caregiver helping someone on this journey chances are you've heard it all. The pronouncements, the limitations, the gentle (or not-so-gentle) nudges pushing you into a pre-defined "box."
I know I have heard it all. If I should have taken serious even 10% of what was being said to my family I would absolutely be in this box. Well intentioned but all left me to assume:
‘‘You dont walk again’’
‘‘You should forget about your academic dreams’’
‘‘The slope of your life will be downhill and negative moving forward, adjust to it’’
To be clear! None of that happened. I am here in my current shape because of not listening to that. If it didnt happen to me, was I lucky? Did god bless me? Something else?
For the majority these aren't just phrases; they're statements from medical professionals. Those who we rely so hard on for information during extremely disstressing times.
But here's the thing about boxes: they're meant to be broken!
The Hidden Challenge: Brain Injuries in Kids and Teens Need More Support and Other Care!
Figure Estimated frequency of hospital discharges and deaths in cases of traumatic brain injury by age group in Europe (The Lancet Neurology Commissions, 2022)
The frequency of hospital admissions for TBI is highest in older people (aged ≥65 years), followed by children and adolescents. And here's a crucial point: because young people have so much life ahead of them, they're more likely to live with the long-term effects of TBI. This means understanding and supporting them is even more important!
Approximately 345 children or adolescents per 100 000 are admitted to hospitals in the EU per year, and about 3 per 100 000 die as a consequence of a TBI. (The Lancet Neurology Commissions, 2022). In the US, the incidence of TBI-related emergency department visits, hospitalizations, and deaths for US children is roughly 1000/100,000 pediatric population (Taylor et all, 2017).
To put this into perspective, let's compare it to childhood cancer. The incidence of childhood cancers in the US is about 350 out of every 100,000 children, with around 11,000 new diagnoses and 1,100 deaths annually for kids under 15 (National Foundation for Cancer Research, 2022).
These numbers show us that TBI of kids is far more common in our society than many realize, and we need to treat it with the seriousness it deserves. But are we really doing enough?
The Unique Struggles of Young TBI Survivors
So you are a kid. Your brain is still developing to its full capacitative state and then TBI happens. TBI can happen to anyone but the younger populations are actually worse off.
Because your brain is still maturing, and because a life-changing event like TBI can be incredibly hard to understand, the impact can feel overwhelming and the consequent fall into the unkown is extremely deep.
Where we find ourselves most often in, is what is better known as the ‘Medical Industrial Complex’. Where we as traumatized young individuals have a future of long term life dependancy on the healthcare settings our environment presents us
It is a significant challenge, unlike in some other chronic conditions, TBI often lacks a standardized, integrated pathway for comprehensive long-term diagnosis and care following acute injury. This can leave survivors and their families navigating a fragmented system, struggling to find appropriate, specialized support for evolving cognitive, emotional, and physical needs that may persist for years. (Cifu et al., 2013; CDC, 2021).
In addition, research shows that children and young people (aged 5–18 years) have a significantly increased risk of mental health issues, psychiatric hospitalisation, and self-harm after TBI compared with those after an orthopedic injury (Ledoux A-A, et all. 2022).
There's a strong argument that a lack of dedicated research funding and overall investment in these crucial long-term care pathways contributes to these gaps. This highlights a pressing need for more focus on improving quality of life and outcomes long after the first stages of recovery (Langlois et al., 2006; Dams-O'Connor et al., 2019).
Areas for Further Research and Action: Shaping a Brighter Future
This critical area needs more attention and action! Here are some key areas where further research and focused effort can make a huge difference for young TBI survivors and their families:
Empowering Families and Caregivers of Young TBI Patients: Families and caregivers are the true heroes in a young person's journey with TBI. They provide constant support, advocate for their loved ones, and often navigate complex healthcare systems. Research is vital to develop programs and resources that empower these incredible individuals.
Integrated, Long-Term Care Models: We need to research and develop standardized, accessible, and integrated care pathways for pediatric and young adult TBI survivors. This includes seamless transitions from acute care to rehabilitation and ongoing community-based support. How can we create a "roadmap" for recovery that guides families every step of the way?
Mental Health Interventions Tailored for TBI: Given the increased risk of mental health challenges, more research is needed on effective psychological and psychiatric interventions specifically designed for young people with TBI. This includes understanding the unique neurological basis of these challenges and developing targeted therapies.
Neuroplasticity and Recovery: Exploring the incredible neuroplasticity of the developing brain in the context of TBI offers immense potential. Research into specific interventions (e.g., targeted cognitive therapies, virtual reality rehabilitation, transcranial magnetic stimulation) that can harness this plasticity to optimize recovery and long-term functional outcomes is crucial.
Caregiver Support and Education: The role of caregivers is immense. Research into effective educational programs and support systems for families of young TBI survivors can significantly improve long-term outcomes for the survivor and reduce caregiver burden. How can we empower caregivers with the knowledge and resources they need to thrive?
Technology-Assisted Rehabilitation: Investigating the use of innovative technologies (e.g., wearable sensors for monitoring, AI-powered cognitive training apps, telerehabilitation platforms) to provide personalized, accessible, and engaging rehabilitation for young TBI survivors, especially in underserved areas.
Longitudinal Studies: More long-term studies following pediatric and young adult TBI survivors for decades are essential to fully understand the evolving impact of TBI on development, education, employment, social relationships, and overall quality of life. This data is critical for shaping future policies and interventions.
Biomarkers for Prognosis and Treatment Response: Research into biomarkers (e.g., blood tests, imaging markers) that can help predict recovery trajectories and identify which treatments are most likely to be effective for individual young TBI survivors. This could lead to more personalized medicine approaches.
Having suffered severe TBI myself, personal sources that helped me to become the best version of myself:
Follow my personal survivors story by clicking here, having suffered severe TBI and the remarkable life story that brought me to where I am today.
Follow the Brain Recovery & Maintenance Protocol by clicking here, which is regularly updated with practical tips for long term brain recovery/maintenance care.
Follow MedPulse on TBI Rehab as it provides unique perspectives from TBI survivors and their stories.
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Disclaimer
Everything written here is based on my own account, if not otherwise stated. I am not a physician, nor do I have a medical degree. I was patient with them and by following certain and consciously not following other advice from them I found my way to become the best version of myself. I am a TBI survivor and I am sharing my experiences. From my own perspective I know what works and what not. My own perspective is always well researched and I only use products and services that have worked for me. Having said that, TBI survivorship is dependent on the individual going through TBI and therefore each case is different. One size - Fits all solutions don't exist in this space.
References
Cifu, D. X., & Cooper, B. C. (2013). Traumatic Brain Injury. Physical Medicine and Rehabilitation Clinics of North America, 24(4), xv–xvi.
Centers for Disease Control and Prevention (CDC). (2021). Traumatic Brain Injury (TBI) & Concussion. Retrieved from https://www.cdc.gov/traumaticbraininjury/index.html
Dams-O'Connor, K., Spielman, L. A., & Singh, R. (2019). Rehabilitation after traumatic brain injury. Continuum: Lifelong Learning in Neurology, 25(6), 1629–1652.
The Lancet Neurology Commissions. (2022). The Lancet Neurology Commission on traumatic brain injury. The Lancet Neurology, 21(4), 382–442.
Langlois, J. A., Rutland-Brown, W., & Thomas, K. E. (2006). Traumatic Brain Injury in the United States: Emergency Department Visits, Hospitalizations, and Deaths, 2002. Centers for Disease Control and Prevention.
Ledoux A-A, et al. (2022). Psychiatric hospitalisation, and self-harm after TBI compared with those after an orthopedic injury. JAMA Network Open, 5(9), e2231268.
National Foundation for Cancer Research. (2022). Childhood Cancer Statistics. Retrieved from https://www.nfcr.org/cancer-statistics/childhood-cancer-statistics/
Taylor, C. A., et al. (2017). Traumatic Brain Injury-Related Emergency Department Visits, Hospitalizations, and Deaths - United States, 2007-2013. MMWR Surveillance Summaries, 66(9), 1–16.