Fish out of Water: Caring for a Child with a TBI
By Susan Marsh
Can you give us a brief overview of why you feel it is important to share your experiences, both personally and as a caregiver, with head injuries?
Our family, has had to deal with the hardships of maneuvering through the uncharted territories of caring for a child that has been deemed to have acquired catastrophic brain injury to her frontal lobe. I can tell you that it is hell. While we are in the midst of a lawsuit, which in itself is difficult, it has afforded us the opportunity to have "cutting edge" treatment providers. Now by saying this in no way means that the treatments are cutting edge but it does put us in a situation other may not have the ability to pay for.
My daughter sustained a life altering catastrophic brain injury at 15 years old and has not been the same since. The vehicle that she was a passenger in was traveling at excess speed, when it struck an articulated bus. Her head stuck one of two places the B-pillar or the side window with an impact speed of roughly 75 km/h. Scenario one has my daughter’s head struck the B-pillar at a determined the g-force would of 628 g. Second scenario, is if she had she struck window glass the g-force impact would be 765 g. It has been 9 years and within those years, I am learning what directions to follow and ones to avoid. There is no book on how to care for someone that sustains these types of injuries. At the hospital, knowing that on scene she was unconscious, choking on her blood, convulsing and combative, in which they had to sedate her. After doing scans to ensure she didn’t break anything, tell us that her nose and orbital bones were broken and after they sewed up her head with 14 stitches, they sent us home with a pamphlet that talk about minor concussions. Told me to look out for headaches, and vomiting. We got 10 feet from her hospital bed, when she started to vomit. They saw us a half and hour more and sent us on our way. Little did we know what the real extent of her injuries were. So from point of triage to today, we have had to follow a path not travelled.
Can you describe your experience as someone who has suffered a concussion? How did your recovery process go? Is there something you wish you would have known that would have impacted either your attitude toward your recovery or your recovery in general?
I have sustained many concussions, one from a vehicle accident which I was a passenger in and the others through sports. During my accident, the other driver hit me head on and I sustained severe whiplash which was not treated at the hospital. This injury has plagued me for 31 years.
I also played competitive basketball which I can guess I must have had minor concussions every game I played. I did have one concussion that I can distinctly recall, which knocked me out for a moment and when I came to I could not remember what happened. I saw a tunnel of lights for hours and even chipped a front tooth. Again, no hospital visit. I do have light sensitivity, irritability and migraines. I also have experienced ocular migraines in the past but for me, the light, noise sensitivity, and irritability are daily struggles I still experience.
Looking back I only wish that I would have known I had an injury and had been able to seek out help.
Can you describe how your daughter’s severe head injury impacted both her and your family?
This experience has been life altering. We were like fish out of water, not knowing what to do or what to expect. She went from sleeping 22 hours of day, to falling asleep mid eating, to forgetting words, keys, glasses etc., outlandish odd behaviour, drugs, losing ALL of her friends, police calling the house, aggressive threatening behaviour, destructive behaviour, abusive behaviour + language, walking on egg shells, suicide threats, deep deep depression, mood swings, bad actors in her life, debt etc.. the list goes on.
We have had to bail her out of situations that I never dreamed I would be in. Had to advocate for supports, school accommodation, employment situation, etc. We as a family have sustained a financial burden, family dynamics are irreparably changed, our lives are guided by the mood of our dear daughter.
But more than anything, it is hard to watch her hate herself so much; to the point that she wished she wasn’t alive because an injury that was not her fault that changed the very core of who she thought she was. To be devastated that all her friends and some family members left her when she needed them the most. It’s hard to watch your child die inside. We are always championing her, supporting her, encouraging her, advocating for her because we believe she is worth it. We see her drive to prove the world that she can do, therefore will do - her passion to persevere beyond all obstacles, her beauty, her gentleness, her resilience and all of her gifts that she possesses to be an inspiration to others.
How do things change as a caregiver of someone who has had a severe head injury? Was there anything you were not prepared for or support systems that you wish you could have had access to?
The day she got injured my life was a game changer for my role as just mother. I am her confidant, her punching bag, her advocate, her champion, her cheerleader, her manager, her accountant, her safe place, etc., the list goes on.
There are limited supports in place for caregivers in situations like this. Things as simple as helping them stay healthy (mind/body), be a fully functional mother/brother/father/wife etc., guiding them through to the proper channels for tools to help their injured family member, and advocacy for the health of their loved one are not so obviously available.
The big things I wished that I was prepared for:
More info at the hospital about head injury so I could oppose the fast discharge
A social worker (or someone) assigned at the hospital to educate me in next steps, follow up, and be there as a resource
As a mother, I was shell shocked, afraid and hyper vigilant
Since the accident was a result of a car accident I would have wanted someone to walk me through our rights as victims:
o Do I need to contact a lawyer? What to ask the police, doctors, etc.? What my rights were to allow me to stay home with my daughter? How to go through the process of completing a disability form, ODSP?
o Insurance claims – what to do, how to do it, what to ask , what benefits do you really have and how to get them?
o Support for caregivers and a 24h emergency response resource. Having a child with this disability makes it difficult to maintain household responsibilities, while ensuring that all treatments, appointments etc. are met. And getting a call from your daughter, screaming and incoherent is frightening and something I was not prepared for. To know you have someone available to you when you experience these outbursts or even when your child is just acting a bit differently would have been a resource I would have benefitted from.
Legal capacity: This needs to be better defined and allow caregivers the rights to overturn decisions. Just because she can understand the value of a dollar and understands that bills need to be paid DOES NOT mean that she has capacity to act on her knowledge.
If there was one piece of advice you could offer to other caregivers, family members, or friends of those with a head injury, what would it be?
This one is hard one to answer. I would say find the best doctor you can. Research, get a good lawyer. Keep good notes, keep advocating, and be sure to try and take care of yourself mentally, physically and emotionally.
Parting words: My focus
While I am grateful for the parents like Rowan’s who have opened up the dialogue on preventive protocols for secondary concussions which was needed in a big way, I think the word concussion and the way we currently think about these injuries can be deceiving. My feeling is that there is a perception that a concussion is something that one can get over and move on and with no lasting effects. While this is true for a large subset of the population, this is in no way the reality for all of us. Yes, my daughter suffered a TBI, which is not the same as a concussion/mTBI (mild Traumatic Brain Injury); however, I myself sustained concussions and still suffer from symptoms of PCS years later.
Additionally, there is not a lot of dialogue around how the injury, whether minor or major, affects family and friends of the injured. While we spend so much time talking about the injury itself, we forget that those family and friends are suddenly left with the burden of heavy lifting by supporting, advocating, directing, managing, caring, and mentoring, above their own needs, because the system doesn’t understand the impact that brain injury has on them.
I struggled with every aspect of this journey, from applying for and being denied a disability tax benefit (multiple times), initial care/diagnosis at the time of injury and understanding that what my daughter sustained was not a concussion, but instead a TBI (Traumatic Brain Injury), keeping myself and my family afloat when we clearly had no idea what our lives had become, and navigating through the health care system, lawsuit, etc.
I have learned over the 9+ years that treatment protocols are inconsistent or regulated. The research being done to study the effects of injury on the brain are being explored from different bases. Money that is being funded for brain research is being allocated to duplicated research agencies and the findings are not being shared. The best way to describe it is that each agency works independently from one other. While preventive measure of protecting your brain and recognizing the sign of trauma through sport are very important, it is only a small part of the issue. The leading cause of traumatic brain injury in Canada are:
Motor vehicle collisions (45%)
Falls (10%)
Bicycle incidents (10%)
Sports, Assaults, other traumatic causes (10%)
Workplace Injuries (10%)
Medical conditions or diseases (10%)
Asphyxia, poisoning, other toxins (5%)
If sports only account for 10% of all brain injuries why are we spending so much time studying the effect of injury in sports? I feel it doesn’t matter how you acquired your injury, it matters what the right treatment protocols for each level of severity. We need proper supports in place until the patient no longer requires it, education, and support for the caregiver, just to name a few.