Monday, February 05, 2007

A Family's Journey

Bear with me. Long post — at least by my usual standards. It concerns a subject near and dear to my heart. Last month Trish wrote about the use of helmets in sports and other activities.

While reading it I thought, “Hey, I once wrote an article about this. Now that I’m blogging, what a wonderful way to share my message.”

Many readers of my blog are parents with children of various ages. As parents, we all want to protect our children as best we can — for as long as we can. My article is a story of our family’s experience — a story of how we failed to protect our son due to our lack of knowledge and what we ultimately learned. It is both a warning and a plea to others not to repeat our mistake.

The article is “dated” but still relevant. I presented it at the Toronto ABI (Acquired Brain Injury) Network Conference in 2002. ("Travelling Together: Navigating the System to Achieve Success after Brain Injury.")

The article led to further media coverage — an interview with The Globe and Mail (not available on-line without paying a fee) and a request from a neurosurgeon to do another interview for The Toronto Sun.

I hope some of you take the time to read it in its entirety. If just three people take this message to heart and pass it along to three others, who in turn pass it along — well, do the math. Six? Nine? More? Those numbers are worth it to me.

Post-Concussion Syndrome — A Family Journey

January 2002

It is 9:40 a.m. My seventeen year old son is sleeping upstairs. In two hours, I will wake him. When I do, I will watch his eyes open, shut, open again and squint as he turns to the light. If the light still bothers his eyes, if that feeling of grogginess still remains, I will then watch him close his eyes, turn his head into the pillow and mumble, “I want to be better…I want to be normal.”
My son (a hockey player) recently sustained his third concussion in six months. Like other parents of young athletes who have suffered similar injuries, we were told after his first concussion that he could resume play once all symptoms from the concussion had disappeared. We were given the same advice after the second concussion — with the added proviso that the chances of his sustaining yet another concussion could be greater, that it could take less force to cause such injury.
At that point in time I should have started my own investigation. What we weren’t told was that the symptoms from a third concussion could be more severe, more numerous and last longer. Recovery time could be days, weeks or months. It is Day 10 of my son’s post-concussion syndrome. I am now aware of the risks regarding the cumulative effects from multiple concussions. And belatedly, I have done my research — doggedly questioned (pestered?) the professionals and searched the Internet. I am now a quasi-expert (albeit a reluctant one) concerning the symptoms, consequences and thorough examination required to diagnose and categorize a concussion.
Had I possessed this knowledge before, could I have forbidden my son’s return to play? Would my word have carried weight in the face of certain doctors and health care professionals telling him that he could resume play once “recovered” from the second concussion? I suspect not and the question is now moot. The third concussion occurred.
I now have answers to questions I never considered asking six months ago. Damaged neurons in the brain do not regenerate. My son’s youth and the brain’s miraculous ability to compensate for damage sustain me as to his ultimate recovery.
Equally disconcerting, I have learned there are questions regarding concussions for which there are no definitive answers. “How long is the brain vulnerable following a concussion?” “Is it ever safe for an athlete who has suffered multiple concussions to resume sports?” Return to play guidelines differ significantly amongst various sports and medical associations. We will err on the side of caution.
While hockey is over for my son for the 2001-2002 season, he speaks of playing next September — not in the body-checking, bashing, fisticuffs league of Single “A” play but in the “gentler” world of House League play. Still, “inadvertent” body contact and falls occur, even in this league. The ice is hard. The boards are hard. We don’t discuss this stressful topic in depth right now. We will wait until he is better.
The fact that some NHL players return to play after “recovering” from concussions encourages my son but horrifies me. No career and no amount of money are worth risking the quality of your life. Which concussion will ultimately cause permanent damage? Again, there is no definitive answer. If not totally recovered from a concussion (and who knows what minute, unobservable damage might still exist within the brain even after months of rest?) athletes who resume sports risk suffering from Second Impact Syndrome. This syndrome can cause serious harm or even death.
Contrary to the belief of some athletes and coaches, a concussion is not an injury to “shrug off.” It is not manly or macho to get back on the ice or the field after sustaining a blow to the head or chin — it is dangerous. (And no, my son did not resume play after his fall to the ice. He was physically and mentally incapable of doing so.)
Even the slightest symptom (i.e. momentary dizziness) warrants removing a player from the game for further investigation. The brain has been injured and unlike a broken bone, the extent of the damage is not immediately apparent or visible. In fact, further symptoms may take hours to appear.
Coaches (and parents) should be conservative in assessing the extent of a head injury. That seemingly minor blow to the head may just be a player’s first concussion. Always keep in mind — multiple concussions may cause cumulative damage. While wearing protective equipment (a well-fitted helmet and a mouth guard) may reduce the risk and severity of head injury in certain sports, a concussion can still occur. Also keep in mind that each individual is different. While some athletes may apparently recover from the first, second and even third concussion in a short period of time, not all will. The one who doesn’t may be your son or daughter.
Your child’s health is your responsibility. Do your own research — after the first concussion. Do not wait until the answers you seek are the ones you don’t want to hear.
Fortunately, health professionals now recognize that there is a dearth of knowledge regarding long-term consequences from multiple concussions. Studies are being conducted. My son is taking part in such a study (Brain Behaviour Correlations in Patients with Mild Traumatic Brain Injury) at Sunnybrook and Women’s College Health Sciences Centre. He was referred to this study after being seen in the Emergency Room following his first concussion. Hopefully, my son’s history, progress and present condition will contribute to the knowledge gained.
Small comfort to a seventeen year old boy whose life has been put on hold. Another day spent with Mom — no substitute for the world he knew and longs for — the world of friends, sports, school and a healthy mind and body.

Postscript — September 2002

Our contact with the above-mentioned Concussion Study led us to further resources and help for my son following his more severe third concussion. As of January 23, 2002 he began attending The Traumatic Brain Injury Clinic at Sunnybrook Hospital. On April 17, 2002 he began therapy sessions at The Toronto Rehabilitation Institute Neuro Rehab. Program (Rumsey Centre). We are extremely grateful that such help was available.
His last visit with the Traumatic Brain Injury Clinic was on June 6, 2002.
His final session with the Toronto Rehabilitation Institute was on July 25, 2002 — his last physiotherapy session for his balance problem.
His final follow-up with the Sunnybrook Concussion Study took place on August 8, 2002.
And his first House League game took place on Thursday, September 26, 2002.
Despite my misgivings and fear, he was given the okay by therapists and doctors to play in the no body contact House League. Their reasoning? He is sufficiently recovered to resume certain sports. They also believe that if possible — and within reason — it is best not to deny a young athlete any future participation in a sport he or she loves. My son’s world has already changed in so many ways. A world where athletics are totally forbidden would add to and/or create more stress, frustration and anger — all symptoms he experienced with the post-concussion syndrome.
Was he nervous the day of the game? Yes. He knows what is at stake. He won’t be taking any unnecessary risks. And did he play well? Yes, and was thrilled to be part of a team once again.
Was I nervous watching the game? Very much so. As much as I love to see my son play in a sport he loves, I am comfortable and relaxed only when his shift takes their turn on the bench.
My son is one of the very lucky ones — recovery time from that last concussion took only seven months out of his life. There are other young athletes who suffer permanent brain injury following concussions sustained in their athletic careers. I have listened to their stories, their family’s anguish and our own experience of upheaval and fear pales in comparison. Our world is back in place. Theirs will never be the same again.
What has changed in our lives is the fact that my son has matured in ways many of his peers have not. Gone is the silent but pervasive “I am invincible” teen mantra. He has lived in a world of pain, a confusing and terrifying world where his brain did not function at full capacity. This is an experience he will never forget. Nor will we.


Megan said...

Wow, worth reading every time. And what a brilliant idea to share it on your blog - it will help, and it will make a difference. Good for you (and great for our player).

Anonymous said...

Gosh Beth, I had no idea. It's frightening to think about all the dangers that could befall our children just leading a healthy active life. It's such a struggle to keep a balance between wanting to protect them at all costs and letting them go to pursue and fulfill their own longings.

My middle boy has also had two concussions but to try and keep him off skiis is like trying to deny someone sunshine. So we take reasonable precautions (like helmet and no stunts) but because I am not tethered to him I can't be sure of anything. Nobody can. And like you said a helmet only goes so far but in the end their brains are still vulnerable.

Good article.

Anonymous said...

WOW, I didn't realise the potential damage that could occur from this kind of injury. I thought it would just go away after a couple hours of rest.

Thank You for sharing that, I will definately keep that in mind concidering I have a son who seems to be very accident prone.

Beth said...

megan: I got his permission to post this. Good kid. I think he wants the message out there, too.
I hope it does make a difference.

trish: Ah, the middle son syndrome... The concussions also happened to our middle boy.
Since your guy has had two, I really hope he's one of those who would recover quickly from a possible third. Because you're right - how can you keep him off the slopes?

coffee mom: I'm going to count you as one of the first three to take my message to heart. Thanks for reading the article!

Nomad said...

Beth thanks so much for sharing,
I admire your compassionate and compelling article.

It IS an important message.
We are brain safety freaks over here..not sure why but even my 6 year old could tell you all about it, as we have had lots of discussions.

I was not aware of the degree of seriousness for secondary and tertairy brain injuries and am glad to know now.

I France they do not wear helmets for ANYTHING. It drives us crazy, but my kids do all the time.

I am so glad that your son is well and loving life again and I am sure your message reached and helped many.

Thanks for sharing!!

Beth said...

nomad: I am so glad to hear you are "brain safety freaks" - even your little six year old! So much better to be aware of the possible consequences of head injuries sooner rather than later. I don't think the public is fully aware of the problem or perhaps just hearing numbers doesn't sink in. Our High School used to (still does?) take the students to a local rehab centre to visit victims of such accidents. A real eye opener for kids.

thethinker said...

That was wisely written and well worth the time spent reading. I've got to say that it makes me think twice about the whole "invincible" thing, being a teen. I don't take hits anywhere near as hard as hockey, being a gymnast, but the chances for injury exist in every sport and sometimes that's taken for granted until it's much too late.

Beth said...

the thinker: So glad you read the article and that it made you think. I'm thrilled that someone your age read it.
Best of luck with your gymnastics - be careful of those flips, the balance beam, the box horse... (So sorry, I'm sounding like a mother.)

Dorky Dad said...

That was excellent. Very well written.

Concussions are just ugly, ugly things. And I tend to think they get blown off -- just read what's happening with some retired athletes now who've suffered from multiple concussions. It's sad.

Thanks for sharing!

Beth said...

dorky dad: And thanks for reading! Take care of your little guy - more males than females suffer concussions. You can't (and shouldn't) prevent them from playing sports - just gotta watch out!

oreneta said...

Eric Lindros also had a major problem with this, but is I beleive still playing, am I right? he had multiple concussions that led to him stopping his career for quite some time...

I also heard and interview on CBC with a concert violist who had flown with a concussion...very big mistake. He lost, along with many other capacities, his mother tongue..although he could still speak other languages.

I worked with brain injured adults for several years and I am so glad that your son has recovered.

Beth said...

oreneta: Eric Lindros actually ended up playing for the Leafs last year. I cringed whenever he was on the ice. He suffered another injury (wrist?) and stopped playing. I don't know where he is now - or if he is still playing.
I didn't know about the consequences of flying with a concussion. Guess the doctors would have told us if the subject had come up.
It's scary, isn't it, how fragile the brain is to this kind of injury and how few people realize it.
Thank God our boy recovered.

ted said...

Oreneta and Mom: Not only did Eric Lindros suffer many concussions, his brother Brett was forced to retire from professional hockey at a very early age (I believe either 21 or 22).

Concussions and head injuries in general are very scary things. The long term effects of what happened to me (and others who have had similar experiences) are still unknown.

I think that the worst part about the whole ordeal was a general lack of understanding of friends and even some family. If you haven't experienced it, it is very hard to understand. It was very difficult to explain to people what I went through, and even after I had explained, they still did not understand.

I do think that my mother has a very good understanding of what I went through, because she was there every step of the way. Thanks Ma!

Beth said...

ted: You are so very welcome, sweetheart. Thanks for the comment - it adds to the whole piece.

Love ya.

patricia said...

What a great piece. Lots to digest. I can't really relate, not having any kids, and none of my blood nephews play hockey, so it's never come up in conversation. My husband's nephews are big hockey freaks, but they're still pretty young, so they haven't yet experience the serious hits one can get in hockey. Not that I ever want them to! I'll definitely be asking my sister-in-law about concussions in hockey the next time I see her.

Beth said...

patricia: Last I heard, young kids were being taught how to deliver hits in their leagues. I could be wrong. There was controversy about that, too.
And please do talk about concussions with your sister-in-law. Spread the message!

ted said...

Mom: The debate about hitting in hockey revolves around the age in which kids are taught. It is not an issue in girls hockey because there is not hitting in women's hockey ever.
Recently in men/boys hockey they lowered the age in which boys were taught to hit. The thought being, that if they were taught how to hit and how to take a hit at an earlier age, that there would be less head/spinal/other injuries. There is evidence supporting both arguments (the other being that they should have left it alone or made it later on).
I personal believe that if they were to learn at an earlier age it would be beneficial. The only problem with that is that in order for this method to be effective, there must be proper instruction on how to give/receive a hit.
Anyway, that's what the debate is about. As of now I believe kids are learning to hit between the ages of 8 to 10. Whereas it used to be at the age of 12 to 14.

Beth said...

ted: Thanks, kiddo, for clearing that up. I thought my information might be out of date.

patricia said...

Thanks for that info, Ted. Now I'm definitely going to ask my sister-in-law about this subject. Her one son is 12, and the other is 10, and I've honestly not really thought about the physical stuff that they are doing on the ice (and I must confess that I really don't like all the checking which sometimes leads to fighting, but then again I, um...don't really like hockey at all. Please don't kick me off your blog, Beth!)

I really couldn't say when is the right time to learn this stuff, since I'm not expert in sports (obviously). But an interesting subject nonetheless!