Saturday, April 18, 2009

Stunned

I've often found that following the Google links which have led the occasional passer-by to these, my humble digs, has led to interesting results. That I could discover some interesting, totally unknown stories or blogs.

But what I discovered today has left me totally stunned.

I have long been aware that it is necessary for people with epilepsy to be closely supervised in the water. For example, people with epilepsy can easily drown in the bath water should they take a seizure. And thus, when the time came that the Blue Jay could finally show some independence in her personal care, we taught her to shower and have kept away from baths.

The Blue Jay loves the water. Always has. Never an ounce of fear. So every time she happily ran off to summer camps, I warned the staff that she required one-on-one on the water due to the possibility of a seizure. 'Not a problem', I was always told. Although thinking back on it, something tells me that once she was little older (perhaps 9 or 10) that supposed 'one-on-one' became something closer to the camp leaders just keeping a little closer eye on her than the other kids.

When we were away, camping or at a hotel, the Blue Jay was not allowed to just go down to the pool alone. Initially, either my husband or I would be there, if not swimming, at least sitting beside the pool watching her. As they got older, I have often delegated the job of keeping an eye on the Blue Jay in the water to her younger sister.

And she has become a darn good swimmer, competing yearly (and practicing weekly) in the Special Olympics.

And so, I have done a good job. I thought.

Until today. When I read this.

A 14 year old boy who had had epilepsy from the time he was 7 drowned in a lake on a school outing.
He had always previously been accompanied by his parents when he went swimming. On this occasion he went on an unplanned swim in a lake with 10 or 11 other children and about 15 teachers. He was observed playing happily with the other children, throwing water about. He then disappeared from sight. The teachers did not suspect that he had drowned until the party was about to leave. Divers were called and they found him in about 1.5 m of water. There was a small cut above one eye but no other sign of trauma. His arms were crossed over his chest, as had previously been observed by his parents when he had a tonic seizure. The coroner's verdict was death by drowning secondary to epilepsy.

His parents contacted the British Epilepsy Association and were informed that swimming is good for people with epilepsy and should be encouraged but should be supervised. They asked the question: “What does this mean?”

His parents said, “The supervision should be one-to-one. He should have had someone in water with him. There was no chance for anyone to save him. I think we were blissfully ignorant. I know now he could have had a seizure in the water and I would have been totally unprepared for it. I'm not sure even now that I'd know what to do to resuscitate him. The whole business of epilepsy should be explained properly. You almost need someone to go through it with you.” His parents also commented that children with obvious physical disability tend to be better supervised than those who are able, like their son was.
And so, now I sit here, stunned. With more questions than answers.

The case study explains how during a particular type of seizure, known as a tonic seizure, the muscles of the chest wall contract and much of the air from the lungs may be expelled.
If such a seizure occurs while a person is swimming, the average body density may become higher than the density of the water, causing rapid submersion. When the muscles of the chest wall relax, the person will still be submerged, with the result that water, not air, will enter the respiratory tract and the person will not rise to the surface.
And how a person supervising someone who takes tonic seizures must be aware that the person may sink quickly and may be difficult to rescue because they will then be heavier than water. That the person supervising should be capable of taking the necessary action should a seizure occur, implying that they should be physically strong enough to rescue the swimmer, competent in the water, and properly instructed.

So. Obviously what we have been doing is not good enough. We have been very, very lucky. There, but for the grace of God, indeed.

And yet.

And yet the Blue Jay is a good swimmer. A very good swimmer. A competitive swimmer. And an adolescent who struggles demands her independence. Independence which is, by necessity, much more limited than that of other teenagers her age. The very thought of attempting to take away any of that hard-won and well-earned self-sufficiency is mind-boggling.

But what good is independence if you're not alive to enjoy it, you ask?

Good question. Very good question.

4 comments:

Eileen said...

Well you have brought up an interesting and certainly worrying problem.One that I cannot even begin to give an opinion on because, as you say the Blue Jay has worked hard to get where she is now in swimming. And she enjoys it. And I think that living is such a risk ... walking, running,driving, travelling, climbing trees ...eating even. And ... oh my Goodness, what a difficult situation.

Isabelle said...

That is an excellent question. My next door neighbor is 94, lives alone and takes care of herself but in reality she has a network of people who take care of her in a number of ways. One person gives her the newspaper every day but they don’t just drop it at her door … they make sure they talk to her so they know she is ok. Another person makes sure she has fresh bread and milk so that she isn’t stretching out her weekly grocery order. I make sure that her garbage is removed every day. And on it goes. Is this woman independent? I think so but she is because the neighbors have taken her under their wings as best they can. It sounds to me like the Blue Jay is surrounded by people who care, are aware of the challenges and who pay attention … that is enough.

Punkys Dilemma said...

It's so hard being a parent of a teenager with mood swings, hormone rages...all that good stuff that leaves a parent feeling overwhelmed and sometimes wondering, "where did I do wrong with this person that I no longer know?!" On top of having to deal with needs that are special with our teens has to put you in an unbelievable dilemma. Understanding how important it is to keep her safe, yet knowing the independence that she needs to survive.

On the one hand, I suppose one can say I'm lucky to have a child who at 20 years old and who's develomentally at the level of a 12 month old. I don't have the job of teaching her the reward and goals of living independently. On the other hand, seeing the benefit of your work blossom in your daughter has to give you joy beyond words. We all only want the best for our children. We want them to be the best they can be, with what they are able to do. And its an absolute thrill when they achieve that goal no matter how big or small.

At some point we have to let go and let them live their lives to the fullest. Maybe this is where we rely on God to take care of our children. After doing everything possible for their safety. And just pray they'll be okay.

MMC said...

Thank you for your thoughts, ladies.

It's not that I would ever seriously considering taking swimming away from the Blue Jay, she has worked too hard and it is too important and rewarding to her. But I was stunned by what I didn't know, with the possibilities of what could have happened in the past. I will run this by her neurologist the next time we speak but in the meantime, I think we need to be a lot more careful and aware of what we tell people. And obviously leaving her sister in charge when there is no lifeguard present cannot be a plan.

Yes, punky, it's both rewarding and exhausting at the same time. I am truly amazed at how far the Blue Jay has come. And honoured to be her mother. Even if there are days I could happily ... well, perhaps we won't go there right now. ;-)