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Thursday, May 12, 2011

Lies, damn lies, and statistics

Like many small children, the geeklings have had ear problems which required them to have ventilating tubes (grommets) put in their ears.  Unlike the vast majority of these children, my boys' ear problems occurred early, were quite severe and have lasted well into their sixth year of life with no sign of abating.  This has led to our being under the care of an Ear, Nose and Throat specialist since the children were first diagnosed at 17 months of age.  They are currently five and due to celebrate their sixth revolution of the Earth around the Sun in November.

Every time their grommets fall out, a condition called "glue ear" resurfaces and their hearing problems return.  Glue ear is essentially when fluid becomes trapped behind the ear drum, causing it not to vibrate effectively in response to sound and voila, instantly deaf child.  And every time this happens, I am faced with choices about how, if and when to treat the child in question.

Grommets, contrary to popular belief, actually come in two varieties.  Most people are familiar with what are called "temporary" grommets - inserted into the ear drum, these grommets slowly work their way back out again, usually within six to twelve months of being inserted, and fall out.  The chance of having a hole left in the ear drum (which would then require corrective surgery), is around 1%.

However, there are also "permanent" grommets.  These last around two years, and generally need to be removed surgically under another general anesthetic.  Permanent grommets carry a higher risk of complications with regard to leaving a hole in the ear drum - around 10%.  It also guarantees that he will have to have another general anesthetic, which carries it's own risks.

And then there's doing nothing, which carries a risk of it's own.  Untreated, persistent glue ear and recurrent ear infections can also injure the ear drum, leading to permanent hearing loss.

Recently, Geekling V2's left grommet fell out, and the dreaded glue ear returned.  This was his third set of grommets, and his surgeon and I had held some hope that having now turned five, which is a "milestone birthday" for these kinds of problems, perhaps he'd have grown out of the problem.  No such luck.  So I've recently gone through, yet again, the decision process about what to do.  Do we wait and hope the right grommet carries him through another winter before failing (in which case he'll be up for a set of permanents if the glue ear reappears after winter), knowing that if it falls out mid-winter, he'll be up for another set of temporaries, or do we book him in for surgery to get a new set of temporaries now?

I've been asking a lot of people's opinions, and realised in the end, that nobody has enough information to "advise" me, because the statistics don't speak for themselves.  In the end, no-one knows my son, and his medical history, and his parents medical history, the way I do, and his surgeon does.  Also, no-one else is able to apply the relevant soft factors to this decision - the emotional toll and frustration of living with a child with an intermittent, but severe, hearing loss.  The worry of doing nothing hurting him more than doing something, and the worry that doing something might hurt him more than doing nothing.  The gut feeling that says that despite the fact that statistically, my child has a good chance of getting past it this year, I don't feel like he will.  The same way he didn't last year, or the year before, when the statistics said the same thing.  How well he handles anesthetic.  Knowing that he's small, he's a twin, and both of his parents had ENT complications, with one parent having non-trivial complications over a number of years.

It's funny that it's taken me this long - between the two geeklings, this is the eighth time I've had to sit in the surgery decision hot seat - but I've finally connected with just how personal, and emotional, these choices are.
How unique to every family the choice is, even for the same problems.  Hearing everyone's thoughts was really valuable to me, and helped me sort through the process of making the decision.  However, the biggest thing that it reaffirmed was that I am the best person to make this choice, because I know my child and his needs the best.  I came to the realisation that ultimately sometimes the statistics are meaningless for my child, because he is not going to be part of the lucky group who grow out of it by the "magic age".

And that none of us can really, truly make a judgement call on someone else's decision to have surgery or not, until you've been sitting where I am - deciding for someone who means everything to you, how best to get them through.

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