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Charles on… anything that comes along

Saturday 14 May 2005

Filed under: — Charles @ 10:20 pm

The big black wings of decisions avoided

When father-in-law told his two sisters of baby3’s deafness, their reaction was uniform: “Well, it’s not from our side of the family!” As if that mattered?

It’s like tutting over the maker of the truck which hit you as you crossed the road. Except - and let’s remember the perspective - this is not as heart-wrenching as the toddlers who get mown down by cars outside their homes or (as I recall in one saddening piece of copy I saw go by on the wires one day) by their own parents backing out of the drive.

We’ve tried to avoid wondering about causes, because it doesn’t really get you anywhere. So the other day we had to take baby3 to a specialist, because he has an ear infection. The GP had taken a swab and rung us up, a little concerned: acinetobacter baumannii, which is antibiotic-resistant (agh!) though happily only colonising - like E.coli - rather than infectious. (In the process, I discovered emedicine.com, which is a terrific resource if you can bluff your way in a bit of medical stuff and know what they mean in ER when they call for a CBC, which they do all the time.)

Still, that raised the question of what it was doing in there and how it got there, especially since searching on the web gave links to battlefield hospitals and war zones. Hmm, have we taken him to any? Sure, there was the supermarket on Saturday, but..

When we dropped an email with ‘acinetobacter’ in the title to someone at the nearest hospital, he told us to get a referral “urgently”. Ooh, not too worried now: GP rings us out of the blue, expert recommends urgent referral.

When we got there, baby3 first charmed the staff on reception - amazing how babies can make even the most gorgon-like ones melt with a few winsome smiles - and then protested like mad when the consultant stuck a swab into his ear and then gazed into his infected ear to see what was cooking.

Then we all went into another room away from ear-gazing things (all right, otioscopes) and dentist-style chairs. So, we said, how bad is this bug? He was unworried (which didn’t surprise us, in fact; baby3 was pretty happy with everything, and wasn’t acting at all like an infection-troubled child).

Then he started asking some more directed questions about baby3’s deafness. Rash or illness during pregnancy? Apart from evil morning sickness, no. baby3 had any time in intensive care? Nope. History of deafness in the family? None that we know of, at all. “Of course,” he said, “it could be that the tests were wrong about his hearing.”

As lifelines go, this one was about as useful as being picked up by the Titanic in mid-Atlantic. We gave him our Easter Island faces. We’re sure: baby3 can’t hear. “But we generally find that the parents know whether they can,” he said hurriedly.

He was interested, engaged, and then said something. “Hmm,” he said, “this could be due to what we call a recessive autosomal* gene.”

Oooh. The words whistled past, like bullets. Meaning we’d each brought a gene to the party, and the chromosomes had done their dance, and baby3 ended up with the two broken ones.

Was it likely to be a single gene, rather than multiple? I asked. He replied: “Polygenic genes tend to lead to hearing problems later in life.” Oooh.

The cause was likely to be the gene coding for connexin, he suggested. From my reading, it’s a protein which essentially makes the cochlea work. (But why should it lead to deafness? Officially it’s transmembrane proteins that form channels allowing rapid transport of ions or small molecules between cells. OK, so why?)

So we’d actually, with child1 and child2, dodged bullets, if you like to look at it like that. Each of us with a recessive gene; so the chances we’d both contribute it to a child is 1/2 each, or 1 in 4 per child. How strange to be part of the Mendelian game, like peas cultured in a monastery garden.

It’s at this point, after having written so often about genetics and gene testing, that you hear something different: the distant beating of the big, black wings of eugenics. What if we’d had our genes tested before we had children, and someone had put their hand to their chin and said: “Um. You know, you’ve each got a gene called DFNB1. Now, if you both pass it on to a child, there’s a high possiblity that they’ll be profoundly deaf.”

What would you think? And do? What if the test were done in the womb? What would you do? What would you be allowed to do? It gives me a whole new perspective on the Down’s Syndrome question. I know two people who’ve had Down’s children, in both cases unexpectedly. You can get testing, and sometimes abortions, for children diagnosed as Down’s. How close is society to extending that?

This has given me a quite different perspective on the question. I don’t - honestly - know how I’d have reacted to the gene test, or to a womb test on deafness. I think I’m happier to have arrived here in ignorance. It’s bliss, of a sort.

(* Wow, found that completely by Googledipindity: medterms.com. Very useful.)

3 Responses to “The big black wings of decisions avoided”

  1. Andrew Brown Says:

    You make me realise how very difficult it is to distinguish between a condition which makes the baby’s life not worth living, and one which causes the parents pain and horror they would rather avoid. I don’t know whether in fact people believe that they should always act for the sake of the child; but I do think it’s what we believe we ought to believe.

    Everything you’ve written suggests that baby3 is happy to be alive and would be grateful if he knew you’d had the choice.

  2. Paul Guinnessy Says:

    This is one of the worries that the deaf community has in the US, that they might be made extinct through genetic manipulation. Its an interesting question of what would you do if you knew everything about the health of your child in the womb. Deafness is something that could potentially be corrected after birth, while Down’s Syndrome currently could not. I’d be lying if I would say that wouldn’t factor into my decision on whether to seek an abortion or not. I also think its one of those decisions that I’m grateful that I currently don’t have to face (maybe in the near future). But if you look at a place like China (or to a lesser extent, India) there are services out there that will tell you the sex of a baby, and if its a girl, the parents may decide to abort, for cultural reasons. That just seems wrong.

  3. Chris Says:

    Just listened to Richard Griffiths on R4 talking about his life. He was brought up by profoundly deaf parents and learned sign language before spoken language.
    The only real disadvantage he mentioned was not having radio as a kid. His parents bought tv as soon as they could, but for them radio had nothing to offer (obviously).
    I’ve always admired him. Evidently, his parents rose above their disability at a time when very little support was available and produced a great actor.

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