to expect someone shouldn't take so much glee in this...

[Odysseus]

My DS has an "anomaly" picked up at the 20 week scan. Inherited from his Dad. We knew we had an increased risk - and it's not life threatening so I shouldn't moan, but it has been a hard journey so far.

Yesterday someone (who has the same condition but didn't pass it on to their children) told me, with a huge smile on his face and "isn't this interesting!" that my DS has an even higher risk of his children having it. 1 in 4. I didn't know that I thought his risk would be the same as ours - not worse.

Over the last 18 months I've held it together throughout my pregnancy, the birth and seeing the extent of the problem, and the surgery since DS' birth. But when he told me that, and with such...almost excitement, on his face, my stomach just fell through the floor. It was just so insensitive. I think.

Or am I being silly, and oversensitive?

What a twat. He may well be wrong though.

Apparently it's not done on MN but (((hug)))

what a crap thing to say to you!

I don't think you're being oversensitive

not sure why your ds would have a higher risk of passing it on though, are you sure he's right?

I suppose 'Oh do fuck off, you wank-sock' would not have been appropriate?

Insensitive twunt.

Oh OP . You are not being silly, or oversensitive. Poor you. Some people are really thoughtless.

Also, as an aside, are you sure he's right? I have a background in genetics; I can't see how your DS would have a greater chance of passing it on than his dad.

And congratulations on your DS. I bet he's gorgeous.

This non-friend may well be wrong; I hope so.

His unfortunate condition is called schadenfreude I believe.

Sorry for what you're going through.

Is there any chance at all that he meant it in a bonding way - both faced the same rare condition, rather than joyful that you're going through this?

Interesting about the condition and that you both have a risk, the co-incidence of it rather than being happy about your situation, iyswim?

Let's face it, being happy about it would make him a raving loon - is he a raving loon?

Well the source of his info is top in the field - so unless he has misquoted it I think he probably is right.

I told my Mum and she was like "well what did you expect?" Which is why I'm wondering if I'm overreacting....but actually I would expect one of the countless medical professionals we've seen to have to have told me this before....and i also would expect to be allowed by my Mum to just have one 10 minute moan about the unfairness of it and yes I know it could be so much worse, but it could also be better! Rant!!!!

I don't know why it has hit me so hard, there have been worse things along the way that I've just taken in my stride. Perhaps thats why - because I don't want DS to have to deal with it all over again with his children.

No, I don't think he is a raving loon - perhaps he was trying to empathise. But starting the conversation with "I haven't passed it onto my children, but your husband has" didn't really get me onside

I suspect he is more likely to have misunderstood than misquoted.

What's the anomaly? I might know a bit about it. I too think it's unlikely that you wouldn't have been told about a raised risk of your son passing it on.

If you're more upset about the man's horrid attitude than the actual statistic then I am happy to butt out, but also more than happy to have a look at the genetics of the anomaly and tell you if your friend is right or has misunderstood his specialist.

He has a cleft bosomsbythesea
I'm upset by both really. I would like to know if it is true please, if you know anything in that area?

Ah, sorry, x-posts.

AFAIK cleft palates can be produced by combinations of a large number of genes, so without knowing exactly which mutations are involved your "friend" is probably talking out of his arse.

Aaah, I do know a bit about cleft lip and /or palate; a friends DH had a cleft and she was worried a few years ago about inheritance so I did a bit of research for her.

The genetics are not hugely well understood, but the current understanding, as Trillian rightly says, is that the genetic component is very complex.

"If parents without a cleft have a child with a cleft, the chance that a subsequent baby will have a cleft is only two to four percent. If either parent has a cleft, the relative risks become about four to five percent for having a baby with a cleft. If both parents have clefts, the risks are much greater (Slavkin 1992).

So, when your son has DCs, his chances of one of them having a cleft will be 4-5%; the same as the risks were for his dad.

And also, by the time your DS does have kids, you can bet the genes responsible will have been identified and there will be a very effective gene screening programme, if that is what he wants.

Your friend, I can conclusively say, is takling out of his behind.

Hope that helps

I suppose that it makes sense that your DS has a higher chance of passing it on than you thought your DH had -- because the fact that your DH and DS both have a cleft means that in the case of your family it is probably genetic rather than "just one of those things", and therefore when they are assessing your DS's risks of passing it on they will do it on the basis of its being a cleft with a probable genetic basis rather than a cleft of unknown cause.

But it doesn't mean that he has a higher chance than your DH actually had of passing it on -- if your DH's cleft is genetic then it has always been genetic and he's always had a fairly high chance of passing it on. But until your DS's cleft was detected they didn't know whether your DH's cleft was genetic so would have assessed his risk of passing it on on the basis of his cleft having an unknown cause.

Giving a "1 in 4" risk certainly seems like talking out of someone's arse, though, given that there are all sorts of combinations of genes involved.

If you are planning another child it could be worth talking to a specialist to get a view of what risk level they would give for that child's being affected, given that you have already had one child with a cleft; you may find that those odds are higher than the odds you had before conceiving your DS.

Please don't let this worry you (although being narked at the comment is understandable. I agree that your son's chance of passing it on wouldn't automatically be higher, the only way to know that would be to get his (and your dh's) DNA profiles.

More than that, our understanding of genetics (and related epigenetics) has come on massively this past decade and by the time your son is of an age to have children I can only imagine we will know about and be able to treat so many genetic issues.

What Prof Layton said - he has a higher chance than you thought your DH had (because now you know it is genetic) but no higher than your DH actually had.

don't think your a loon but you may well be attributing motivations and intentions to him which weren't there. Impossible to know with not being there but I wouldn't rush to label him a dickhead as others have.

Both my kids had clefts, neither myself or DH had one. With our first it was explained as 'just one of those things'' once we had both it was seen as genetic. My understanding is they have a greater chance of having a cleft affected baby than I had, IYKWIM.

However, the odds of them NOT having a cleft affected baby are much much higher than of them having one.

Is he a bit autistic-spectrumy ?