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Original poster

I finally know why dd1 is disabled. It's because of me.

42 replies

Cappuccino · 22/01/2008 17:11

I've just got back from a speech therapy appt

the lady said that small speech problems like mine (I have quite a nasal voice) are often down to a specific chromosome deletion; in others they can cause a full range of physical disabilities, like dd1

we were told four years ago after MRI scans that it was not inherited and it was okay to try for another child, that dd1's disability was a one-off for no particular reason. Looking back it was a good job we didn't know, otherwise deciding to try again would have been much more complex, and dd2 is the most amazing child in the world. She is not disabled.

I don't know why I am upset, but I am. I want to talk to dh but he is away on a course and I can only talk when he calls me

I'm just having a bit of a cry now

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FioFio · 22/01/2008 17:12

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FioFio · 22/01/2008 17:13

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Original poster
Cappuccino · 22/01/2008 17:14

I don't know why I am so bothered

the only difference it seems to make is that dd2 will need to have blood tests to determine her risk of having disabled children

but it feels massive

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WendyWeber · 22/01/2008 17:16

capp.

Does she know that this is what caused dd1's disabilities though? Have you seen geneticists?

Saggybumandnorks · 22/01/2008 17:16

On Capp - don't cry. And don't blame yourself.

I think we've talked 'voices' before haven't we? I have a very nasal, deep voice too (and dd has a pretty rare heart condition) I've never heard that they can be caused by a deletion.

Hope dh rings soon so you can have a proper chat.

Original poster
Cappuccino · 22/01/2008 17:19

WW yes we did, and we had MRI scans done

but in the back of my mind it has always seemed odd that I had some of the speech problem that dd does, although only a part of it and to a lesser extent, so it does make a lot of sense

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FioFio · 22/01/2008 17:20

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Original poster
Cappuccino · 22/01/2008 17:25

Fio yes it is a mother thing, and in a way it means that it is over - the endless wondering if it was the time in the third trimester that dh and I had sex and got carried away and squashed the baby, or having 2 glasses of champagne on my wedding anniversary and then throwing up all night, or, or, or...

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WigWamBam · 22/01/2008 17:30

Oh darling, don't cry.

It's not your fault. Even if it is a genetic thing, it's not about apportioning blame. And it may not be genetic anyway.

Please don't blame yourself.

Twiglett · 22/01/2008 17:32

How does she explain new yorkers then?

what a load of tosh

Having a nasal voice might be genetic when it is down to the size of orifices and resonance .. but there are so many other reasons for it ... including where one was brought up (hence New Yorkers)

I am sorry you have been brought low

Peachy · 22/01/2008 17:40

It might be a possibility Cappucino, but it is NOT a given- you migt have a nasal voive becuase of adenoid infection as a child, it could be something completely different that happened to your DD and the gene wasn't even passed on (not all are, after all). She's very irresponsible saying this IMO, unless of course she is a top independent geneticist who has carried out a full karyotype stye assessmenta nd detailed screenings with history? no, thought not.

Have yout racked down Tamum to ask about this? She's very good on this sort of thing.

And even if it is inherited- it's hardly intentional is it? If a friend with a child with CF or ASD and no family history said they had caused it all themselves you'd say they were silly wouldn't you? of course you would.

The only times a disability is caused is where there is deliberate negligence such as a child who wasn't put in a car seat before an accident, or was dropped when mum was high on drugs. the rest of the time it's just a sad stroke of bad luck.

Original poster
Cappuccino · 22/01/2008 17:54

but I'm not from New York and I didn't have an adenoid infection; the operation that dd is being offered (which has a good chance of helping her speech) is the same one that I was offered

It's a shock, yes, but I don't want to talk myself out of it. It's an explanation, which I have never had before. Really the only person it affects is dd2 (oh Christ and I'll have to ring my dad's kids as well)

I have just spoken to dh who says I have given him two lovely children and nothing has changed, and he is right

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FioFio · 22/01/2008 17:56

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Blu · 22/01/2008 18:02

Oh god, Cappuccino - what a shock - of course you are upset.

But you have had two lovely children - and your DD knows she has a lovely Mum.

Blu · 22/01/2008 18:03

Yes - an explanation - and that is immensley valuable, really.

You are very brave, Cappuccino.

Threadie · 22/01/2008 18:09

If it is down to a genetic condition that you yourself have, that doesn't make it your fault! Are you to blame for your genetic make-up? Of course not! No more than your dc is to blame for her own genetic make-up. Blame your distant ancestors. Blame random mutation. Blame Adam and Eve. It is NOT your fault.

I struggle with this one a little (on a minor scale) as I have alopecia and I am waiting for any small sign that my children have inherited it. And I feel to blame at the thought. But it is really not fair to blame oneself -- one small link in a genetic chain.

welovetelegraphpoles · 22/01/2008 18:09

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yurt1 · 22/01/2008 18:40

She might be right, but she also sounds as if she was talking way way way out of line. SALT's aren't even 'allowed' to diagnose autism fgs - which does vaguely fall within their remit- they're certainly not meant to go around diagnosing chromosome deletions. It probably is worth getting some genetic counselling and following up in that way and finding out more about it.

yurt1 · 22/01/2008 18:41

And - although she might be right, she also could be completely and utterly wrong- no-one can diagnose chromosome deletions in that way. They just can't.

Tamum · 22/01/2008 18:43

Hello, Blu asked me to drop in. I have to say this is a new one on me, but that doesn't necessarily mean anything I know nasal voices caused by palate defects can be associated with other more complex problems but I haven't come across any evidence that they can, on their own, be caused by the same chromosomal abnormality as more complex syndromes. I've actually just checked Pubmed and can't see anything that would suggest this was true, but of course it's worth getting an appointment with a proper geneticist and getting a proper karyotype analysis done. Unless dd2 also has a nasal voice I can't see why it would affect her to be honest. I am really sorry you have been hit with this

Tamum · 22/01/2008 18:45

Ah, cross-posted with yurt who said what I was thinking about the SALT except I was trying to be polite

Original poster
Cappuccino · 22/01/2008 19:24

Tamum I really do appreciate you dropping in

My family is finished - I am practically 100% sure of this, as is dh - so I can't see the worth of putting myself through another round of genetic counselling

It's something that the dds will have to bear in mind for the future

it is so lovely to have mners around; I am being more pitiful tonight because I am alone, and tired, and have ME

a whole smorgasbord of stuff to moan about

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Original poster
Cappuccino · 22/01/2008 19:25

and no dd2 doesn't have a nasal voice - the SALT stopped her test partway through because there was no point continuing it, as she was fine

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MicrowaveOnly · 22/01/2008 19:37

cappuccino, its amazing how many health professionals say strange and dramatic things when they don't really know. 4 years ago my dd was diagnosed with a rare condition my hv could hardly have known about and yet she starts suggesting I might need to 'prepare myself'. I didn't sleep for weeks!and dd is definitely hanging in there .

Being a mum to an SEN kid means you've always got something to worry about!

Tamum · 22/01/2008 19:56

Oh god Capp, you don't sound remotely pitiful- just human I think you're handling it really well and realistically actually. To be honest I was recommending a geneticist more because I was sure they would prove the SALT wrong than because it would be useful, but I think the best thing you can do is to assume dd2 is fine for now, but just something she might want to bear in mind in the future.
Chin up xxx