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Support group has made me feel worse today

(10 Posts)
used2bthin Tue 14-Oct-08 14:43:56

Just went on DD;s support group website and saw an article about a little girl who died as a consequence of the op dd has just had. It was the fact that she was more vulnerablr than usual and then contracted an illness which killed her but I feel I have put my dd at risk choosing to let her have it this young and also she is due another when she is healed as we had said we wanted it all over with in the hope she'd forget it. Poor poor family it was very unusual and of course just devastating.

TheodoresMummy Tue 14-Oct-08 16:29:19

Poor family !! sad

But you said yourself it was very unusual. Try not to worry about your DD (easy for me to say, eh?)

I can see why you would want it done early so she will not remember it.

used2bthin Tue 14-Oct-08 19:32:11

Thanks TheodoresMummy, it was such a hard decision and one that I don't feel I had enough professional help with really. I can't stop thinking about the family and the fact that it was linked to the operation.

needmorecoffee Tue 14-Oct-08 19:32:35

what op did your dd have? All ops carry a risk unfortunately sad
How is your dd?

used2bthin Tue 14-Oct-08 19:37:36

It was on her bladder tubes its related to her condition and sheis vulnerable to illness as it is as is steroid dependant.(as was the other child) It is something I had to decide, it needs doing before nine and we felt it was kinder to get it out of the way for her. Sometimes the support group upsets me more as I would never know about the awful cases i I didn't go on there. Its happened once before after she'd had a bug and got ery ill with it I read about an adult with the same thing dying from not getting help fast enough(had same condition as DD I mean). But I can't help but look.

used2bthin Tue 14-Oct-08 19:38:55

Srry she is doing really well thanks (touch wood). She had her catheter out today.

needmorecoffee Tue 14-Oct-08 19:49:41

its hard not to read scare stories. I worry myself about death from epielpsy, about dd's 50% chance of dying before 10 and scare myself rigid about allowing her to have a G-tube.
But you have to do what is recommended for your child. If the op will save problems later and its a necessity then its best its done.
Great news that she is doing well. Is she out of hozzie?

used2bthin Tue 14-Oct-08 19:56:35

Yes thank you we were out the next day it was amazing. It was a two stage op so she's got more to be done still. I suppose she will always be vulnerable though so no different leaving it till she's 8. I hated that I had made the decision to have it done early though and knew I'd feel awful if there was a complication. Not sure she'd cope with pneumonia that well at the best of times though. Poor family. The surgeon wouldn't make the decision for us so it was hard to know what he thought but he did say he thought it best to do before she's five ish for psychological reasons and missing school etc.

Hope your DD does well with her G tube is that a decision you had to make or did they tell you what to do? It is so hard not to read scare stories I agree, especially when your child is vulnerable. Saying that, I have also had brilliant support through the internet I just wish I could filter it sometimes although there is that thing of needing to know.

needmorecoffee Wed 15-Oct-08 07:56:45

dd is borderline for needing a tube so its not life and death so the decision is ours. But how do you decide? Lots of support groups (most American) are all saying have it doen its greats etc but americans lik surgery. To me it will difigure her tummy and make her even less 'normal' than she already is and maybe she'll forget how to eat by mouth.
I wish it were black and white sad

used2bthin Wed 15-Oct-08 14:03:29

Me too needmorecoffee. And then I get into thinking its not fair etc. Its not though! I really feel for you that is a hard decision and not one anyone would want to have to make. We've got an American support group for DD's condition too and it confused me as some were saying its cruel not to do it early and some that its cruel to do! All felt very strongly of course as it was a choice they'd made and had to live with, argh!

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