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Feeling the burden of such a responsibilty! Sorry long..

(15 Posts)
slightlycrumpled Thu 31-Jul-08 13:47:07

Hi, I've namechanged but do sometimes post on SN.

My DS2 has di-georges syndrome which is a genetic condition. Throughout his life he has suffered some fairly awful illnesses due to a poor immune system and has undergone numerous operations. He is now properly medicated and actually the most fit and healthy he has ever been. smile

He does however have a severe speech delay, previously thought to be due to his hearing loss and has over the last ten months been recieving excellent speech therapy. Several months ago we discovered he also has a palatial incompentece which can only be corrected with surgery.

BUT... this is fairly major plastic surgery to the back of his throat which will narrow his airways. The problem is that one of his major problems has been his respiratory system and he could end up needing assisted breathing at night.

It's so hard to know what is the best thing for him. There is little doubt that this operation will improve his speech, but at what cost is the issue.

Myself and DH have this overwhelming desire to say 'no more' and have our happy signing child who makes funny noises, but is that the best thing for him long term when we are thinking about the adult he is to become.

Sorry for droning on, just wanted to write it all down iyswim. Feeling a bit weighed down today.
Thanks for looking.

slightlycrumpled Thu 31-Jul-08 15:22:14


mm22bys Thu 31-Jul-08 16:50:06

Hi Slightlycrumpled,

I can only imagine the turmoil you are going through, but I wanted to not have this ignored.

My thoughts are with you as you make this decision.

slightlycrumpled Thu 31-Jul-08 16:55:57

thanks mm22bys. Trouble is we think he is perfect (as you do!) but know that life will be very tough never being able to talk coherently. I know there are worse things in life though.

2shoes Thu 31-Jul-08 17:04:14

that must be such a hard decision to make. I can't offer any advice as I have no idea what I would do in your sitution. How old is your ds, and is it something you could leave untill he is older?

slightlycrumpled Thu 31-Jul-08 17:13:57

Hi 2shoes, he is nearly 5 and we could leave it untill he is older but the earlier the better in terms of developing his speech.

Surgeon is totally lovely and I'm really pleased he hasn't been written off as special needs so not worth it iyswim.

It just seems alot to go through for a non medical problem, although ringing in my ears is the chance at semi normal speech for him.

I just struggle with the realisation that the major decisions we make for him impact the rest of his life so majorly, compared to discussions over home work and being nice to his friends with DS1. sad

Tclanger Thu 31-Jul-08 17:23:15

Message withdrawn at poster's request.

GalanthusNivalis Thu 31-Jul-08 17:32:03

Hi, I have registered especially to answer you (it's OK, I don't actually expect you to feel honoured). I do know what you are going through. Our DD2 has DiGeorge. Fortunately for her (and us) her palate problems are the only real signs of the syndrome that she has.
She has had two pharyngoplasty ops and I am happy to discuss our experience with you if you want to email me (or CAT or whatever) or I can go into long a (mostly) boring details here.
Are you a member of MaxAppeal? They have a good Yahoo group for support as well as an informative website.

slightlycrumpled Thu 31-Jul-08 17:40:16

Oh my goodness - I do feel very honoured, how lovely of you!

I don't have CAT I'm afraid but I would love to hear your experience either by email or MN.

I have recently sent off my forms for MaxAppeal and am a member of the yahoo forum but confess to finding it difficult to follow.blush.

my email

GalanthusNivalis Thu 31-Jul-08 18:18:27

I have sent you an email SC. I hope it helps.

slightlycrumpled Thu 31-Jul-08 19:20:31

Have replied. many many thanks.

2shoes Thu 31-Jul-08 21:50:13

oh how nice.
good luck with what ever decision you make.

used2bthin Fri 01-Aug-08 22:42:08

Hi I came to find this thread after you mentioned it on my one. Just wanted to say good luck with your decision and that I (as you know from my thread) understand how overwhelming it is. I keep thinking that once I have made the decision it will feel a bit better but it can feel very lonely at times I know. I will tell you one thing that has helped me actually. I got to the point where it was just going round and round in my head constantly and I felt like I was getting nowhere as the arguments for and against seemed equally strong. So XP and I decided not to discuss it for one week and then to come back to it. So I gave myself that week to just try and take a break from it. I'm not saying I didn't think of it at all but I just acknowledged that I wouldn't be making any decisions in that time so it kind of took the pressure off a bit.

slightlycrumpled Sat 02-Aug-08 19:50:17

Thanks for coming to find me used2bethin! We have to see the consultant again in a couple of weeks and I think you are probably right about taking time out, so will try really hard not to make it the sole topic of conversation in our house. Anyway DS1 needs some tlc next week as he is having his tonsills out on Tuesday.

Oh for a crystal bloody ball!!!

used2bthin Sat 02-Aug-08 20:04:58

Oh you poor thing sounds busy at yours, good luck with DS1's tonsils! A crystal ball would be great I'll have one too!

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