Huge decision. Don't know what to do.

[becca022]

We went to see the Rehabilitation team today about ds who is 5 & has got Spina Bifida about getting his legs straightened (they are bent & can't straighten his left leg at all).

They were saying that with his level of sb he might be able to walk with a lot of assistance & it will be hard for him physically especially as he gets bigger, they also said that they can't guarantee him still being able to walk when he becomes a teenager which will then require more surgery so he can sit comfortably in his wheelchair again.

They said the decision is entirely ours. But I thought I'd ask other mums what they would do in our situation.

Give ds the chance to walk even if it's only for a few years, or let him stay in his wheelchair which is what he's always known?

[boysrgr8]

That is a hard one. What is your heart saying??

[becca022]

Part of me says yes... part of me says no.

We would both love to see him standing at least, it's all we've wanted for 5 years.

[boysrgr8]

I totally understand that! Firstly hugs, it must be so tough.

I don't really want to give any advice.
What happens if when he goes through all the pain to walk and then is really frustrated that it can't last.
Also what happens if he totally blows their minds and doesn't ever revert.
I only say that because some of my friends children have proved everyone wrong.
I know I haven't helped in the slightest and that I probably only confirmed your position but I feel you can only do what you feel is right for your son.

If you really want me to tell you what I would do I will tell you, but I don't know your son or your journey.

Massive hugs to you. xx

[becca022]

Dp & I were also saying what if he proved everyone wrong. He's already done that with the wheelchair, even his physiotherapist thought it would take him months at least to work it out.... He had it worked out in 15 mins.

[Nowhere]

Hard one, And as a mum that seen her chld be able to walk then deterate so much that she couldnt any more, It broke my heart it really did BUT I would never have denied her that time that she could walk KWIM. we was lucky that she has again reganed that skil and can walk a lil bit now.

I would be weighng up the risks versus benifits of surgery, If your DS ismentaly able to talk to you or sign with you hs thought on the whole thng then I would discuss it with him also.


Such a hard thing to decide massive hugs

[becca022]

We've tried to ask him, but mentally he really doesn't understand. I asked him if he wants to use his wheelchair or walk & he just asked to go to the kitchen. We would love to know what he would want but unfortunately he doesn't have that understanding. He just thinks he's going out in the pram or wheelchair if we ask if he wants to walk.

[boysrgr8]

Oh bless his cotton socks. I love that he asked to go to the kitchen.

[moozle]

Wow, that is a huge decision to make. I don't know what to say but just want to give you some :hugs:

[Nowhere]

We've tried to ask him, but mentally he really doesn't understand. I asked him if he wants to use his wheelchair or walk & he just asked to go to the kitchen. We would love to know what he would want but unfortunately he doesn't have that understanding. He just thinks he's going out in the pram or wheelchair if we ask if he wants to walk.


yer thats what I thought as Kenz is the same she dont see it as being any difernt.

I really feel for you making ths decison so not fair :hugs:

[Bel1978]

If u don't do it you will always ask what if.....

How difficult is the Op is it very risky??? Is it going to put financial pain on your family...

If joy your son gets from acheiving what he has never done might well be worth it even if it's not for long... What if he keeps walking and later down the track he still is....

I would speak to Doctors about the mental health issues if he does walk then one day he can't what will that do to his moral??

[becca022]

They'll lengthen something in the back of his legs. He doesn't have much feeling in his legs so fingers crossed it wont be too traumatic for him. The worst thing financially for us will be accomodation & food in Adelaide. I think he will still be using a wheelchair part time so he'll never fully be out of it. Walking will be hard on him physically. Hopefully if we do go ahead with it he won't have too many issues going back in his chair. He's pretty easy going & chilled about things.

[luvmyboys]

There is a show on Prime at the moment - surgery saved my life about two boys who have cerebral palsy who are having operations so they can walk, I know it's a totally different condition but I thought it still might be interesting for you to watch, it was on discovery channel too you might be able to find it on again.
I think I would be tempted to try it but I know it's a huge decision and there are no right or wrong answers, best of luck.