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k1wimum View Drop Down
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Joined: 20 March 2011
Points: 53 		Post Options Post Options   Thanks (0) Thanks(0)   Quote k1wimum Quote  Post ReplyReply Direct Link To This Post Topic: spina bifida
    Posted: 05 April 2011 at 4:28pm
we went for the 20 week scan today and were told that my yet unborn son has spina bifida am about to go through testing to find out the sverity of it, a few years ago i had the same thing happen with our daughter she was born at 22 weeks because her outcome was the worst case senario. with this one they arent able to say much yet but from this scan it doesnt seem as severe. we have two beatuiful healthy boys aged five an 19months is there anyone out there that has a child with spina bifida and if so how severe is it and what should i expect eg, learning difficulitys, walking etc, any advivce would greatly help as im not sure if i can get thru this again
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kebakat View Drop Down
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Joined: 01 January 1900
Location: Palmy North
Points: 10980 		Post Options Post Options   Thanks (0) Thanks(0)   Quote kebakat Quote  Post ReplyReply Direct Link To This Post Posted: 05 April 2011 at 8:54pm
Aw I'm so sorry! I went through this a couple of years ago and did a post.. linky.. ours was bad but there are some stories in there from people who have it or know people with it that may help?

FX its not severe!
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Shelt View Drop Down
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Joined: 17 May 2008
Location: Tauranga
Points: 1181 		Post Options Post Options   Thanks (0) Thanks(0)   Quote Shelt Quote  Post ReplyReply Direct Link To This Post Posted: 08 April 2011 at 1:34pm
I don't have any helpful advice but I just wanted to say that I'm sorry you are having to go through this again
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susieq View Drop Down
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Joined: 01 January 1900
Location: Howick/Auckland
Points: 3771 		Post Options Post Options   Thanks (0) Thanks(0)   Quote susieq Quote  Post ReplyReply Direct Link To This Post Posted: 10 April 2011 at 8:35am
my thoughts are with you. I know a wonderful spina bifida girl who would be 28 she can walk, sometimes is in a wheelchair but is very bright.
hope all goes well for you
susie
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AbzandH View Drop Down
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Points: 1127 		Post Options Post Options   Thanks (0) Thanks(0)   Quote AbzandH Quote  Post ReplyReply Direct Link To This Post Posted: 10 April 2011 at 8:47am
Huge huge hugs. I have a cousin who is 26 with spina bifida, she has other health issues too but generally goes about her every day life as we all do. She is very small for her age and pudgy, has probably the mind/maturity of a 15-16 yr old but works at the local high school in admin. She is awesome, so funny and such a straight shooter. I'm not sure if her health issues are as a result of the spina bifida (kidney problems, has a catheter full time) but other than that an a serious attitude she's doing just great! Lives in a shared home with other IHC and has full time minders there. She still goes out on a friday night and has a great time.

Just wanted to say, as much as it is a hard road, these ailments don't stop people from living a happy long life, she was given till 14 to live and is doing so so well.

Feel free to PM me, I don't know much other than what I see of her, but she definitely never dwells on it :) xxx
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HuntersMama View Drop Down
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Joined: 09 November 2008
Location: Auckland
Points: 1863 		Post Options Post Options   Thanks (0) Thanks(0)   Quote HuntersMama Quote  Post ReplyReply Direct Link To This Post Posted: 12 April 2011 at 8:24pm
So sorry to hear that

Im an OT and worked with children with spina bifida a few years ago and they were just awesome! In terms of their physical abilities, they were varied - some could walk/run and you could barely tell there was anything wrong and some were in a wheelchair. I didnt notice any cognitive impairment, in fact some were more intelligent than any other child.

There is alot of support out there so make the most of it.

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Georgiegirl View Drop Down
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Joined: 04 June 2009
Location: Ramarama Auckland
Points: 496 		Post Options Post Options   Thanks (0) Thanks(0)   Quote Georgiegirl Quote  Post ReplyReply Direct Link To This Post Posted: 14 April 2011 at 10:06am
Sorry to hear that, I feel your pain.
All I can say, is search out people in your life that are a strong support. And look after yourself... I know you probably can't see past this right now. But as time goes by the lows aren't so low anymore.
I have a little girl who is Severely handicapped so I know that pain you are feeling.
People will say that DUMBEST things, what I would do is have an Ally McBeal moment... and imagine slapping them!

Just remember you don't have to be strong. its ok to feel.

Let us know how you get on.



TTC#2
8th round of clomid 100mg
1 failed IUI.
Waiting for IVF now.
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