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Spina Bifida T11 twin pregnancy

(16 Posts)
poisonberry Wed 06-Jun-18 07:49:33

I found out today nearly in 17th week pregnamcy twins....About bad t11 to sacral Spina bifida at one of our babies. And I'm scared nd concern. No one here will tell us how many cases kids or adults with this level sb actualy lives...in Ireland.even the organizations looking after SB they dont know.. it's very concerning....and terrifying...as those odds wi give as a clue. I read a lot about sacral lumbar level...but no where I can find thoraic SB... it's huge split ...and the chiari and hydro malformation already forming... clubbed feet. I'm looking for help everywhere...here and abroad... that maybe some one will have any better news meaning will be able to give us a clue how life of our little one will look. Will he be able to live...or my decision to give him a birth is selfish...As he will suffer... I'm.sorry for this dreadful thread here... But I hope some one maybe will be the light in the end of tunnel.here
...thank you in advance!

Ivegotfamilyandidrinkcupsoftea Wed 06-Jun-18 07:54:25

Bless you op flowers

I have no advice but couldnt not reply

gummybearsugarkisses Wed 06-Jun-18 08:28:16

I'm so sorry you're going through this  We were faced with an abnormality on our 20 week scan last year which was/is quite rare and nobody could provide outcomes as not many studies have been done (not the diagnosis you have been given). I don't know where you are based but I went to see the professor at the fetal medicine centre in London who is a world renowned fetal medicine specialist to see if we could gain any more information. This is obviously outside of the NHS so we self funded and self referred. Things were a lot clearer with the additional information & I felt better placed to understand the potential outcomes. I know how horrible it is, especially when it's uncertain and you can't get your head around it because there are no definites to process.

poisonberry Wed 06-Jun-18 09:59:56

Do you mind share this specialist name or details I could look for him. I 've contacted many specialists... I hope some one will reply...and I can go to visit them. Thank you for your reply!

QueenAravisOfArchenland Wed 06-Jun-18 10:39:32

Professor Kypros Nicolaides. He practises at Kings College Hospital and also at the Fetal Medicine Centre on Harley Street. He is a world authority on complex multiple pregnancy. I would arrange to speak to him asap, by phone or even email him directly. He can either help or point you in the right direction.

poisonberry Thu 07-Jun-18 07:19:27

Thank you.

poisonberry Sat 16-Jun-18 07:49:13

So ..I met with professor Nikolaides. He told us after scanning our boy that's it's bad and very bad.... hydro already at 12... very wide split for thoracic to sacrum. That he is already paralysed.
And not as a doctor but as human he would suggest selective reduction. I didn't felt relive more stress actualy... do not know why... like the doors to help our boys closing...and nothing I can do.

ReggaetonLente Sat 16-Jun-18 07:50:06

Oh OP. I’m so sorry x

QueenAravisOfArchenland Sat 16-Jun-18 08:18:27

I'm glad you were able to meet with Prof Nicolaides but sorry he had bad news for you. From what I have heard he will do what he can to help you if at all possible. You have some very hard decisions to make. Best wishes x

Chalkitup Sat 16-Jun-18 08:24:04

So sorry you are going through this x

Gizmo2206 Sat 16-Jun-18 08:35:46

Poison berry I’m going to message you if that’s okay

rainbowstardrops Sat 16-Jun-18 08:43:23

I'm so sorry to hear your news thanks

Pepper123123 Sat 16-Jun-18 11:08:10

I thought I'd share my experience.

I don't have children with SB, I have SB myself.

I can't walk at all and use a wheelchair full time.

I have lived a very normal life despite using a wheelchair.
I was taught in mainstream education, I drive, I have a partner, one child and one on the way. I live without the need for a carer.

I am not sure where my paralysis in a medical term, but I have no feeling from the knee down and very little feeling from the knee to my waist.
I have the usual urological issues, but I have self managed those from the age of five.

What I'd like to say is many many people with SB have very fulfilling, happy lives. I'm just one example of that.

poisonberry Thu 21-Jun-18 21:33:49

Thank you for that!

kitty1013 Thu 21-Jun-18 21:38:20

@Pepper123123 - your post moved me to tears (in my defence, I am pregnant!!)- but such an eloquent reminder that a disability is no bar to a happy fulfilling life. (Equally obviously have much sympathy for OP going through such a stressful time of uncertainty). Xxx

poisonberry Fri 22-Jun-18 07:08:13

Yes Pepper msg gave me hope. But what i am worried is that my baby won't be able to live happy life... even I will do all in my power he may never be able to have family..job...He may suffer all his life... As his level of SB is bad...hydro already 14...met many doctors professors Neuro... I read many research papers..I called to many specialists all over the world... I do not want to go ahead with selective termination option... but I am worry that this is selfish and here there is no space for selfishness... I don't mind his disability that's not a problem for me I would gave him a star from a sky to make his life best ever....but I'm worry that he will suffer and my choice will be the reason for it ...thats why im waiting...looking after my babies giving them best I can while there still in me... And I pray that by 34week it will show it's not bad...

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