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HELP.....Spina bifida and hydrocephalus

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SandyClaws Posts: 3108
my niece is due to be born at the end of the month and we have just found out yesterday that she has spina bifida and hydrocephalus. my sis was with the doctor in dublin yesterday and he basically said she will be born monday by section with probable brain damage and paralysis. im just wondering do any other mums have any experience with this. i've been on the sphi websiite but i just want some "real world" advice iykwim?
Dairy Queen Posts: 3707
Sorry I only saw this now, how is your sis and baby doing? My little boy has hydrocephalus and Dandy Walker Syndrome which is a malformation of the brain. We didn't know untill he was 14 months even though it was affected him since birth. He had an operaton last year an Endiscopically inserted ventriloscopy(sp) in his third ventricle. He has been attending Enable Ireland since January and has come on so much since. We aren't happy with him at the moment and are concerned about his head growth so will be going into Temple St in a few weeks for minor op, observation and specialist mri. I can't tell you abything about SB but hydro I know some about. Babies affected with hydro don't like certain textures, they are sensitive to light and VERY sensitive to sounds, well at least DS is. They work on all of these things in Enable by trying to de sensitise him to things he hates. DS never slept through untill his operation as the presure would build up at night and wake him. We use books to prop up his matress and think it helps, could also all be in our minds. It is very hard to come to terms with not having a "normal" child, we were very lucky as we managed to stay oblivious for his whole first year of life. The constant worry is very hard, not knowing when to start stressing about his head as a lot of the symptoms for hydro could be the symtoms for a million other things, like a virus, the terrible two's etc. I only recently came accross the SBHI and found them very good, I have been put in touch with a family supprt worker who is great and really knows her stuff. Let me know if your sister has any questions and I'll try to answer them for her.
SandyClaws Posts: 3108
thanks so much DQ, theyre doing good, baby has had 2 operations, one to close her back, the 2nd to put a shunt in, she has recovered well from these, she has no movement in her legs, but shes the most beautiful little girl! she has had some seizures but theve dont tests and it isnt epilepsy, but it is a bit unnerving when she has one,.. other than that its just wait and see in terms of the brain to see how she is developing and she has to get physio for her legs but other than that shes quite like any other baby :thnk
Dairy Queen Posts: 3707
She'll bring everyone so much joy and will amaze your sister at how strong and capable she is :lvs
katiekelly22 Posts: 5
Hi All, I am the new Educational Officer with Spina Bifida Hydrocephalus Ireland. I just wanted to let you know that our website has a load of information and resources, including a resource called "Hand in Hand- a booklet for new parents". We also have a family support team who are in various areas around the country. The family support team are there to support parents and individuals from diagnosis, birth and throughout the lifespan. The website is www.sbhi.ie so please don't hesitate in contacting any of the staff for information and advice as this is what we are all here for! Best of luck for the future. Katie
wedjul05 Posts: 5673
Hi there, I've just been talking to my DH about a friend of his who is moving to Ireland soon. THey have a 7 year old with spina bifida, to what degree I am not sure. I think he has just physical difficulties and has had 2 major op's this year I think. But as I said, I'm not sure about all the above as it's been years since I saw them anyway. They don't speak alot of English. Would they be just better off contacting the shbi number and going from there? I've no idea about what education he is in at the minute in his own country, what facilities he avails off etc etc. They are going to be literally starting from scratch here and the facilities/services in their own country are great but unfortunately, they have to leave and come to Ireland. Thanks in advance. :wv
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