Spina Bifida

Discussion in 'Special Needs Support' started by <3 torz, Sep 3, 2009.

  1. <3 torz

    <3 torz Mum of one.

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    Hi,

    I hope you can help me. Ot could be a long post so, here goes:

    My husband's sister recently had a baby (23rd June). When he was born the paediatrician mentioned a sacral dimple. Neither baby's Mum or Grandma realised the importance of this and didn't think there was any relevance to it. Since then, her health visitor has told her that she is 'keeping an eye on it' but still no-one asked any questions. When taking him for his jabs, the doctor asked her to come back so he could have a look at the dimple when he hadn't just had his jabs and was so beside himself. An appointment was made and the doctor queried about his bowel and bladder function, strength of his legs etc and then finally mentioed spina bifida. An appointment is due in just under 2 weeks with a specialist. There are a few questions I would like to ask on her behalf if possible and then carry on the story;

    Why would a doctor do injections? My Health Visitor did my Lo's and always has. Would it likely be that they were monitoring the dimple and there was a noticeable change?

    Is there any first impressions any of you have about the dimple and the likelihood of Spina Bifida? Baby is constipated quite regularly, isn't particularly holding his head up very steady (although he isn't like a newborn) but can kick his legs.

    What information can I tell her in the interim about Spina Bifida diagnosis, prognosis, treatment etc?

    The further information that I mentioned concerns my husband - at the base of his spine is, what looks like a hole covered by a wet-looking scab and there are tiny pin-prick holes lower down that leak pus and the lump (beneath the hole) is sometimes painful. He has been told it is an anal fissure but, I know it isn't (I work in nursing and have experience with them) so, could this be Spina Bifida? Other than what I have mentioned, there are no other problems with my husband whatsoever that could be linked to Spina BIfida as far as I am aware. COuld it be linked to baby's dimple?

    I hope you don't mind helping, thank you all in advance. I am seeing her tomorrow and I speak to her regularly; she is a single mum with not much support and she seems to rely on me quite a bit, I don't know too much about it so I want to be able to help just a little.

    Thank you,

    Victoria.
     
  2. Emmylou27

    Emmylou27 Well-Known Member

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    Hi Victoria

    A good starting point would be http://www.asbah.org/Spina+Bifida/in...idaocculta.htm as this explains things well.

    My daughter has Spina Bifida - Myelomeningocele - which is the most serious form. It wasn't detected until after she was born and so was a shock to say the least. However, she is doing really, really well. Her back was closed at 24 hours old (it was an open leison) and since then she's gone from strength to strength. Her consultants are confident she'll walk and run, her bladder and kidney scans have all come back normal etc. Her left foot sticks out a little but that can be fixed and her leg movement is normal - she kicks all over the place. She is 5 months old and starting to sit and her head control is great.

    The reason I'm telling you all this is because if your sister in laws child does have Spina Bifida it sounds like it will be the Occulta type. Although it sounds horrifying and it is scary it's not the end of the world. We were told on day one that Daisy probably wouldn't walk and now it looks like she will fine. If it is Spina Bifida there is no reason why her child won't continue to develop well and walk, run and do everything else a 'normal' child can do. If the baby is kicking then there is obviously leg movement and feeling which means they should walk - is there feeling right down to the toes?

    There may be complications - a common one can be issues with bladder and bowel control, although, again, there are many things that can be done to help depending on what the problems are - eg. Daisy currently doesn't need anything although I guess this may change in the future and she may need catherterising(sp?) etc. I would have thought that once diagnosed scans will be arranged (possibly an MRI) on the spine to see where the damage is and the extent. Your sister in law's baby will probably have meetings with neuro-consultants (for the spine), orthopedic consultants (for the movement) and urologists (for any bladder / bowel things). The orthopedic consultant may want to do a hip and leg ultrasound to check for any issues. We also have a physio who comes to see Daisy every month or so. Daisy has also had a renal and DMSA scan to check kidney and bladder function. I presume this baby, although constipated sometimes can 'go' on his own and also doesn't constantly 'leak'?

    As for your husband's concerns, yes, I guess it could be Spina Bifida Occulta but you'll see from the link above that people can have this and never know about it. It may be linked to his sister's baby's possible Spina Bifida; although unfortunatly there may be no reason why her child possibly has it - sometimes, despite doing everything you're supposed to, it just happens.

    I hope this is of some help... I'm no expert by any means, this is proving to be a massive learning curve for my husband and I and I'm sure some of the info here won't be relevant. If you need anything else, just shout.

    :hugs::hugs::hugs::hugs: to your sister in law, your husband and you - hope everything's ok.
     
  3. <3 torz

    <3 torz Mum of one.

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    Thank you so much, I appreciate the help and I'll go on the link now and have a look. I really want to help as much as I can, just being able to tell her some information is vital so, I really do appreciate that you have taken time out to help me and her. My SIL is finding life hard at the moment and now this; I just hope the paediatrician's appointment is swift and helpful and, yes I do hope it isn't serious - I spoke to a friend yesterday, a children's nurse - and she also was very helpful.

    Daisy sounds like she is doing well, you too! I can't imagine how you felt when you were told about the spina bifida but, as much as you may not want to hear this I admire how well you are coping and how strong you all are, I hope my SIL is strong and that I can help her enough. I wish she had more support but, in the meantime, I can arm her with as much information (and PMA!) as possible.

    As for my husband, I've told him to go to the doctors to have it checked again. I have read that it is more prominent if it is passed down so, selfishly, whilst we are trying to conceive our second, I would like to know the risks. It would also help in my SILs situation because she will see how her brother has a perfectly normal life with no problems whatsoever (apart from a nagging wife!).

    Baby wees quite normally, the only bowel problem is the constipation. I suppose the older he gets, the more they will find out?

    Thank you again, so much x
     
  4. Emmea12uk

    Emmea12uk The Folic acid police!

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    As for the baby, I hAve spina bifida occulta, which is characterised by a dimple in the sacrum. This nearly always does not do any harm. I have a facebookgroup for parents of babies and young children with Sb called spina bifida and hydrocephalus parenting support . There are loads of families on there to offer real life support.

    At this stage, she should not be too concerned.
     
  5. Emmea12uk

    Emmea12uk The Folic acid police!

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    My son has sb the same as emma's daughter. This is totally different and far more serious than occulta. A baby with occulta sb won't have bowel and bladder problems or movement problems.

    As for your husband, go back to the doctor as it is very common for men to get a hair folical ingrow into the sacrum and cause a very nasty infection. Very easy to treat, sometimes requires minor op to remove it. It sounds just like it though

    Good luck!
     
  6. Emmea12uk

    Emmea12uk The Folic acid police!

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  7. ~KACI~

    ~KACI~ Well-Known Member

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    Hi sorry don't know anything about the Spina Bifida, but with regards to your husband and what your describing i think Emma could be right:)

    http://en.wikipedia.org/wiki/Pilonidal_cyst

    This may be of some help, my OH had one and had his operation in april this should hopefully put a stop to a reacurring problem, although the op is rather minor the recovery time can be long, my OH had to see a nurse everyday for 3months:shock:
    Best bet is a trip to the doctors:)

    Hope you finds some answers with all your questions :)
     
  8. <3 torz

    <3 torz Mum of one.

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    Thankyou all so much, I will pass on all information asap, thanx xx
     

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