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  1. #1
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    Default Currarino syndrome baby

    Hi there,
    Am wondering if anyone's had a baby born with Currarino
    syndrome? I have it and my baby was born with it but in a more severe form. I'd be grateful if you shared your stories... I'm having a really hard time coping with the diagnosis and am feeling so sad for my baby's future.

  2. #2
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    Hi there...
    Just thought id touch base... my daughter has currently been diagnosed woth currarino syndrome. Have been struggling with her symptoms and finding a diagnosis since she was born in 2013. Was wondering how you have come along with your little one?

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    Hi isaevette86,
    So good to make contact - apologies for the delay in replying. How is your daughter? How are you? It has been a challenging, stressful three years... DD's had three surgeries - 1) colostomy 2) untethering of spinal cord and creating a new anus 3) colostomy reversal. Constipation is currently our biggest issue. I fear continence will also be an issue
    We are nowhere near toilet training... How are things with you?
    I must admit, even after three years, the devastation re. DD's diagnosis still remains....
    Last edited by Eazy; 26-01-2016 at 20:31.

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    Hi there!!
    Its definatey a real process!! Iv found a group on fb, not sure if you are on there or not but iv found talking to all these other people going through it either themselves or with their child has really helped me process it all and not feel so alone. Toilet training is tricky enough without the added issues, we have left it at this point because dd is going in for her surgeries in 2 weeks, i just thought id rather just hold off till its done then deal with it rather then having major regressions. How long ago did your lo have her colostomy closed?? And did she have the untethering and reconstruction done at once? Im so nervous becausr they are doing the untethering, reconstruction and mass excision all at once... Hang in there!!! I know how exhausting it can be and if you need to chat i am an open book x

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    Hello again isaevette86,
    Yes, the untethering and reconstruction was done all at once. It was a hard day and we didn't expect the surgery to last as long as it did - over six hours. BUT I'm not telling you that to panic you at all, everyone is different. As you would know, it's the handing her over which is heartbreaking. It was such a relief when we were reunited in recovery! Which hospital are you going to?
    DD had her colostomy closed in March 2014 - just before her first birthday.
    I completely understand why you've held toilet training off.
    Good luck for the next surgery. Let me know if you need advice/someone to vent to/reassurance. It's good to make contact with someone who gets it. Which Facebook group do you belong to?
    Good luck! Xx


 

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