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June 2015 Moms
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Hyrdocephalus

stbmrsgriggsstbmrsgriggs member
in June 2015 Moms
Hi everyone,

We just found out that our little boy has hydrocephalus and will require brain surgery right after his birth. My husband and I have been combing the internet for information, and it's pretty clear that outcomes are totally across the board.  If anyone has any personal knowledge/experience with this, we'd really appreciate any info you can provide.  We know that there's no prevention, nothing can be done until birth, and results can vary from minimal difficulties following the surgery to potentially fatal results.  This disorder apparently hits 1 out of 500, so although rare, it's much more common than we realized.  Any info/good thoughts/prayers are greatly appreciated!

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Re: Hyrdocephalus

  • casey06022015casey06022015 member
    No experience but prayers for you and little one!!!! <3
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  • karaelaine1991karaelaine1991 member
    I have no info, but will keep you all in my prayers!
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  • amabarneamabarne member
    Sorry no experience but y'all will be in my thoughts and prayers!
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  • KaLikeAWindKaLikeAWind member
    Sorry no experience here either, but sending good vibes and hopes your family's way
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  • tdotson0722tdotson0722 member
    @stbmrsgriggs I actually have hydrocephalus. I was born 2 weeks early because of it. I got a shunt placement in when I was 7 weeks old. Surgery was a success. I am almost 28 years old and never ever had a problem with it. I still have the shunt in me. People can become shunt independent and not need it when they get older. What state do you live in? Any questions don't hesitate to ask me and I'll try and help you! Prayers to your family!
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  • amsargent08amsargent08 member
    My younger brother had a stroke when he was a week old and suffered from hydrocephalus and traumatic brain injury. He had a shunt put in at the time and is now 15 years old and healthy! He does have to be monitored by his neurologist to check that everything is working well. Although it may be hard to see the positive, be glad that it has been diagnosed now and could prevent future complications. Prayers sent your way!
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  • henrytviiihenrytviii member
    I am so glad your have a few positive stories to look to here. We had this as a potential diagnosis early in pregnancy. At our NT scan it looked like we might be dealing with a severe case of hydrocephalus and a non-viable pregnancy. By 15 weeks it looked like a more mild to moderate case. I did the internet research and was devastated at first but then came across many positive stories like these. It was a hard 10-12 weeks while we waited it out because there was nothing we could do, and no way to determine the outcome for our child. Our perinatologist was very clear that the fluid levels don't necessarily correlate with outcome so it's very hard to predict how the condition with affect each child. Though he also stressed that many people lead perfectly normal lives with a shunt keeping fluid levels under control. This is what I found so challenging and stressful. My husband dealt with it much better, taking more of one day at time approach and choosing to be hopeful. At subsequent follow-ups the fluid levels in our baby boy's brain have returned to normal levels so we will just have some extra checks after birth. I just wanted to express support and let you know you are not alone. I hope that the surgery goes well, you & your family will be in my thoughts.
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  • taboullio84taboullio84 member
    My cousin was born with it. He had the shunt put in. After years it detached but never caused an issue. ( he no longer needed it) he is normal in every single way with no further issues. <3 prayers sent your way.
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  • stbmrsgriggsstbmrsgriggs member
    Oh my gosh everyone, thank you for the overwhelming support!! I'm crying at my desk right now I'm so touched.  It's wonderful to hear some positive stories because like you all said, you read nothing but horror stories online and the doctors aren't so forthcoming with information.

    @tdotson0722 I'm so glad to hear your story and that you're doing so well!  I live in San Diego so my medical team is a combination of Scripps Institute & UCSD doctors.  I know I'm fortunate to live here b/c our children's hospital is ranked well nationwide, so I'm hoping this will result in great care.  We've found that Seattle, Boston, and Philadelphia seem to offer the best care for this specific disorder, and I have family in Philadelphia, so we are looking into possibly going with that option if we're not happy with Rady's San Diego.  Where did you receive your treatment?

    @amsargent08 I'm so sorry your brother went through all of that and its wonderful to hear that he is so healthy!! I've read horror stories that additional issues along with this pretty much guarantee tragic results, but its refreshing to hear that's not always the case.

    @henrytviii Thank you so much for sharing your story and it really mirrors how we feel right now.  Its comforting to hear that the levels don't correlate to outcomes, which I actually didn't realize.  We just received this diagnosis a few days ago, so our perinatologist is hesitant to give concrete information, which is killing me.  I've contacted our pediatrician to set up a plan and requested that my OB set up a meeting with the pediatric neurologist he works with.  I know we'll meet with the neurosurgeon team, but that'll be orchestrated through the perinatologist so I don't know what else I can do at this point.  I feel so helpless and as someone who is such a planner, it's killing me.  My husband has been very strong for me, but I know he's a mess when I'm not around.`  Thanks again for sharing and it really helps to hear your story.

    Thank you everyone for the prayers and I hope you all have happy, healthy little babies:)
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  • cbrtncanadiancbrtncanadian member
    Wishing you and baby all the best and a positive outcome and procedure!
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  • tdotson0722tdotson0722 member
    @stbmrsgriggs I live near Washington DC and the doctor that put in my shunt still practices. I would like to meet him one day. He's getting old but he's awesome! His name is Ronald Uscinski. I was born in DC at Georgetown University Hospital.
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  • sashshaksashshak member
    May God bless you and your little one. All will be good. Hugs
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