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Anyone pregnant with special needs baby

daisygrl8423daisygrl8423 member
in Special Needs
we recently had doctors tell us our daughter had excess fluid on the brain hydrocephalus due to aqueductal stenosis. Her condition is pretty severe. I am not due until September... Is there a board for moms pregnant with special needs babies or is this board for both moms of unborn and born special needs kids? Anyone have a child with this condition?
BFP 6-29-10; EDD 3-10-10; Missed MC @ 10wks on 8-12-10; D&C 8-13-10
BFP 11-24-10; EDD 8-5-10; CP @ 4wks on 11-27-10
BFP 12-22-10; EDD 9-2-11 Baby girl born Aug. 15, 2011 via emergency c-section
BFP 9-5-12; EDD 5-20-13; Missed MC @ 8 wks on 10-9-12; D&C 10-10-12
BFP 1-7-13; EDD 9-20-13; PRAYING WE GET TO BRING THIS BABY HOME! BabyFetus Ticker BabyFruit Ticker
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Re: Anyone pregnant with special needs baby

  • daisygrl8423daisygrl8423 member
    Great! I have lurked at the high risk board some but most all those ladies are on bed rest and have high risk pregnancies, not babies with special needs. I think I will hang out here for now!
    BFP 6-29-10; EDD 3-10-10; Missed MC @ 10wks on 8-12-10; D&C 8-13-10
    BFP 11-24-10; EDD 8-5-10; CP @ 4wks on 11-27-10
    BFP 12-22-10; EDD 9-2-11 Baby girl born Aug. 15, 2011 via emergency c-section
    BFP 9-5-12; EDD 5-20-13; Missed MC @ 8 wks on 10-9-12; D&C 10-10-12
    BFP 1-7-13; EDD 9-20-13; PRAYING WE GET TO BRING THIS BABY HOME! BabyFetus Ticker BabyFruit Ticker
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  • zoeyandsummersmomzoeyandsummersmom member

    image-auntie-:
    There's a high risk pregnancy board, but you are also welcome here. We're the best club you never wanted to join.

    Welcome. This is a fantastic group of women/moms with great advice. Babycenter tends to have very specialized boards including one on your son's condition: https://community.babycenter.com/groups/a20855/hydrocephalus  where you may be able to get more specifics.

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  • S-TunaS-Tuna member
    Hi! I don't post here very often, but my son (22 months) was prenatally diagnosed with some brain conditions. I remember feeling the same way as you in regards to not knowing which board would best fit my needs. This board is amazing! I also lurked the preemies board for a while because I knew I would be a NICU mama going into my son's birth. The people here are full of knowledge and support. Good luck on the rest of your pregnancy! We're here if ya need us. 
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  • ToastieSimonsToastieSimons member

    Congrats on your baby!  My DS1 was diagnosed with microcephaly in utero at 36 weeks.  The doctors kept saying that his head was just too far engaged to measure and that he was fine.  

    Well, he wasn't.  He has a genetic mutation that causes microcephaly and ended up in the NICU till 12 days old.   

    This board is amazing and has been such a help through everything.  My DS2 has the same genetic issue so I was recently pregnant with a child with a genetic issue.   

    To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
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  • laurdinglaurding member

    DD was diagnosed with hydrocephalus in utero and we were told that this was the worst case the doctor had ever seen.  We got a different doctor and they downgraded her to ventriculomegaly, which is a milder version.  What really helped me was meeting with a neurosurgeon that told us it doesn't matter what her vents measured in utero, but rather when she is born.  You will hear lots of numbers and opinions, but they don't know for sure.

    is there a children's hospital close to you?  That might be a helpful resource.  Also fetalhydrocephalus.com  is a great website created by a hydro mom.  Please feel free to pm me with any questions! 

    Baby Birthday Ticker Ticker
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  • Ginlyn0Ginlyn0 member
    My youngest stepson has hydrocephalus. He has not required any surgeries because it was not severe but he is monitored yearly by a neurologist to check for changes in the amount of fluid. He has also developed arachnoid cysts (three) which they are also watching closely. From what I understand these can be fairly common in someone with hydrocephalus. His does have a larger head for his age but it's not obvious unless you were fitting him for a hat. Although when he was younger, it was much more obvious and he has been wearing adult hats since he was 4 because youth hats just don't fit him.
    DD(14),SD(13),SS(11),SS(9),DS(3)

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  • Nrios002Nrios002 member
    Hello,

    I am due in Oct. and my baby has been diagnosed with a brain and heart issue. His vermis is only partially developed in the brain and he has tetralogy of fallot heart defect. He will need open heart surgery soon after birth. I would love to chat with you and share experiences. My thoughts and prayers are with you as I am going through this myself and know how scary and emotional it can be!
    BabyFruit Ticker
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  • Jenny952Jenny952 member

    Hi, I'm not pg, my DD is 18 months old and she has hydrocephalus.  Hers comes with her spina bifida diagnosis, but she has a VP programmable shunt that she had placed at 3 weeks old.  She has had 1 shunt revision just after she turned 1.  Her ventricles were measuring large throughout my pregnancy and we knew a shunt was inevitable.  But thankfully her hydro has not affected her cognitive abilities one bit.  She is a very smart, intelligent and funny little girl, measuring at or ahead of all her milestones!

    I'm not familiar with DD's diagnosis, but I do know that you need to get yourself to a pediatric neurosurgeon.  Where are you?  Hydrocephalus is very common with spina bifida, and the n/s is the best person to talk to.  I found that my OB was very uneducated on SB and gave me some pretty outdated information and it wasn't until I got to a n/s that I got a more clear picture of her condition.  

    I'm so sorry you had to get this news.  It's not fun to get bad news at your anatomy scan.  Feel free to PM if you want any more information. 

    Lilypie Second Birthday tickers

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  • IsalupupIsalupup member

    Hi, my son developed hydrocephalus from an IVH (a bleed in a ventricle of his brain).  The hydrocephalus developed when he was three months of age so I understand this is a bit different than your situation.  His head circumference increased, he became cranky and his eyes began to sundown.  We took him to the children?s hospital where he received a VP shunt.  I don?t know the course of treatment you will be getting a shunt or a third ventriculostomy (this was not an option for us because of the bleed). My advice for now is to find a good Neurosurgeon possibly at a children?s hospital.  My son (now 2 1/2) needs PT because he has gross motor delays but he is doing very well.  We have not yet had any shunt malfunctions or failures.  When you are shopping for cute baby clothing, look for items that snap down the front or are otherwise easy to get over your baby?s head.  I really like the gap bundlers (nightgowns that have snaps down the front).  After my sons surgery we used a boppy lounger to keep him comfortable.  I liked that it supported his head and raised his legs a bit to take pressure of his abdomen where his stitches were.  I apologize if this is scattered information I was just jotting down some thoughts for you.  If you have specific questions I will gladly answer what I can.

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