I Have Occipital Encephalocele

Occipital Encephalocele anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Occipital Encephalocele. You're not alone. 7 People

    My Story

    I am a 26 year old woman who was born with an occipital encephalocele/meningocele and Dandy Walker Syndrome. I also have hydrocephalus. I have written a blog telling my entire story for anyone who wants to know all the details. This thing isn't letting me post a direct link to my...
    Calliope13 Calliope13
    26-30, F
    Jul 25, 2011

    Madison Renee

    On November 11, 2008 my husband and I found out we were pregnant. We were so excited, we had already lost a baby in May from miscarriage. February 24, 2009 was the day we were going to find out if it was a girl or a boy!! A day that is suppose to be so exciting turned out to...
    26-30, F
    8 Responses Nov 3, 2009

    Miracle Baby

     I found out in sept. 2008 I was pregnant.  I was very scared this was my 7th time being pregnant and I 2 wonderful lil boys and I had a lil girl in 06 that was still born she had ancephalocele.  My other 3 pregnancies ended with a miscarriage.  I had an...
    veryluckymommy veryluckymommy
    26-30, F
    6 Responses Mar 11, 2010

    Hi, my name is Eunice!

    My son was born with occipital encephalacele, however in his case he didn't have skin covering his exposure! He was given 15 days to live due to the open wound possibly generating sepsis! We fought long and hard right a long our son and found a neurosurgeon who excised the...
    Eunicefelici Eunicefelici
    Jan 11

    I Got My Angel Now Xxxx

    i had just got married at 19 and decided i wanted a baby.i had it all planned.where id yake him/her what theyd wear everything.so when i found out about 2 months later i was expecting i was so excited as you all probebly know the feeling i wont go ontoo much.the prgnancy was...
    melissasangel melissasangel
    18-21, F
    4 Responses Apr 21, 2010
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