I Have a Daughter With Agenesis of Corpus Collosum

Personal Stories, Advice, and Support 86 People

    My Youngest Has Acc

    It was Christmas 1999 when I received a phone call from Dr. Lubarsky. “I’m sure it is nothing, but I wanted to let you know that there was an anomaly in Caitlin’s Ultrasound today. It seems her ventricles in the cerebral cortex are dilated.” The words...
    ldybth ldybth
    36-40, F
    8 Responses Nov 2, 2007

    One Month To Go

    Our story was a real shocker for us, and leaves us with more questions than answers. We feel, however, that we are blessed and could not love our child any more than we already do. It started out pretty normal really. Despite two trimesters of getting sick and suffering from...
    balverts balverts
    46-50, M
    5 Responses May 28, 2013

    4th Birthday And Going Well

    Dear All I actually have to confess that I feel somewhat sceptical about even posting but I think as encouragement for those like Melly1019 & Mackenziesmommy 's angst is what has tilted me to tell our story so far.... I have no idea what you have found out or what you will...
    LilisesDad LilisesDad
    2 Responses Mar 25, 2013


    Thank you for sharing your stories. I am so scared of whats to come. I am 36 weeks pregnant with our second child and up until 6 weeks ago everything seemed to be perfect as the doctors said from my ultrasounds. Then we were referred to a high risk because her ventricles were...
    Melly1019 Melly1019
    26-30, F
    5 Responses Jan 27, 2013

    Our 8 Year Old Daughter

    I have a daughter with complete agenesis of the corpus callosum.   We knew early on that Jessica had ACC, we didn't  know at the time whether it was partial or complete.  I still do not claim to know everything about ACC, and I don't dwell on why.  I do...
    mtnbiker45310 mtnbiker45310
    46-50, M
    9 Responses Aug 14, 2008

    My Little Angel

    My 1 year old daughter has just been diagnosed with agenesis of the corpus collosum.  Since I don't even speak medical terms, it basically means that the part of the brain that joins the left and right side never formed in the womb.  It is very rare and little is known...
    mattysmom mattysmom
    26-30, F
    14 Responses Oct 24, 2007

    I am a daughter with partial aGenesis of the

    corpus Colossom and I am almost 34 years old My mother found out while I was in utero Extensive scans were done when I was eight they gave me too much sleeping medicine and I slept for a week More neurological testing's to make sure that when I woke up I was OK the doctors...
    Aloha2erhz Aloha2erhz
    31-35, F
    1 Response Jan 19, 2016

    Our 31 Year Old Daughter Has Acc

    We have a wonderful daughter who was diagnosed with Agenesis of the Corpus Callosum at around 2 1/2 years of age. Back then, there was practically no information on the subject. The doctors told me that I'd be writing the book on this one. Unfortunately, I had no time for...
    lakevue lakevue
    Sep 13, 2010

    I Do Not...

    I am joining this group, not because I have a child with this medical issue, but because I want to support those who do...especially mattymom.
    ColorMeReal ColorMeReal
    41-45, F
    Oct 25, 2007

    Mackenzie'S Story So Far...

    Hi Everyone! Some of you may be a little familiar with my story from a few months ago. My baby girl was diagnosed with ACC or Agenesis of the Corpus Callosum at 19 weeks gestation. Needless to say that was a really really tough time for me because no one wants to hear that...
    Mackenziesmommy Mackenziesmommy
    3 Responses May 14, 2013

    At 19 Year Old, Found Out I Had Acc

    I will start at the begining. When I was born I was born with a cleft palate. Then when I was in Kindergarten my teacher along with my parents noticed that I had a hard tim hearing. I went to a specialist and got hearing aids. Then in 1st grade I got glasses and had my 1st...
    ktyoung05 ktyoung05
    26-30, F
    1 Response Jan 13, 2012

    My daughter is 6 years old.

    I started her in Kindergarten 2 weeks after she turned 5 (she had done very well in Preschool for two years). Her first year of K she started having issues with multi-tasking, listening, comprehending and occasional potty accidents on the floor. I took her back to the neuro...
    kjreitz kjreitz
    36-40, F
    3 Responses Nov 23, 2014

    I am the daughter ...

    . Why is it people run away when you say you're disabled when you say you don't drive and I don't give you a chance to explain ;( not doing well tonight good night y'all
    Aloha2erhz Aloha2erhz
    31-35, F
    Jan 23, 2016

    I Have Four Dc Two of Whom Are Missing Their Cc

    i have a daughter with acc, i also have a sone with acc. our son is 4 and our daughter is 8 months. we also have a seven and two year old. i dont know what else to share i am so shocked that it has happend again. i was told this was a rare thing and not to worry it wouldnt happen...
    frog99701 frog99701
    26-30, F
    Jan 16, 2008

    22 Weeks Pregnant Doc Says Absent Corpus Collosum

    I'm 22 weeks pregnant with a baby girl. When I was about 19 weeks my doc did a sono and he couldn't locate the corpus collosum...He told me this might indicate Downs Syndrome. At this point i'm a mess!!! He does the amnio right away, because some blood work I had done showed that...
    Mackenziesmommy Mackenziesmommy
    2 Responses Dec 27, 2012

    My Son Has Acc...but He Doesn't Let It Stop Him!

    When my son was 7 years old he started having headaches on the left side of his head, always in the same spot. He started having problems with his legs hurting all the time..I told him it was "growing pains". He started have bladder and bowel problems (accidents). I...
    Tam707 Tam707
    3 Responses Jun 9, 2009

    False Diagnosis

    My 3rd son, now 14 years old is profoundly disabled both physically and mentally. He is severe CP and also has epilepsy which is being controlled by 2 drugs. At 7 months old he underwent a CT scan and we were told by his paediatrician that the radioligist who performed the...
    Drumraymond Drumraymond
    4 Responses Nov 22, 2008

    No One Expected...

    My daughter is five years old now and we just recently found out that she has Agenesis of Corpus Collosum.  She started having nighttime seizures when she was about two months old and every doctor we took her to said that they couldn't see a problem and pretty much treated...
    kristyeischen kristyeischen
    1 Response Sep 29, 2008

    Question About Feeding My Son With Acc

    My 11 month old son was formally diagnosed with ACC shortly after birth while spending a month in the NICU at Children's Hospital in Boston. We knew during my pregnancy that he might have ACC so we were a little prepared in what might happen. He is extremely delayed. He doesn't...
    RyGuysMom RyGuysMom
    31-35, F
    2 Responses Apr 30, 2012

    My 3 Year Old Daughter Also Has Acc

    Sitting here reading the stories posted by mothers who have children diagnosed with Agenesis of the Corpus Collosum really touched my heart. Sometimes I feel that I'm the only person who has heard of this disorder. My daughter was diagnosed with ACC during a routine ultrasound. I...
    Tonya30 Tonya30
    26-30, F
    2 Responses Mar 19, 2009

    Dear Friends

    my name is rosemary. and my daughter emarie, who is almost three years old. was born with an absent corpus collosum. my pregnancy was normal. even though she doesn't walk, talk or crawl yet. i still have hope, she will someday. my husband and I still haven't heard her say mommy...
    MsArtemis87 MsArtemis87
    22-25, F
    1 Response Aug 24, 2012

    9-11-01 Changed Our Lives More Than Just From The Bombings

    On 9/11/2001 we also found out that our Daughter was going to have some type of brain issues.  I was approx 24 weeks pregnant.  The diagnosis of possible ACC came after a MRI done on me while pregnant.  confirmed after Aurora's birth.  when the specialist...
    MomofAurora MomofAurora
    36-40, F
    3 Responses May 10, 2010

    20 and Pregnant-how Do I Handle This?

    February of 1999, I found out that I was 8 weeks pregnant, I was overcome with joy. March of 1999, went for my regular routine check up, and two days later, I was back into the clinic due to abnormal results on my blood work. Went to genetics counseling, no one could tell me...
    scooby79 scooby79
    26-30, F
    1 Response Apr 15, 2008

    Kayleigh's Story

    My first pregnancy was, without a doubt, the most life-altering and humbling experience of my life. I think that most people take for granted that they will have a healthy child and a safe pregnancy. Unfortunately, neither were true for me. The first 20 weeks of my...
    cntmeyer cntmeyer
    26-30, F
    5 Responses Mar 28, 2009

    Finding Out Was Hard

    We found out that our two month old daughter had agenesis of the corpus callosum around two weeks ago. She was in the hospital for an unspecified swelling on her cheek which turned out to be a hemangioma. She had to have an MRI requiring sedation to assess the situation. She did...
    harris731 harris731
    Oct 20, 2011

    My Son 13 Has Agenesis Of Corpus Collosum

    Long Story short....He was born with 1/2 a brain, had a shunt placed at 1 month and had early intervention, therapy and has had an IEP all these years. Right now at 13, he has a cyst in the middle of his head which prevents the corpus collosum from existing. If you met him, you...
    dempsey0427 dempsey0427
    1 Response Oct 19, 2011

    I Have A Daughter With Agenesis Of The Corpus Collosum

    nking1508 nking1508
    1 Response Oct 6, 2010

    My Girl By The Support Worker

    Hi, i.m a support worker who is looking after a girl with agenesis of the corpus callosum, I think she is absolutley fabulous and has so much potential as in the last 6 months i have taught her sounds and i have taught her if she nips or kicks or hits there are consequences to...
    Jan 30, 2013

    My Baby Escaped From Agenesis Of Corpus Collosum

    Dear friends! Here, I have to share with you a wonderful experience occurred in my life. My name is Jose and I am an Engineer. My wife is Jerry and she is Asst. Professor in an EngineeringCollege. We got married on 15th May, 2008. When my wife conceived in the 5th month after...
    6 Responses Jul 20, 2011

    My Best Friend

    My best has no or very little corpus collosum. We have been friends since 9th grade. Our families have been close since 10th grade. I never knew until today there was a name for what he has. We are now 38+39. We have both struggled all our lives with disabilities,but they have...
    rpipergirl rpipergirl
    36-40, F
    Aug 9, 2012

    My 3 Yo Has Complete Acc

    when i was roughly 6 months pregnant we were sent to morgantown, wv to be followed at the high risk ob unit there. now this being my 3rd pregnancy and 2nd child i was already scared from the lost of our first child from miscarriage... i didnt know what to think, what was going...
    aiden2009 aiden2009
    26-30, F
    Dec 15, 2012
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