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Previews begin October 2007. Premieres January 2008.

What Is Agenesis of the Corpus Callosum?
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The corpus callosum — the largest white-matter structure in the brain — connects the left and right hemispheres. Agenesis of the corpus callosum (AgCC) is a condition in which the structure is partly or completely missing, severely limiting integration of left-brain and right-brain function.

AgCC is rare, occurring in just one in 4,000 individuals. It may occur alone or with other cerebral abnormalities. Approximately three to five percent of children diagnosed with neurodevelopmental disabilities have AgCC. Up to 75 percent are male; however, AgCC is also a feature of Aicardi’s syndrome, a severely disabling genetic disorder that occurs almost exclusively in females.

Symptoms of AgCC may range from mild to severe. Children may demonstrate normal intelligence with some compromise in specific skills, or they may be hydrocephalic, have substantial retardation, and suffer seizures and spastic episodes. AgCC is also associated with physical malformations, including midline facial defects.

Neuroanatomically, AgCC will neither improve nor worsen, and it is rarely life threatening. However, it is common to see an increase in symptoms as an individual with AgCC moves from childhood into adolescence. This change is due to their peers’ improvements in skills such as abstract thought and social insight, and their own relative impairments in these areas. Treatment usually consists of learning to deal with specific symptoms and managing seizures if they occur. Although the challenges of living with AgCC are often significant and lifelong, patients are frequently able to lead meaningful and productive lives.

Because AgCC is rare and is associated with a wide and varying range of symptoms, patients frequently are not diagnosed, or they may be incorrectly diagnosed with ADHD, Asperger’s Syndrome, psychiatric disorders, or other disorders. Accurate diagnosis of abnormalities of the corpus callosum, including AgCC, requires a brain scan (preferably an MRI).

Developmental Problems in AgCC

Developmental milestones such as walking, talking, and reading are typically delayed to a varying extent in children with AgCC. Motor skills, especially those involving left-right coordination (for example, swimming or tying shoes) may be a particular challenge. People with AgCC may have heightened sensitivity to some sensory cues such as certain types of touch or food textures, yet they typically have a high tolerance for pain.

Development of young children with AgCC may be similar to that of other children; however, social or problem-solving skills typically do not improve as they go through elementary school. Normally, the corpus callosum matures and becomes more efficient as children approach adolescence, allowing abstract reasoning, problem solving, and socialization to develop rapidly. This does not occur in children with AgCC; consequently, they fall behind their peers mentally and socially as they proceed through their teens and into adulthood.

People with AgCC may be oblivious to the social consequences of their own behavior and typically do not pick up on the social cues of others. They may fail to comprehend jokes or figures of speech, tending instead to interpret communication literally. They are also not as effective as their peers in recognizing emotion in people’s faces, and they are often extremely gullible.

Caring for People with AgCC

Even patients in whom the corpus callosum is totally missing develop a rudimentary compensatory system, providing them with some interaction between the left and right brain hemispheres. Starting a child early with behavioral and cognitive training can help to maximize his or her abilities.

Neuropsychological testing is a necessary tool for evaluating a patient’s cognitive skills. Each patient has unique needs, so it is important to work with teachers, specialists in learning disabilities, and other professionals to develop an Individualized Education Program (IEP). Because of their deficits in social and cognitive skills, patients must be educated about their condition and given consistent direct feedback. Constant repetition is essential for them to learn new material.

It is also very important for caregivers to network with each other. Networking provides a means of sharing ideas and experience, and also establishes a way to coordinate efforts to raise awareness of AgCC throughout the community and health and educational systems.

The National Organization for Disorders of the Corpus Callosum is a nonprofit corporation established in 2002 by professionals, parents, and individuals with corpus callosum disorders. Their mission is to enhance the quality of life and promote opportunities for individuals with disorders of the corpus callosum and raise the profile, understanding, and acceptance of these disorders through research, education, advocacy, and networking.

For more information on AgCC, visit the National Organization for Disorders of the Corpus Callosum Web site at www.nodcc.org.

  • comments (145)
  • Brian B.

    Wow, this is an amazing story! I can’t imaging what it is like to know you have a missing part of your brain, but you can;t do anything about it!

  • Ligia Carle

    My little boy boy was diagnosed at 5 yrs. old with c-ACC. He is doing amazingly well. He is in 5th grade this year. Keeping up with curriculum. Reading above grade
    level.
    Thank you to all of the people involved in this research and getting the word out.

  • Tikatia Morris

    My son is 6 and was diagnosed with c-ACC at one day old! I am so psyched that this is going to be addressed on TV!!!
    We have an ACC awareness website on myspace for anyone who interested in learning more about ACC:
    http://www.myspace.com/ACC_awareness
    Thank you to PBS for including ACC in your show!

  • Minta meara

    Yes reitition is vita for those of us with C-ACC! I feel theatre was my saving grace in life. I reccomend it to any of you parents whose child shoes deficits in memory! It worked for me and I have C-ACC!

  • Deborah Enany

    I have a precious grandson that was diagnosed with ACC before he was born. At 6mos gestation, my daughter had an ultrasound and that is when it was detected.
    He is a sweet beautiful baby, and is doing so well at 14 mos.
    Keep up the wonderful job in your research.

  • Becki Harris

    I have a 6 yr old son who was diagnosed at 1 day old. At my 37 week ultra sound was the first time anyone found anything wrong. We were told we were having a hrydocephalus baby, and went thru hell the last 10 days of pregnancy,with Dr appts, traveling 2 hours to IU med center,etc. I am so glad to see this brought into a public forum. Society in general has never heard of it, so you have to explain it every time. People unknowingly can ask some questions that can be very hurtful to the parents and child. But I know it is purely do to the fact of ignorance about acc. As parents we learn to be our childs biggest advocate.
    Thank you for bringing into the light so to speak!

  • Lindsay Arend

    I am a mom of a 2 year old son with ACC and I want to thank you all for sharing your stories.

  • Susan Durnell

    On behalf of our family and our ACC child, I thank you for this work. Will it be shown soon outside New York? This link is great for sending to friends and relatives who would like to know more.

  • Lariann

    I couldn’t thank you enough for the research done, this web site, and the program! My 8 year old son was diagnosed with P-ACC at age 3. I am passing this site on to friends and family and educators. Is there a way to get a copy of the program that aired in NY? I am very excited that people will become more aware of this dysfunctional brain disorder. Thanks again!

  • Tikatia Morris

    when will this show air? does anybody know? I don’t live in NY, so I want to know when in January is the actual show?

  • ange

    Just found this. Looking forward to people being able to watch and learn. At 32 weeks, my son was also thought to be born w/ hydrocephalus. The day he was born, C-acc was discovered instead. He is almost 8 now!

  • Karen Mock

    My daughter was diagnosed with hydrocehpalus at 28wks, after she was born it was determined she had ACC. She’ll be 7 in 2 days and there’s still so much to learn. My husband and I started seeing some mild facial twitching which we think are seizures so we’re heading back to the docs to get all the necessary check up MRI etc. I’m looking forward to this PBS special.

  • aura kraft

    Is it possible to get a copy of the
    channel 13 special onagenesis of
    the corpus colleseum?

  • Joe Zorskie

    How do people with AGCC respond when asked to describe some unseen object placed in their left hand?

  • Doodee

    Thanks for sharing

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  • Jesspahagolla

    I’d prefer reading in my native language, because my knowledge of your languange is no so well. But it was interesting! Look for some my links:

  • Lynn Paul

    Dear Joe (comment #16) – people with AgCC do not exhibit a disconnection syndrome as seen by the split-brain patients. Thus, a person with AgCC can name an object in their left hand. Best regards, Lynn Paul

  • Kim Hendershot

    Missed the special, is it possible to get a copy of it? My son has C-ACC. Please email response to kkimhen1@aol.com

  • Loretta

    Hello Dr. Paul,
    I live in Toronto, Canada. My son is almost 3 yrs old and he’s quite active. He was diagnosed with ACC. There’s not many resources in my area, not that i know of. I myself am a 34 yrl old individual who had also some learning milestones throughout my life:I dislike math immensely, I dislike changes, I’m a bit isolated and shy. I’m raising my son alone though. I’ve been told i am a great mother. Now…i’m scared of the next stage up, putting him in school. For the time being i take him to a drop-in centre and he goes to speech and language. I know more less what ACC is. The community where i live is not aware of what ACC is though.
    I don’t know how i will confront the obstacles ahead of us. I even have the fear of not being able to protect my son once he’s not under my wing…
    I watched the little video here. I wish there was more i could follow, learn from, and share my experience.

    Thank You for your attention,

    Loretta

  • Lynn Paul

    Dear Loretta and others who have been impacted by a corpus callosum disorder. I recommend that you contact the National Organization for Disorders of the Corpus Callosum (www.nodcc.org). They have an annual conference for families, as well as online discussion boards and a family networking program. This is a great way to learn about AgCC and get support.
    Best regards, Lynn

  • Sarah

    I have a daughter who is 9. She has C-ACC and FAS. I homeschool her. Just looking for anyone out there who is doing the same. Alot of things she does, are hard to put into words. For example, she does alot of talking to herself or actually it sounds as if she is talking to someone who is not there. She does alot of oral stimulation with nonverbal words and laughing. In the last year she has regressed in development. So glad I found this sight. Would love to hear from others.

  • Jesspahagolla

    I’d prefer reading in my native language, because my knowledge of your languange is no so well.

  • Renae

    Hi,

    My daughter was diagnosed with p-ACC. The lining was thinner and the back portion of her CC was missing. She is 4 years old, and has significant delay in some of her gross motor skills and fine motor skills, but she is at least progressing :) She has been in school now for almost a full year and I see so much progress in her social skills as well. I’m so proud of her, and I know that this is not a “death sentence” for her to have a normal meaningful life.

  • Susan Durnell

    To parents and individuals with CC disorders I’d like to recommend the ACC listserv, operated by the University of Maine. It has many members with a wide variety of experiences, and is a great source of information and support.

  • Belinda

    Fascinating. I homeschool my AgCC son also and we have managed to minimize a lot of the socialization problems and maximize learning (compared to what was happening in school), but yes, the constant attending to learning is taxing. I agree that one side of the brain probably recognizes fear, surprise, etc. in faces but that the other side of the brain has no knowledge of this and so the child tells you the wrong answer. My son also seems oblivious to mean-ness in a teacher, for example, and tells me it is okay, even when I have seen the teacher (in this case a music tutor) be significantly rude with him. I think that the part of the brain that controls speech is not aware of the rudeness, but that another part of the brain is fully aware but unable to vocalize it. This would explain why some children with AgCC can gradually slide into depression while vocalizing that everything is alright. Please continue to investigate the possibility that these children are not oblivious to slights and insults but that maybe only the side of the brain that is able to vocalize is oblivious. This would make these children in need of a lot more empathetic treatment than they would outwardly indicate is necessary. Keep up the great work, Dr. Paul. We so need this research.

  • Rita Singleton

    My son is 28 yrs old. He has hydrocephalus, a shunt implanted at age 6. He just had an “episode” and they found his shunt fractured in the c3 area. and revised it. The neurosurgeon told us he had ACC. This is the first time in 23 yrs anyone has every mentioned ACC, or that part of his brain was missing! With all the MRI’s taken over the years, no previous neurosurgeons pointed this out to us. We were saddened but after reading your site information, so many of his behaviors makes sense now.

  • Michele

    My grandson is almost 6 with thin corpus callosum. He is walking with a walker, but does not speak. He puts everything in his mouth. Teachers and therapists report that he understands and knows what is going on. My question is has anyone had a child who begins to speak at a much later time.

  • Mary Sweet

    I am 48 and recently diagnosed with ACC. What adult resources are there for me? I see a lot of resources for young children and adolescents, but not for adults.

  • Sandie

    Mary Sweet,

    If you join the ACC-Listserv you will find other adults with ACC on the e-mail support group. There are also many parents of kids who have ACC as well involved on the Listserv. You can join the ACC-Listserv at the site below:

    http://lists.maine.edu/cgi/wa?SUBED1=acc-l&A=1

    You can also contact the National Organization for Disorders of the Corpus Callosum (NODCC):

    http://www.nodcc.org/

    Lynnea is an adult who has ACC who recently began ACC-Awareness to help create more awareness about ACC:

    http://agenesiscorpuscallosum.blogspot.com/search/label/Adults%20with%20ACC

    Sandie *Mom to 15 year old Matthew with complete ACC*

  • Jim K

    My son is almost 12 and my wife and I are very curious on what awaits him in middle school, high school and adulthood. He was complete ACC. He has had an IEP since age 3 and is starting middle school in 2 months. He plays sports and is a really nice boy but really struggles socially and has a tough time making friends. Can you tell me how life was through school and now way into adulthood. What were you diagnosed with?

  • M.and.M

    I just learned my friend’s 14-y-o son has been diagnosed with having an undeveloped CC. He just started having epileptic fits. It makes so much sense now because he has a hard time picking up nonverbal cues, e.g. when others are in a bad mood. At 14, he’s also socially “innocent” e.g. He can be very “touchy-feely” even when it’s inappropriate. But we love him for his innocence and his trusting approach to life and relationships! He hasn’t done tremendously well in school, but his performance is comparable to that of his peers. Thanks for this forum!

  • dgilbert

    I was diagnosed with P-ACC when I was 42 years old. I had a mid line encephalocele removed when I was 7.5 months old. I had trouble with math in school. I have trouble understanding some movies and keeping up with some t.v. programs make me mentally tired and confused. I suffer from migraines that effect my thinking and functioning. The radiologist asked my doctor how I got to the hospital when I was admitted for a migraine. My Neurologist did an MRI during that visit and the radiologist saw the P-ACC. The Neurologist wasn’t intrigued or forth coming about what it was and I had to go home and google it! I later asked the Neuro why the Radiologist asked how I got to the hospital and he said most of the time you have mental retardation and don’t learn to sit up or walk. I feel I suffer daily as I have depression and feel I’m socially different.

  • Tim Thomas

    dgilbert…

    For you to wait until 42 to be diagnosed must have been hard with all the questions you might have had, and only now getting part of an answer.

    The radiologis that told you “most of the time you have metal retardation and don’t learn to sit up or walk” I believe to have been mistaken. I know there is still a lot to learn about the ACC condition, and MRI’s have changed it’s ability to be discovered and how people are studying and understanding it.

    My daughter is 7 going on 8, and is a wonderful, happy, and very loving young girl. She has speech, motor, and social delays. She also likes to “hide” just how much she knows and understands. She’s shy and in public, she’s very reserved and withdrawn. We are so blessed to have her in our lives and are excited and apprehensive about the future. She will have challenges ahead, but knowing there are others out there with the same condition that are adults who might have had struggles, but are making it by… that’s inspiring. It sounds (dgilbert and others) like you’ve been misunderstood for far too long and I’m glad this research is being done, because you have so much to offer to this world. Thanks for writing in and like other’s have said, look at http://www.nodcc.org to see all the activities / groups that are happening to help bring awareness and understanding for this condition.

  • viccki balzano

    I have a 4&1/2 yr old grandson who was just diagnosed with this disorder. He cannot speak, but babbles all day long. He knows all objects and the people in his life and is very happy! He received Early Intervention up until 3 which assisted him in walking etc. He has hypotonia of his muscles and fine motor skills are difficult. He is also not toilet trained. Pediatric neurologist advised my daughter that he will never speak and she was devestated-is this true?

  • Deanna Fisher

    My brother did the same thing but is 36 now and talks non-stop. He holds a part time job and lives on his own although his house is next door to me and he has lots of family support. I have a 19 year old step-son with spastic quad cerebral palsy and he uses a communication device to speak. It is a computer made by Prentke Romich called an ECHO-14. There are many different types availble.

  • Andreah

    My sister has ACC as well as aicardi. I am currently looking for a neurosurgeon in the Akron Ohio area to review her and her case. Recently she was diagnosed with a 6cm mass on the midline of her brain, then released from the hospital without her neurolgist comparing her past scans to determine if this was pre- existing or not. I am in desperate need of someone close and competent. PLEASE HELP US!!!!

  • Martha Thomas

    My Grandson is 2 1/2 months old, diagnoised with ACC. He seems fine so far, he is smiling, cooing and trying to stand up in our lap. Is this normal for this type of problem.

  • Deone Arthurs

    I have C-AgCC and I didn’t find out until I was 26 yrs old ( I am now 40), but boy, do I now understand why I couldn’t figure out how you could hold the handle bars of a bike and peddle at the same time or hold the handles of a skipping rope and lift those legs, or even tie my shoes. I can also use both hands for everything! My world is so much different to everyone else’s ( I see things so much differently) and I believe I have more caring emotion and empathy for the human race and peoples feelings than the average, normal person out there. Yer school was a huge challenge, I found I made heaps of friends though. Learning for me was hard….math..what a nightmare! I work and I admit I do find it hard at times. The sight in my left eye isn’t so good and neither is the hearing in my left ear……and repitition, fantastic! Go you AgCCers, we’re unique, embrace it and take it on!

  • my name is Dena Lish

    my son was diagonosed with complete agcc at age 3 …..mabey all of us would be better off without this part of our brain …i wish i could be more like my son. He is a complete opptimist. I come from a very small town…Jaydn has softend the hearts of the most hurt souls, from a very young age he has reached out to strangers young and old …without fear of rejection…He knows no evil….scary for mom but also very inlightning. He is struggling in math but learning to read now. My worst fear is the bully factor..Jaydns lack of social skills, mainly in self defense, are a target to those children who feel the need to hurt back…I worrie about his future in junior high…..any suggestions…please talk to me.

  • Deone Arthurs

    Hi Dena,
    my name is Deone. I am the 1 who left the last message before you. Welcome to the world of Agcc. Just like your son I have complete Agcc, and I too am an optimist. I find too that people have always been comforted by my ways. We have a quiet loving peacefulness about us, and a smile for everyone.Do you find he forgets things? We are who we are and we can’t change that, and I believe god has blessed us with something special. I was bullied to some extent at school and learning was so hard, but I also found I had lots of friends, mind you slightly younger ones. It was hard at school but i hope like me your son can find away to cope with any of the bullying that may occur, it made me into a stronger person by learning to deal with it. I’ve gone on to raise 3 kids of my own and I even go to work. Do his teachers know of his Agcc? Perhaps they can help in some way to keep away the bullies. I went through school thinking I was just dumb and stupid, and my report cards were always, she daydreams, she doesn’t pay attention. I’m there with you and I know the feelings you are going through for your son, just be there for him if and when he needs you. I grew up with the most loving and supportive parents and that nurturing really helps us.God bless you.

  • Anon

    Hi
    I have Agenesis of the Corpus Callosum. Told by my mother a number of years ago, I went most of my life not knowing. During this time I also have a acquired a phd in Physical Chemistry and will be pursuing either a masters or phd in Mathematics. Are there others like me?
    Best
    Anon

  • sharon young

    please tell me how i can purchase a copy of the episode on “what is agenesis of the corpus callosum and the interview with Dr Paul on her research into this disorder. My child has this and it would help to show it to his teachers and others in his life.

  • farah

    oh that is so very comforting to know that folks with agenesis of corpus callosum can lead a life on their on. i have a two and half years old son with ACC. it is very difficult to cope up with this situation at times but many of the above mentioned views have made me feel very hopeful.

  • farah

    and i would like to know from ANON how was the learning experience rather the academic experience?? can i also hope that my son will be able to join the school and go through the studies and all that stuff?? he does not speak a word right now just do a bit of babbling!!

  • Elise

    Hi everyone! My son is 18 months and was diagnosed in utero as having agcc. He is absolutely beautiful. He is walking and beginning to talk and he lights up our world. He also seems so very innocent. I know that the there are so many outcomes for children with this diagnosis but we are just so blessed and thankful for each new day and each new accomplishment. I think the most important thing is to never compare your child to another, just take it one breath and one heartbeat at a time and be proud of every single thing that your child is able to do. Treasure every smile!!

  • Kim

    Hello everyone, I was told today that my grandaughter has ACC and she is 4 days old. In hearing this news I was davastated but after reading some of the cases above I have hope. Hopefully she will be able to function out in the real world with a lot of love and understanding as she is growing up to be a young lady.

  • Andrea

    Anon, our 4y/o son just got diagnosed with ACC, we would never had expected this since he has grown up to be a normal kid so far. Anon, stories like yours bring lots of hopes to our lives. Our son is so eager to learn new things, and so far he doesn’t seem to have a problem absorbing all new information. Please let us parents know, what you think made a difference in your life that help you grow to be a successful person despite of your condition. I raise Anon question again, are there others like Anon?

  • Dennis

    This is a great site!!!

  • Chris

    My 10 yr old daughter was diagnosed with ACC at 3 days old. An MRI at 5 months confirmed it.At 2 yrs old she had a CT scan and found out she actually had Partial AgCC, she has her genu. I’ve been an extremely active and involved advocate for my daughter. ALL PARENTS need to be this way.

    Earlier in the thread “dgilbert” said his Neurologist said “most of the time you have mental retardation and don’t learn to sit up or walk”, many doctors still think this way or totally disregard P-ACC/C-ACC altogether. My daughter started to hit mild “bumps in the road” around 7(which is typical & her Neruodevelopmental Ped. didn’t reference the P-ACC at all but said she suffered from OCD/ODD and Anxiety. Of course she has anxiety she was struggling in school and for children that is pretty much their life! My daughter was seen by 2 more Developmental-Behavioral Peds & still no reference to the P-ACC, they just wanted to medicate her. I had her completely assessed to find out specifically where she had deficits (short term memory, working memory, visuospatial. Then, researched night & day to figure out how to accomodate her & put it in her IEP. She still struggles but school is easier.

    C-ACC & P-ACC can be worked with & accomodations made but more often than not medical professionals & teachers aren’t going to be any help.

  • Veronica

    Hi everyone, my name is Veronica, my daughter was recently diagnosed with acc she is 7 days old and I am soooo lost. I have never heard of this before and all I have been told is she might reach a 18 month old inteligency level if she has c-acc but the highest she will ever advance is a 5 year old level if she has p-acc. This is very hard to deal with and I must say the people on this site are so strong I hope I can be as strong as all of you, I sure am praying for a miracle as I’m sure everyone els faced with this is.

    Considering how ignorant I am to this subject I was wondering if I could ask some questions to the parents who have experience on this; How well is the comunication between you and your child, can they recognize you as the parent or their siblings? What kind of therapy is needed to help with their problems such as walking, talking and comprehention? What can I do now as her mother to make her life easier? How will this effect my 5 year old son? How can I help my 5 year old son understand his sister is going to have problems?

    Anon hearing your story has gave me a little bit of hope but I dont want to get my hopes to high considering the wide variety of possibilities but I at least know God willingly that could be one of them, But I was wondering, did your mom do anything special to help you overcome the downfalls or were you just very luckyand didn’t have any?

  • Mandie Robinson

    Hi there. My son Tyron is 2yrs almost 3yrs, and he has complete ACC. He also has infintile spasms and he’s on meds for epelepsie. He stil does not sit or talk, and his upper body is not strong. I would like if enyone can tell me that it will get better, and that he will progress just as much as the kids in your stories. I really need the support and thank you for this great webside. It means a lot in our life’s. Keep well. From Mandie and Tyron in South-Afrika.

  • Allison

    Hi everyone. My son was diagnosed at 13 because of a caring and in tune teacher who felt his learning difficulties were there because of some reason. School was a struggle but after being diagnosed the teachers were educated in how to best help him learn and he recently at 17 has successfully completed high school. He is employed by a local supermarket and although he is a little slower at things and can be quite forgetful he is perfectly capable of working. Life has been hard for him socially though and I am finding this a big challenge at the moment. He is quite immature and silly acting and has a short temper. He is usually attracted to younger friends including girls and unfortuneately I am having trouble with him hanging around with undesirable people who he is too easily led by. Combine his problem with being a teenager and it is double the trouble. Has anyone else out there dealt with a teenager with this problem.

  • Melissa Carr

    I am 43 years old and I found out at age 38 that I have partial agenesis of the corpus callosum. I have always been told I have a high pain tolerance and I was very gullable and serious all the time. I have some OCD but it is not uncontrollable. I am missing the front half and the only way I knew this was from a MRI I had taken for migraines. I was very sickly as a child, but other than that I had a very normal childhood. People tell me I am very smart and I read anything and everything I can find. I do, however, have trouble learning things the first time. I do catch on quick when I am alone and can work by myself.

  • Kristina

    Veronica,
    What state do you live in currently? Perhaps there are resources that could help you in the area.

    Please don’t believe anything you are told about the intelligence of your daughter unless there is an indicator so obvious that it can’t be ignored! My daughter was delayed in gross & fine motor skills as well as speech. As an infant and toddler she had occupational, physical and speech therapy. Now at 10 she is in an inclusion class with a detailed IEP to accomodate her unique learning needs & she stays on pace with her classmates.

    The National Organization for Disorders of the Corpus Callosum website is a very good place to start for information, it is http://www.nodcc.org. There are groups on Facebook too that can give you added support, just search under Agenesis of the Corpus Callosum to find them.

  • cindy

    hi ,
    I have a 18 year old daughter that was diagnosed with acc at birth. I think that her teenage years have been the toughest. High school has been very rough . She is allowed to stay in high school until she is 22. We live in san diego ,ca . I hope that I can talk with some one about acc. take care, Cindy

  • Maree

    I have a 19 year old daughter with pACC diagnosed at 21 months. She coped reasonably well until adolescence and secondary school. Then life became really difficult and frustrating as it was hard for people to understand something was amiss. She looked perfectly normal and they believed their eyes rather than their ears. We have not had any medical help for this and it was not until I discovered the NODCC sit that I realised how many of her behavioral characteristics were caused by her pACC. I felt that someone had been quietly observing my daughter. It all made sense! We are coming to this year’s NODCC conference in July and my daughter is so excited about being able to meet people like herself for the first time ever. We are even coming all the way from Australia!

  • mary dehaut

    my grand-daughter was also diagnosed as having encephalitis in utero, but was born ACC. she is now almost 5 years old and besides some food wierdnesses , and seeming lack of pain sometimes, she seems highly intelligent, sociable, and happy.

  • Di

    I am a big sister to a 5 and a half year old with partial ACC. He also has recently been diagnosed with ASD (very high functioning) and Epilepsy. Friends of mine always think that there is nothing wrong with him… but they are obviously wrong.
    Today I heard a story about someone with Autism and they were at school and got in a fight… no one here at the high school thought he had problems… except me. I could see that it was clear he did. I know him better than them. I have been trying to explain that people with disabilities wether it be mental or physical can sometimes act, talk or seem perfectly normal, when they really are not at all. One of the things that bothered me the most on this subject is that they were all saying “oh, well he talks to me on facebook all the time… can type really well and uses punctuation” well, all I could say was that disabilaties cannot be defined based on one point of interaction. I have no idea what else to say when people come up to me and say that he is perfectly normal. It took roughly 2 years of my family and I explaining that my little brother is not what they thought he was.

    If anyone has any comment on what I can say when people “attack” me in this way… I would love to hear…!

  • Lee

    Try letting them know that people can have no problems in some limited situations but then in other situations they can have some major difficulties. let them know that the reason he does okay with communicating on Facebook is because his interaction with others and the distractions around are very limited, but that when he has too much stimulation (from noises/happenings) around him that he can become agitated and will not act normal then. Does he go places that would cause behaviour problems? Or does your family avoid social situations that overstimulate him. I know that my family figured out what type of things would over stimulate our daughter and we avoided those things until she was much older and had learned better how to control her reactions to the overstimulations. Even in family gatherings when we expected a lot opeople to be around we tried to have them at home or at my oldest sisters because we always knew there would be a place she could go and be alone or with only one other person to help her be able to get over the stimulation.
    I hope your brother and your family learns some of these coping mechanisms to help him.

  • sarah

    hi,
    my nephew was diagnosed with complete ACC before he was born, it is believed it was caused due to a motor bike accident of his parents, in the early stages of pregnacy (at the time they we’re unaware there son was on the way)
    he is now 10 years old, beautiful boy, which i adore, he’s my world! he struggles alot with social skills with his peers, and finds it hard to make friends.struggles with maths and problem soling also! apart form that his reading skills are brilliant, even reading aloud, they are of aprox a 13+ year old.
    our families major concern right now is his behaviour, lately(a very rapid change) he has been doing things like, cut up all his clothes, and drawing nasty pictures!
    i am scared of these changes and i am despritly hoping someone can share advice, has anyone experienced this???
    also any advice to make parents realise his learning and social skills isn’t his fault, they are ignorine the fact of ACC
    thanks sarah

  • sarah

    i would also like to add, anon, your story is an insiration!
    my nephew was advanced in speaking and reading and gross motor skills.
    however it’s only the last 6 months his behavour has changed until then he was good as gold.
    i’m so glad i’ve found this site the stories are a massive eye opener and until now i haven’t known anyone with this disorder.thanks

  • Catherine

    Melissa Carr or to anyone with adult onset of symptoms or late diagnosis ,
    my only symptoms as of yet, I ( age 39) were sudden onset of pressure headaches Ear fullness, and neck stiffness. I am otherwise normal. I am concerned about the likelihood of new symptoms developing like, seizures, etc but my drs say the finding was “isolated ” and prob is unrelated to the headaches…?! ps what works to rid u of headaches? All that has worked yet for me are steroids :(

  • Lance

    i’m honestly refreshed by this article especially considering i only found out about my AgCC after highschool

  • Dana

    My son was diagnosed at age 7 with Hypoplasia of the Corpus Callosum. We found it on an MRI he had performed for severe posterior headaches. It was so great to finally find out what the problem was. We had gone through the gambit trying to figure out if he was autistic, ADHD, or a hundred other things. He is a very social boy, but doesn’t always quite follow what everyone else is doing. He has severe trouble in math and reading, but loves science. Of course he is always easily swayed and picks up on any bad behavior. I think this is probably true about any child. However, it takes much more time to get those behaviors corrected than most. I do worry about bullying as he gets older, but for now, he is in a wonderful school that teaches the students tolerance and understanding of children with differences. His teachers know him and absoutely love him and his classmates always want to help him. We have been blessed to be in such a wonderful school system.

    P.S. He goes to the Chirophractor once a month and that has helped with the headaches. I know a lot of people don’t believe in that stuff, but it really does help. I also believe it keeps the neural pathways more open and able to process information a little easier. Since we’ve been going, he rarely gets a headache unless he’s in a very stressful situation.

  • katrina

    My son was diagnosised with hydrocephilis at 18 weeks ineutro as a complication of twin to twin transfusion. We were told that he probally wouldn’t make it after the surgery and now he is 4 months old. At birth we were told he has ACC. It’s good to see and hear all the information and to know we’re not alone. It’s good to know that he could have no or very little problems.

  • Carla Ogden

    I have a friend who has a 17 yr old son who is about to turn 18 and his mom and step dad dont believe he could live on his own amd live aproductive life on his own is it possible for him to do this any suggestions how to get him ready for lliving on his own and being productive in life

  • Carla Ogden

    is there any books to help prepare him

  • Anabella Prosper

    I have a 5 year old little boy we just found out he has acc, I have a hard time sometimes when I see him get very emotional, he is a sweet little boy and I pray God will give strenght to do everything I can to help him. He doesn’t know the alphabeth can’t recognize the letters or numbers, is very hard, you don’t want to see your child strugle. I pray for every parent who has a child with acc, they are a blessing no matter what.

  • belinda wade

    my son is 17.he was born with agcc and also cerebrum atrophy and a couple more brain.let me shed some lite on some young parents of this.its a frustrating thing but so very rewarding..repetition is the key…dont lose your faith cause you are the only persons whos not gona take no for an answer..dont let them quit and take one day at a time.ive been dealing with this for a long time and i still go threw my momments..realize that some things they wont learn and others they will..thats the rewarding part..when you notice and see they learned..they may not learn all but remember..they will learn some..and do we as parents know everything in this world?..no..but we know some…and most of all parents..Dont GIVE UP EVER…THEY NEED YOU AND YOU ARE THEIR TEACHER….GOD BLESS YOU ALL..

  • Vanessa

    I have this condition,,,i understand what he went through….I have diffulty retrieving informations,,, But behind of my condiition I still didnt give up….I’m still here taking colleges courses and my professor is proud of me

  • Vanessa

    I also have difficult time socializing w. friends ,,,That’s wht my friends label me as a loner….

  • augoldminer

    I have P-ACC.
    I was born in 1950 and not DXed till 1966 and at that time they did not even have the name Partial Agenesis of the Corpus Callosum the doctor only told my parents that i did not have the normal connections between the sides of the brain.
    I can not visualize words or math problems and do them in my head.
    In high school i had a spell check books that i used for spelling and did math with a slide rule.
    Some of the strange things are that i read at about 600 words a minute and and have a photographic memory.
    I am also good working with my hands and can fix just about anything.
    I have served in the US Navy as a electrician, been a industrial construction electrician, firefighter/EMT, chemical plant operation technician, Worked in the mining industry from helper to mine superintendent.
    I have worked every job in underground mineing and my employees found that out the hard way as i would fill in for members of the crew that were out sick.(anyone that even watched the TV show Undercover Boss will understand.)
    I am now disabled with the autoimmune disorder sarcoidosis fibromyalgia. but i still build computers and do hobby machinist work.

    i agree that any child with ACC must have a Individualized Education Program (IEP) school was hard enough without the teachers understanding and having to invent my own workarounds to do school work.

    Not all the people with ACC have a high tolerance for pain. My fibromyalgia proved that for me.

    Children with ACC may not be able to eat certain foods as some are supertasters and some foods taste totally different to them. in my case its artificial sweeteners all them taste extremely bitter except splenda. Do not try to force then to eat thinking they will acquire a taste for them.

    A computer set up right can be a big help to some with ACC. and it can if they are trained right allow them to compensate for many of the problems like writing and hand eye coordination. heightened sensitivity, feeling, or hand movement may cause many to have problems with handwriting, But a computer allows them to compensate. I know this because my hand writing is almost unreadable by anyone else.
    Also if they can handle learning the key board and raising there typing speed this can speed up homework and allow them to manage there time better. i spent a long time every day after school doing homework that i could do now in a few minutes on the computer. Making someone HATE school will not help them in the long run. By the way i still go to college at the age of 60 but now its for fun and for something to do as being disabled is boring.

  • Tricia

    I have a 10 year old daughter who has partial ACC. She was diagnosed around age 1 and she has been in many helpful programs since then and has progressed very well with her IEP. However, she is now going into the pre-adolescent years and I am getting more concerned with her interactions with other kids at school and her behavior. She is doing not so nice things to kids, such as digging her fingernails in other children, pinching, etc. and I feel this is related to her ACC, almost like she is frustrated with her delays and takes her frustrations out on other kids. Her teachers have always said the other children love her and that she gets along with her peers very well, but I can see a difference in their relationships as they are getting older, and this really worries me. Has anyone else dealt with these types of behavioral issues that could give me some insight as to what I could do to help her? Just like Allison mentioned earlier, she has always interacted better with younger children and as she gets older this is also more concerning to me. Overall I am looking for any helpful information for these adolescent/teen years she is approaching…Thank you

  • Amy W.

    Thank-you for this web-site!!

  • Pam H

    I am 24 weeks pregnant and my son is diagnosed with complete acc. I am thankful to find this website and to hear other family’s stories. it gives me a lot of hope as I do not know what the future holds.

  • Michelle V

    My son is now 5 and was diagnosed with partial ACC at birth, he is now attending four year old kindergarden and has been doing well but does struggle with friends. He is now enrolled in PT, OT as well as ST and has been progressing well. He was also born with congenital scoliosis and had a spinal fusion a year ago and continues to have balance issues but is able to do most activities well.
    He has been tested recently and he scored in the high range for cognition, I am hopeful; that his ability to understand and comprehend so well will help him in his life.
    Thank you to all for sharing your stories.

  • another mom

    Hi.My eight year old son has complete AGCC. he is doing well; Speech is a bit of a problem for him; when he ws young he spoke very little and we taught him sign language which he picked up fast.Now he speaks well, but he sounds like a child a year or two younger, he sometimes has a problem with trying to find the right word. Yet he understands what people say appropriately for his age.( ie poor expressive speech, good receptive speech) Academically he goes to a regular classroom, we moved him to a private school with fewer kids and more support from bullying. He now has friends he loves to play with which is great.
    He needs a lot of repetition to get a concept in math or writing,and often what he needs the most is someone to keep him on task.Sometimes it is a matter of just keep on explaining til he gets it. In actual fact though, he is quite intelligent, his IQ was tested as a three year old as above average using a test that incorporated sign language responses. He has a subtle sense of humor; i remember once when he was around 4 he was working with a preschool therapist who gave him a way too easy puzzle to do, and was saying soothingly do you think you can find the right place to put this piece? He was milking it for all it was worth, trying the piece ni all the wrong spots..Til i came in and told him that was enough and he should do it now.He looked at me like ‘spoilsport ” and put every piece in the right place straight away.He was really enjoying taking the therapist for a ride.
    Having said that though, he does have days with academics when some days he seems to find thinking easy and some days he seems to be working through a brain fog. But some areas seem to come easier to him; music, geometry, shapes and fractions, for example. As a parent my best advice would be plan to teach and explain concepts simply; a lot.

  • amy spataro

    Wow what a great site!!! My son is 7 and p-acc but I guess that’s still in question, lol
    My Alexander….he is completely outta control all I can do is laugh @ times because I’ve
    Done everything as a mother and every behaviorl,phsy testing,genetic testing,ect…
    Jus started him in baseball and that’s not working I’ve had 5 iep
    This year alone and switch his class 3 x’s he’s now in a self contained classroom
    W 3 teachers and 6 kids…I have 6 diagnoses on top on the p-acc our next step
    Is going to Ucla…se if they can help…I’ve tried 19 meds nothing works for him:(
    But he’s a lover and so adorable he soooo smart and has made me proud in everything
    He does…I jus have to get his behavior under control he kicks bites throws desks chair ect and teachers and his peers…the dr’s put him in a mental hospital twice…he’s tried to jump outta my truck while I was driving pretty scary…he has no sense of impulse control always eating, high tolrence to pain, eyes cross in, repetitive speech, stutters, tuff time swallowing food,no fear of danger, doesn’t understand consequences…any1 else have these severe behavior issues w their acc child….ahhhh lol help me I’ve tried everything like I said his dr’s are sending us to Ucla they’ve never met a child like this…

  • Christine R.

    My daughter was diagnosed with ACC officially when she was 2. I had an abnormal ultrasound at 32 weeks, and the doctors said she had aqueductal stenosis. She is now 5 1/2 years old. She is happy and developing normally. She met all of her milestones early. She does have some behavioral quirks. She does have a few social issues and she doesn’t sleep. But, stay positive. God has given us all a speical gift in these children. They see the world in ways we don’t! I am truly blessed. We tell her all the time that she is special, just like our other 3 children. She just learns things differently.

  • Aspen

    I just saw 1 poster in the Toronto (LORETTA). I am 31 years old and I have lived my whole life seizure free, basically not knowing that I had ACC at all until the last year when I had severe headaches and was sent for an MRI scan to make sure I was Cancer / Clot free!… At this point in my life, all I can do is Thank God, for making me a Survivor! I have 2 beautiful girls (2yo & 6yo), married to a wonderful husband, and enjoying life in general.

    Looking back though, I was subject to intense bullying (I now understand it was because I lacked awareness of social cues) – and I’m now officially able to forgive them for what they DIDN’T know about me, I had trouble in school – mainly focussing on just 1 task at a time, and I was considered the BIGGEST cluts around – constantly bumping into things that were situated right infront of me. I had perception problems, which were attributed my severe Ear Infections and tubes as a baby – of course, due to my split brain.

    I have just stood infront of my family doctor, who has basically told me, he’s mesmerized by my “presence” my “existence” and is fascinated by the fact that I’ve made it this far on a social level (getting married & having 2 beautiful daughters is such a blessing for me now). Yet he finally understands, why I do sports with my left, write w/ my hand but am able to write with my left as well (clearly as day). He has decided to contact his friend – a neurologist, who will be helping me relearn coping mechanisms (because even though I’ve gotten this far, the knowledge is key and I will be able to use added skills to cope “even better”.

    That being said, has anyone here looked into NeuroPlasticity? this is a new area of study, where it is believed that you can retrain your already developed brain structure to work according to its needs based on the other “functioning capacities” of your brain. It was brought up that he would like me to look into this and see if I’d be interested in trying this in order to relearn what I lost in my early Teens, things such as Identifying facial expressions and social cues….

    I am looking forward now, to the REST OF MY LIFE

  • Oneta Hammond

    I am 53 years old,my Family had three generations of ACC,my Grandmother had 1,My Aunt had 1,my cousin had 1 how lived to be 11 years old and she had a nother boy he do’s not have ACC,my Mother had 3 boys ,my first brother lived to be 17 months, my second brother lived to be 6 years old and the third lived to be 5 years old.
    I had a son in 1979, Jesse lived to be 2 1/2 years old.
    The famales were the carriers of the recessive gene and the males were affected,they went into seizures was given phenobarbital and they were considered retarded,but they did responsed once every so ofton to things going on around them,it was good to see and react with them.
    Dr John H Menkes at the John Hopkins Hospital in MD,was the resercher on this case and Kathryn Schilmoeller,Ph.D., from the University of Maine has been involved in the ACC network,she had help me in knowing there is more people with ACC.
    All our Boys were Little ANGALS and all of YOU with ACC are Family and are ANGALS.
    GOD BLESS YOU AND KEEP YOU SAFE!!!!!

  • Julie

    I have a 9 year old son who has ACC. We were told he would never walk, talk, or eat as normal children, even going so far to say he would not make it out of his teens. Even though he has many of the same problems addressed above, he is able to do all of those things. It just took a little longer. I am also a researcher at the University of Texas at Tyler, working on a current study to help educators understand this disorder in the hopes we can educate others and help our kids.

  • Geri Zamberletti

    Wanting to learn more!!

  • Geri Zamberletti

    Wantine to learn more!!

  • Aimee

    My 19 month old son has C-ACC. We found out when he was 7 months old. His head was not a normal shape, so he was sent to do a ct scan. we found out he had craniosynostosis, which is the premature fusion of his sutures, which was not allowing his brain to grow properly. And ACC! At 8 months old he had a total reconstruction of his skull to open the sutures and relieve pressure from his brain. He was not sitting up before surgery. He is now sitting, crawling, pulling up and cruising along furniture. I believe in the next couple of months he will start to take those first steps. He babbles but is not speaking true words yet. He goes to physical therapy and has a speech therapist. It is very scary not knowing what the future holds for him. I believe he will be very smart and very interested in everything that he does. He is a joy to be around and is always smiling. I am hoping they will continue the process of educating those with this condition!!!

  • tina

    i found out through a ultra sound i had early in my pregnancy.it has been tough at times.but i wouldn’t give her back for a million dollars.i love her.

  • masoum

    my son is 10 mons and he is diagnosed with complete acc. I am thankful to find this website and to hear other family’s stories. it gives me a lot of hope as I do not know what the future holds. He has some sitting now .he is very sweet baby and me and my husband and my 7 yo doughter love he. I am doing organothrapy like phisiothrapy for him. He is going to be better, i hope.

  • sanya

    it is hard and it is geting hard i cant belive it and i wont belive it tht my 9 monthes son has tht p-acc i m 20 year old mom facing so much but i wont step back i belive tht my son will be ok

  • masoum

    I hope that be no patien child in the world

  • Larry White

    Their is a lot to learn for parents. (and things you have to accept and not forget.) Our daughter has a hard time making friends at school because she is different. Math is harder for her, and she doesn’t really understand consequences for her actions. She has sensory things that bother her. (Loud noises especially.) Her fine motor skills are not like other kids. She had speech therapy when she was younger and occupational therapy. It is up to me/us to learn more so we can take better care of her.

  • Jane

    I have a 23 year old daughter with ACC, she is now on Senior university level, is very hard for her alone to succeed on the school but with our tutoring she is progressing and almost finish her undergraduate school. One of the big problems that she have is to have friends that understand her and can communicate a the same level. If some of you have interest to be a friend of my daughter will be a blessing for her to meet somebody that have the same condition and experience like her.

  • Janice

    Hi, I have just come across this while looking up information on ACC. I am 34 weeks pregnant with twins (girl and boy) and found out a long while ago that my son has complete acc, a small Cerebellum and abnormal folding of the brain.
    It has been really hard to accept as my little girl is developing normally, yet her twin is going to face so many difficulties when he comes into this world. Reading the comments posted here has really helped me in my understanding but obviously, because of the added complications I still don’t really know what the future holds.
    My motto in life is ‘One day at a time’ so I will just have to be strong and take each day as it comes.
    God bless everyone out there and thank you for the hope you have made me feel.

  • Greg M

    I am 46 years old i didn’t find out until about 6 to 7 years ago that i had AgCC. I have never had any problems whatsoever and how i found out is i got hit in the eye by a crowbar at work and they had to do x-rays and stuff. Well there it was in black and white but my neurologist said that mine was unique and only a very few have the type that i have. i’ve been asked to hold seminars and so forth with the dear doctor but i never accepted figuring i would be looked at as a freak.

  • Karen

    My daughter has ACC. It was not diagnosed until she was 16 and she started having seizures. She continues to have seizures right out of the blue. She is in college and never had the typical symptoms associate with ACC. She has always excelled at math and science and has no issues with socialization. MRI confirmed the diagnosis and every neuologist that sees her tells her “you look good”. She does. My daughter had NO symptoms until the age of 16. We have tweaked our lives and move with her so she will always have a safe and secure environment when she has seizures. We will always be there for her. Wr really take one day at a time and hope for the best because she was so normal when she was younger. She is such a bright and beautiful child. A blessing in our lives. God Bless everyone who has the decision we have to care for someone you love.

  • maite

    my daughter was told this week at 37 weeks pregnant that her little boy has acc, we are waiting for an MRI
    thank you helping us understand about this disorder

    • paula

      I am now 32 weeks and was told that my boy had partial cc and enlarge ventricles. I am so stressed out and worried, scare at the same time. Please let me know how is your boy now.

  • Beth

    I am 42, and was diagnosed with ACC a year and a half ago. I was outside shoveling snow and fell on the ice, went to Urgent Care for a CAT scan, and that’s when it was detected, so I had an MRI and that’s when it was confirmed that, yes, I do have ACC. I am a totally functioning adult, but had a horrible time in school. I had no trouble memorizing absolute facts and loved music, math, english, memory work, and spelling, but as far as science, history, or any subject that required memorization of chapters of a subject, that is something I can not do.

    My doctor told me that if I put a pencil in my left hand and a pencil in my right hand, i could draw a perfect circle with one hand and a perfect square in the other hand without even thinking about it. It is a really cool test. We decided to try this test at the Thanksgiving table, and of course no one else could do it. We sure did have a lot of fun and a lot of laughs about it.

  • Debra

    My daughter is 8 years old with isolated cACC. She is amazing and is the most loving child in the world. From day one I worked with her and now she is in General education with inclusion support, a 1:1 instructional aide, OT, Speech/Language therapy, and resource for math. She ws taught to read in Kindergarten through phonemic awareness and I HIGHLY recommend this method for learning to read. She is an awesome decoder so now whe can just concentrate on comprehension. So many kids with ACC have to work on the decoding and comprehension. She is able to do the work as her peers with the classroom support. Expect the most and believe. Most school professionals have not worked with children with ACC and they don’t realize that althought they sound less mature, act less mature and have trouble in school, their IQ’s are most often withing normal range. They need repetition repetition repetiton!!!! Savannah learns it , I just have to get the material before she does it in class, I Pre-Teach it to her at home so that she can solidify it when she learns it at school.

    I will never focus on what she cannot do or may not ever do, I only focus on what she can do and what she will do. She is a very happy little girl and loves to learn. She is now understanding that some things are more difficult for her but I tell her daily that she can learn anything her friends can learn and that I am here for her. She may not ever be able to tie her shoes or ride a bike but hey she can always were slip ons and ride her scotter!!!

  • Kenny

    Well, Just to give all the parents hope out there. My daughter was diagnosed with total acc and I was told she would probably never get past a first grade level. well after working with her staying on her homework, ect. took her back to get her re-evaluated at 8 and she had progressed but their prognosis was that she would be about the mentality of about a 5th grader. I got full custody of her in the fourth grade and made her repeat the fourth grade, sat with her every day and made sure she understood her homework, she is is normal classes now and is passing now with a “B” average in all, the only class she struggles with is math(which is expected) and she is now 16 and a sophomore in High School. I Love You Sierra and am Very Proud of You

  • Lauren

    I am 24 years old and like many others on this website, Have just find out I have an underdeveloped corpus callosum (particularly in the posterior region). I have lead a totally normal life, have had no learning difficulties or any other abnormalities, so it came as a shock to me when i discovered that many people suffer from this condition. I recently had my first ever seizure (which my doctor believes is unrelated to my condition and could just be a “fainting episode”) Discovering that this is a symptom of this condition, I wondered if it maybe was related and if it is something that will continue to happen. Is there a possiblity of developing these kinds of seizures later on in life and are they likely to reoccur? I am amazed by the inspirational stories that have been shared. Thank you

  • Dawn

    My son is 17 months and he has had two surgeries for craniosynostosis. After an MRI we were told he has thin white matter. By reading here it seems he has AGCC but what kind? He has corpus collasum but it is thin all over. The doctors have only told us that it is causing his delays and will continue to delay him for life. I dont know what to expect. Thank you and if anyone else has similar experiences please let me know.

  • Dawn

    Well we saw another Doctor today and she explained his MRI alot better than the other DR. Anyway he has thin white matter but she said that ACC was not noted so it is not a diagnosis? She mentioned that he possibly has cerebral palsy due to his low muscle tone and stiffness of extremeties.

  • Sierra

    Thanks for this article! I have a brother and 2 sisters with agcc I was told recently after living 20 year and believing I did not have it that I could have agcc and not even be aware of it :/

  • Sue

    I am 19.5 weeks pregnant and have just found out my baby has Agcc- I appreciate all of the comments and stories on this website and others- I am wondering how likely it is that other children we may have in the future will have Agcc, among many other things of course…

  • Jaime

    I’m 24 weeks pregnant was diagnosed that my daughter has complete acc and trisomy 13 has anyone had this diagnosed. This is a great site it gives u hope and more understanding.

  • Elvira

    We just found out our 3 week old baby has a partially thin posterior and anterior Corpus Calluses. We live in Central America, and don’t have access to Seminars, Therapists etc. Can anybody give us some advice on finding information on the internet? How to diagnose the exact problems our child will have and what exercises I could begin with?

  • Kelly

    I have ACC. The one thing I’ve noticed in my life is that transitioning for childhood to adulthood is and has been extremely difficult. I was given assistance in school (IEP) and went off the college where I learned how to use my IEP skills. However, in the real world, there is no teacher or instructor holding your hand. I’ve been told at every job (by my boss) that I am too slow to keep up with their skill level or expectations.

  • jody griggs

    I

  • Juline

    My son will turn 29 this year. He was diagnosed with ACC when he was 5 years old. With the help if IEP’s he completed 12 years of school and graduated High School with C’s and D’s. Ryan exibited all the classic ACC learning difficulties through childhood and adolessence. He got married at age 21 (I was apposed as he was so immature I felt he wasn’t able to accept the responsibilities of Husband and in the future fatherhood.) I met with his fiance’s parents and tried to teach them about ACC and the challenges Ryan had because of it. Needless to say, the wedding went on and lasted only 1 1/2 years. Thankfully they had no children. Ryan divorced because he wanted to have “fun with his friends” instead of being responsible. Money issues are huge with Ryan. Money is the great equalizer for him. If he has it and is spending it he feels “normal”. He works and is a good worker, but he has a hard time keeping a job because staying on task is a challenge. He needs someone keeping him focused. He loves to visit with customers and believes he is the most helpful of any employees, and is shocked when he is let go. He lives back at home now as his income is too eratic to pay steady rent. He also has accummulated a lot of debts. We have a Power of Attorney and are helping him stick to a budget and pay off his debts. Because math is difficult for him, a budget is like a foreign concept to him. I am constantly teaching and re-teaching the same principles over and over again. Girls are our biggest problem with Ryan. He likes facebook and talks to girls on line. If they are polite to him, He thinks they LOVE him and he immediately LOVES them. He wants to spend every moment when he is not at work, with them or talking or texting. He is very affectionate. Wants to hold hands, put his arm around them, stand way too close when they are around him, hug all the time. He moves way too fast and it scares them off. When they withdraw from him, he can’t pick up on the “cues” and wants to “fix it” instead of just backing off. Consequently, he has a lot of enemies. We are at a loss as to how to help him. We continually try to teach appropriate social behavior, but he doesn’t see what he is doing as inappropriate. Is this behavior typical? How do we help him without hurting his self-esteem? Any information as to how to handle adult ACC patients would be very much appreicated.

  • Jennifer Diamanti

    My son is 5 years old and was diagnosed with complete AgCC at birth. He was a big baby so my OB wanted to get a late term ultrasound, which showed he had some slightly enlarge ventricles in the brain. She then told us just to be safe we should have an ultrasound done on his head after he is born. The day after he was born while we were still in the hospital they did the ultrasound and reported back that the ventricles were fine but that he was missing his Corpus Callosum. The pediatrician told us that this could mean he may be delayed or he could have seizures that would make him a vegetable. We were devastated, I was not prepared for that information, thankfully while still in the hospital they did an optical test to rule out the most severe syndrome and the head of pediatric Neurology came and examined him as an initial assessment. At 2mo. old he had an MRI to determine if there were any other brain abnormalities. It showed that the AgCC was isolated and nothing else was wrong, we were so relieved to know that he would be ok, health wise. Then life went back to normal, he sees his neurologist every 6mo. which is just a check up of sorts. Around 18mo. old we noticed he was not keeping up developmentally with speech, so his neurologist suggested we have him in a developmental program (Birth -3 program). Over the next couple of years it was really difficult. I would watch other children at the park who were the same age being able to communicate with their moms and all my son could do was sqwack and babble. Slowly he began to find his language. Then I decided it was time for some more regular social interaction. I had some friends recommend coop preschool so we tried it. It was a disaster. The teachers saw him as a problem child because he could not follow instructions and the other parents would not talk to me. One of the assistant teachers brought to my attention that she was concerned that he had autism because he liked to group things and do specific tasks over and over again. I was confused despite seeing a neurologist and doing speech therapy we were not being given the proper tools or information to understand our son’s development. Then someone at the Northwest Center where he was receiving his therapy suggested developmental preschool through the public school system. This was a God send. He loves school and is doing really well. Very utilitarian functions such as potty training, dressing etc. are difficult and have been a battle but we finally figured out that he learns everything through repetition. That is why he likes to do the same thing over and over. Social skills are a struggle as well he has many of the same difficulties that others have posted here and that is the main focus for his teachers. Now we are facing Kindergarten next year and I am terrified. He has had amazing teachers up until this point but I have just realized that I am going to be his best advocate, as his mother I have to be proactive about fighting for him and making sure that he is not misunderstood. I am starting to get plugged in to communities suck as NODCC, and look forward to learning more and more. My son is amazing he is so intelligent and sees the world in such a unique way. I learn so much from him everyday. The biggest lesson that I am still learning is Patience.

  • Brian

    Probably the only thing I love about myself having ACC, is my high-tolerance to pain! Other than that, I dislike it when I don’t understand what’s going on, or when I have trouble speaking out what I want to say, or when I understand someone else’s feelings.

  • Brian

    or when I can’t* understand someone else’s feelings

  • Rob

    we have a 14 mos old who was diagnosed w/AgCC & in addition trisomy 8 ( saw your post Jaime w/re to your Agcc w/trisomy 13). Anyone out there w/a similar diagnoses pls by all means contact me (rob@rescuefinder.org). We rec’d this diagnoses while my wife was pregnant…..trisomy 8 1st @ approx mos 3 of pregnancy & then around mos 6/7 they discovered no development of the CC. Both diagnoses have since been confirmed & our daughter (Alisa) also had an MRI brain scan @ 6 mos which thankfully did not uncover anything new…just another confirmation of the diagnoses. We remain positivie & proactive & happy to have found this wonderful site.

    Peace & much stregth to all.

    Rob

  • Rob

    Jaime…..just dawned on me…..you’re close (at least w/in a few weeks I take it) to your due date….please fell free to contact me @ the email listed in my previous post & ‘ll be happy to tell you of our labor experience. In short, they decided to begin labor a few weeks early as the placenta was failing. Thus Alisa was born w/low birth weight (not too bad tho…..4lbs 15oz) & spent the next 16 days in the infant ICU. She’s been extremely healthy ever since….has maybe had a slight bout of the sniffles twice at the most. Fingers & toes remain crossed for you & I’ll surely be checking back here (or perhaps an email from you) for an update from you. All the best!!

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  • Jennifer WIllhite

    I just found out today that my baby at 20 weeks gestation is lacking a corpus callosum. Any prayer or support would be wonderful.

  • tiffany

    I have a son that is 7 years old and he was diagnosed with completed ACC when he was about 2 months old, he was delayed in alot of his motor skills, he delayed in toliet training, he really isnt talking either right now, he had ECI up till Age 3 but now he goes to a school, but isnt keeping up with other kids, but hes a loving little boy! I wouldnt ask to have him any other way! This was a good article or piece!

  • Deena

    I’m 22 weeks pregnant and just found out 3 days ago that my baby girl has ACC. Needless to say, I’m scared and don’t know what to expect. I’ve read all of these posts, while some made me smile others made my heart hurt. The hardest part is not knowing the severity and how to best prepare. What, if anything, can I do as an expectant mom to prepare for what obstacles we might be facing? Thanks for being so candid on here, this is a great resource.

  • Emily

    To Deena:
    I know exactly what you are going through. I found out at 20 wks gestation that my son had ventriculomegaly. We traveled almost 3 hrs to a larger hospital where it was questioned why he had this condition. They decided to deliver me at this larger hospital instead of in the small town where I am from. I was induced at 39 wks and he was born crying, beautiful, and as “normal” looking as possible. An MRI was done that day which confirmed the absence of the corpus collosum. Up until that day we did not know of his condition or what to expect. We were told he could possibly be blind or mentally retarded. He is now 3 months old and is develping completely normal. We are told that he is reacting as well as any baby his age. No one can believe by just looking at him that he is missing part of his brain! So my advice to you- just realize that this baby is YOURS, and you will love it unconditionally and give her everything she will ever need. I am not a religious person so I cannot put it into that perspective, but I can just say that you were given this baby and you will be able to handle it. Once you see her face no matter what the outcome, you will melt and not even worry anymore. One of the worst things you can do right now is to research. I have refrained from reading much online. I have only started now just to educate myself as we will be seeing his specialist in a few weeks. I hope I have helped a little, maybe just to ease your mind about delivery. I wish you lots of luck!

  • Kristine

    My son has a mild deficit with ACC. At 11 he failed 6 of the 8 auditory tests and now at 13 and retrested, he failed only 2 of the 8 tests. My neuro specialist says that it may get better as he gets to adolescence. I am hopeful. my question is – does it go away? could the fibers ever connect where it then clicks for him. He struggles with school but it has gotten somewhat better over the years. I know he is in a mild stage but he has so much difficulty wth comprehension/decoding words, etc. Should I have him get an MRI just to see how far or close the sides of the brain are? we are just relying on the auditory tests and his struggles at this point. Thank you for anyone’s replyhere.

  • MOlly O’Brien

    I have serious concerns as my 20 year old granddaughter’s boyfriend of over one year duration just cannot get or hold a job. He just has no skills and can’t seem to learn what he is taught. My grandson has a carpentry business and has taken him to work , even bought him a measure with all the marked measurements on it and he is just costing my grandson more a week than hiring a good carpenter would cost. He tends to be extremely lazy and has an extremely hot temper. The other night my granddaughter who has a disability (spina bifida) came home from working a 10 hour shift only to find he attempted to make dinner, burned everything and the house full of smoke. She lost it and told him he just could not do anything right. He then ran headlong into the wall, ambulance called, air lifted to a head trauma facility and later was sectioned to a psych ward. It was found he had no white matter in his brain. I only found this out today by accident as I think my granddaughter is trying to hide this but it is apparent to anyone who meets him that right off the bat there is something just not right. However, he can name any program, movie etc including the directors, the stars etc He also is self taught to play piano and guitar. We all could not figure out what was wrong with him and his mother denies anything being wrong, but now we are very much aware this is what is going on and will not get better. He did not want his mother to know of the head against wall incident and that too tells me something. He is a grown man of 25, handsome as all heck, but at the risk of sounding cruel, I want my granddaughter to find someone else. With her own disability she needs someone to help take care of her not her go off to work and support this grown healthy appearing male.

  • Deena

    To Emily~
    Thank you for your kind words, I appreciate them more than I can express here. I’m happy to hear the outcome about your baby. I love her already and can’t wait for August to get here to finally meet her. It’s been stressful but as you said she’s mine and I’ll love her no matter what. Thank you again!!!

  • fatima

    i m 19wks pregnant and having twins.one of my twins was diagnosed with partial-ACC.it was really very hard for me to accept wen dr told me ystrdy.i even dint knw abt it.this sites really very helpful bt as m in middle east i cant find any good programs for my child to make him cope with his situation.hope he will be fine wen comes in dis world…..all i need to do is to pray for him.thanks evry1 for sharing your stories.These made me relax as i dint knw hw to manage his condition wen he be in my lap.

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  • Robert Matarazzo

    My name is Robert Matarazzo.My boy was diagnosed with hydrocephalitic Agenesis of the Corpus Collosum AgCC or ACC as some call it.He is three and just recently started learning to walk.He wears braces to help him develope his gait.He still does not speak.It has been my understanding that his condition may have been brought on by a virus contracted by the mother which effected brain growth and affected early developement of the Corpus Callosum.This is interesting because my wife began cheating on me with a Level II child rapist early in the developement of my baby boy.Could the virus have been an STD? If it were an STD then this would make for a very interesting study to see if the virus could be isolated.A prossible antigen produced and treatment along with early detection methods developed.

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  • Alyssa Castillo

    My son was diagnosed with AGCC at 20 weeks gestation. I am affiliated with the military.

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  • rachel

    hi my daughter is 11 yrs old..she has acc all her life,she was doing ok she had some learning problems and didnt talk/walk to little later why she was a toddler,for the last few years ive starting to see a difference in her,she doesnt understand emotions,how she/people fell,goes off into her own little world,struggling in school,has alot of behaviour issues,obessed with food/muisc and recently having problems tidying up after going to the bathroom…ive never been given any information on theses are thing to look out for and because she goes to main stream school she was cut off for services so were on waiting list to get phisco etc because shes a weekness on her left side of her body,when i ask her doctor about everything im noticing about her they dont have any answers…i started to think she was been bold and i was a bad mum until ive seen alot of the problems shes having is related to acc,if anyone know anywere i can get more information would be a great help as im noticing more of the problems as shes getting older…like will it get worse,what should i expect..shes due to start secondry school soon and really worried about her as she had been buiiled in her junior school and i need to try get her a sna

    • methree Clark

      Go to the website http://www.nodcc.org. It is a good first step to help organize your information. Most of what you are experiencing are the symptoms of the social differences which our kids with AgCC encounter. All we can do is try to teach them strategies to get around the problems. You might talk to the school counselor to see if there is a social skills group in your school. That has been beneficial for my son.

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  • ritu

    I have a neice, who is diagnosed with downs syndrome and now 14 months old. Recently has been detected with hearing loss hence MRI was suggested as preop cochlear implant reuirement. Just got her report saying she has partial ACC. i am wondering what developmental delays she will have on the Downs syndrome background. Anybody has similar experience?

  • Zoe

    I just wanted to say a big thanks for this website. I am nearly 26 weeks pregnant & i have been told my baby boys ventricles are larger than they should be & also may have C-ACC, I will have an MRI scan on tuesday to confirm this. When I came out of the hospital I have neverfelt so low and confused but reading all these stories have give me hope for the future xx

    • Tammie

      Zoe, I have a daughter with AgCC and she’s really doing a lovely job of growing. she’s almost 18 now and when i first starting researching this that was the life expectancy of a baby girl. Talk about low! Now the average age is 44. Keep your chin up and love the baby. Never stop pushing him to succeed. I push her every day.–I also push against the agencies and insurance companies that don’t think she’ll get “better”. I know she’ll never be “normal” but she gets “better” EVERY day.

      • hydrogirl

        Interesting you say the average is 44, I know a lot of people and they are well beyond that age! Myself included! Better is in the eyes of the beholder! but a person will not get worse!

    • paula

      How’s your boy now? I found out so late in the pregnancy. I was told the same as you. I like to know how he’s doing and how are you dealing with it?

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  • Shane

    our little girl (and little is an understatement as she is the size of an 18 month old at 3 1/2) has a very thin corpus callosum -. Initially we were told she had ACC. At birth she was 2.11llbs, tiny but functioning fine. Issues we have had 1 – she is tiny but her growth horone check was normal. Her bone scan was normal (so everyone saying she will suddenly shoot up in size is false as there is no room for sudden bone growth. They have to be lacking nutrients to have under developed bones) 2 – Her speech seems muffled, possibly small pipes with oversized adenoids? still under investigation) 3 – She can be a nightmare at meals, messy eater and only eats what she likes So she will pick out the salmon from a stirfry and wants to leave the rest) 4 – Slower than average dressing herself and puzzles. 5 – Cleans up her toys as soon as asked :) unlike her twin sister who is a lazy monkey. 6 – Slower at getting dressed herself, but getting there. 7 – Sleeping was a nightmare as you could hear her at 6am every morning having full conversation with teddy. But now sleeps through (last 4 months or so) 8 – Happy, loving, very funny, cuddly, laughs a lot, tries hard to do whatever asked. Sooo lovely to spend time with. LOVES toddler ballet although it was hysterical at first as she had no grace whatsoever but she laughed all the way through it :)

  • kevin gordon

    i have this and its hard to go to school with that telling people that i have disoder


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