I had a routine ultrasound and they noticed that the baby’s ventricles looked slighly enlarged. I ended up having a fetal MRI that confirmed ACC. They tell me that they have found no other abnormalities and I will just have to wait until the baby is born to see what we are dealing with. I would appreciate any info from anyone who is or has dealt with this condition.
Hi,
I my son is 8 months old now. When I was pregnant they also found that the ventricals looked different, at first they thought it was hydrophalus and we planned to have surgery to put a shunt in right after he was born. But after he was born they did a CTscan and confirmed that he has complete ACC. When I was pregnant they did an amnio to ensure there wasnt any other genetic issues we would be facing, that is an option for you. The hardest thing is for them to tell you that your baby is missing part of his brain and then tell you that you just have to wait and see how bad it will be. That was how it was with us. And if you read online there is pretty much the same thing said the delays can be anywhere from severe to not much at all.
I have been going crazy since October when my son was born researching meeting people and networking to get as much information as possible. I dont know what you have been able to find but I have tons of information. There is actually a conference on Disorders of the Corpus Callosum in Dallas TX this July, that I am trying hard to raise money to be able to go to.
After we found out what Joshua has I decided to take a leave of absence from work to stay home and help him, not knowing how little or ow sever this would affect him. You will want to get a good pediatric neurologist and get a pediatric ophthamalogist (because many times the optic nerve is affected). I had my sons eyes checked at 2 months and 5 months, so far so good! The best advice I have been given so far is to get involved with Early childhood intervention in your area. When my son was only 6 weeks old I got in contact with them and they come out 3 times a month to work with him and teach me things to help him. Joshua has been meeting all of his milestones on time, even early. He doesnt seem to be affected so far. I have yet to meet anyone with a similar case, because so many times this disorder is associated with other syndromes (making it more severe). I have learned that this may affect him most at the time he becomes shcool aged. But I am glad that I took this time off to be with him since this is such an important time.
Even though it is hard try to enjoy your baby when he/she comes, because you cant predict the future and you cant change it, but you can make the most of what you have now.
I recommend the ACC Network, its associated with the University of Maine, http://www.umaine.edu/edhd/research/accnetwork.htm
they also have a listserv that you can sign up for and get hooked up with others who have this disorder or have children with this. If you email them they will send you a packet filled with research and stories of others with ACC, they also will send you a list of people in your state that are registered and have the disorder so you can network with them.
There is also the NODCC, http://nodcc.org/index.php, they have a lot of information also and explain a lot. Both of these organizations and sites were founded by parents and family of children with ACC.
I would love to stay in touch with you and see how things go. I will answer any of our questions and try to help in any way. I really wish you the best and stay positive. There are a lot of sad stories out there that you will find, but there is a lot of encouraging ones too. Since you have ruled out other abnormalities so far, that is a good sign. When are you due? What are you having?
I hope I helped you. Good luck.
Robin
Hi,
My name is Christie and I have two kids. Jonah, my just-turned 3 year old was diagnosed with ACC at 6 weeks old. After further genetic testing, it turns out that is all he has. I felt exactly the same way Robin did. It was the not knowing what was going to happen next that really worried me. I too spent a lot of time online and researching and always came up with people having some type of disability. Robin gave you all the right things to do. Jonah was tested by all of the different drs (eyes, ears, etc.) Thankfully, everything turned out okay. When he was about 1 1/2, we were concerned with his lack of speech. He babbled an awful lot and his receptive language was good but he wasn’t saying any words. At about the same time, he started once a week speech therapy with Early Steps and Children’s speech dept. Also, I enrolled him in a mother’s day out program, three mornings a week just like his big sis went to. He went from no words to sentences in no time. Every time I would pick him up from school, his teacher would have a list of words that Jonah had said. He just finished school for the Summer and the teachers have told me they call Jonah the little genius because he is the most verbal child there. He also knows his colors, shapes, numbers up to 20, most of the alphabet, how to spell his name. I could go on and on. He is very happy and loving. And I can go through more than one day now not thinking about the ACC. It took a long time for me to sit back and relax. Now, I don’t know what his future holds as far as higher education, but we are taking it one day at a time.
One thing I would recommend is to enjoy your baby. Once you get into a routine with the baby (and actually getting some sleep again) make everything a learning experience. I am home full time with Jonah so I was able to play with him a lot, read to him, and just talk to him all day. If I was carrying him somewhere, I would tell him what I was doing, what color something was, etc. Even when he was just a few months old. Your baby is making new neural pathways every day so stimulate him.
Good luck to you and if you ever need anything let me know.
Sincerely,
Christie Dannewitz
Hi, I too had a U/S done last week and they told me that my baby has Isolated ACC…and they don’t think anything else is affected. But they told me that we will not know anything until he is born. I have 7 weeks left, and just the last week has been the worst week of my life. I havn’t slept much and everytime he moves I think about it!! I am getting an In Utero MRI done on Monday, and they said they should know more then?? I am really nervous!! How much longer do you have until your due date?
It is nice to talk to people who are going or have gone through the same thing! It is encouraging! Even though it is STILL so scary to me
Melissa
I have the same story as Robin and Christie…My 10.5 month old son has
C-ACC and that is about it so far. Also had enlarged ventricle veins in his
brain during pregnancy and when he was born an ultrasound and an MRI
confirmed the ACC. He is developing wonderfully and we hope it stays that
way. The best advice I can give you is take it day by day…don’t go crazy
- just love your baby as if there was nothing wrong > well actually, all we
have is a name of a condition and a missing part in the brain so as long as
there is nothing else that needs immediate attention - our kids should not
be any different from others. All we can do is hope for the best since we
do not know what the future holds - and this is the one time that even the
doctors wont have an answer for us…Don’t let fear from the unknown take
over your life! It will be ok - I promise you :o)
Good luck to you and please feel free to contact me anytime with questions
or comments :o)
Rinat
(Mother to Yonatan, C-ACC / 10.5 months old)
-----Original Message-----
From: dannewitzchristie [mailto:agenesiscc-cpt3560@lists.careplace.com]
Sent: Friday, June 01, 2007 11:33 AM
To: kipi@comcast.net
Subject: Re: [agenesiscc] ACC diagnosed inutero
I am Crystie, my story is a lot like Christie D.'s. My son was diagnosed at 5 months and has been very fortunate so far to act like any other child. He is very smart, can count to 10, knows his ABC’s, knows names faces, places, objects, better then i do. Still working on speech but he has come along great! I to dont know what the future holds but I am soo looking forward to learning and growing with him. My son is now 2.5 years old.
Crystie
dannewitzchristie agenesiscc-cpt3560@lists.careplace.com wrote:
Robin,
Hi my name is Connie and I was reading your message and I went through the exact same pregnancy and the exact same info was given to me from my doctors. My daughter Sarrah is about to turn 7 and she has really no other problems except ACC. Mind you she is reallly delayed but she is walking or should I say running and and gets her point across through sign and minimal vocalization. She is the 3rd of 4 siblings and she hangs just fine with them. I would love to talk to you more and let you know what worked with us and what didn’t. You are right that their is not a lot of info out there for kids with only ACC and not alot of other problems.
Talk to you soon.
Connie Bunce
RobinMartin agenesiscc-cpt3560@lists.careplace.com wrote:
Wow - these messages bring back so many memories. My 5 year old also has c-acc and has not been diagnosed with any other genetic abnormalities. I remember the pregnancy, the ultrasounds, the MRI and the diagnosis like it was yesterday. I found a lot of comfort through the ACC network and by learning about others online. What I didn’t know and wish I would have is that having a baby is stessfull, but having a baby with a special needs diagnosis is really hard. So, if I could have given myself advise back when Jackson was first born, I would have told myself: Don’t beat yourself up- you didn’t do anything wrong. Love him and bond with him, even if he won’t look into your eyes. Breastfeeding sucks - try it, but don’t torture yourself or the baby over it. Reflux is gonna probably happen so be prepared. Husbands will deal with things differently - so give him time. Get yourself on a sleep schedule that will allow you to rest and not be so hormonal - so you can deal with family, friends and Doctors easier. Most of all- it’s okay to greive over the thoughts that everything will be perfect for this child. All children have some challenges, ours will just have different challenges. This greiving process is not giving up on your child - in part it is accepting who he is and loving him for all the joy he will bring in his own way.
Well - that is what I would have told myself back then - If I only knew then what I know now.
My son is a bouncing, loving, charasmatic boy with developmental delays, ADHD and Autistic symptoms, and Sensory problems. But we wouldn’t trade him for anything because he loves so unconditionally and finds joy in the simplest things. He keeps us grounded. We don’t have any other children and so far we feel satisfied with only having him.
Hello. I know exactly what you are going through, too. I have a 21 mo. old daughter, Eden with C-ACC. It was also found in an ultrasound at 18 weeks. At first they noticed the dilated ventricles and later realized the ACC. The first thing that we noticed after she was born was that she was having what we thought were infant spasms. At 10 days old, we took her to the ER and she was actually having seizures. That is something I have learned is pretty normal with ACC. Since then they have gotten worse and harder to control. Also, she is delayed quite a bit. She is still not crawling or walking. She has just in the last week started to put weight on her legs. That is a huge accomplishment to me! My advice to you would be to hang in there, hope for the best, but be prepared for the worst. Be sure and get involved in whatever early intervention program your state has. The first thing I noticed about Eden’s development being delayed was that she wouldn’t reach out for toys and wouldn’t hold on to rattlers. Always look for anything like that and if there is a delay, get your baby into Physical or Occupational therapy as soon as possible. We didn’t realize we needed to do that until she was 6 mos. old and as soon as she started, she was meeting milestones. Eden is a real joy to have. She is the happiest and sweetest child. She is also very smart. She just has trouble with the physical part of everything. Good Luck with your baby and I hope this has helped you in some way.
We found out about 3.5 weeks ago that our son has Complete ACC (inutero). . . it hasn’t been easy (honestly), but I continue to try to educate myself online as much as possible. My husband is overseas so I can’t make sure he’s handling this information ok, but we’re trying. We also have an enlarged ventricle but I haven’t really even thought about what that means. The NODCC website was informative, but the ACC Network through the Univ. of Maine seemed to break symptoms down a little more, regarding common to other occurences whereas NODCC name the syndromes with the symptoms; both are informative. We did the amniocentesis and were told that there are no chromosomal disorders to complicate the situation, but similarily were told it is a waiting game to see what will occur with our son and how/ if he meets certain milestones while developing after birth. Most frustrating I can’t seem to get any definitive information from my doctors and am just told that further ultrasounds will be done to monitor his growth inutero. I was told by some people that an MRI after birth is something to do as immediately as possible and start early intervention as soon as possible. The ACC Network lists differing specialists we may be in need of as well as educational strategies so it does give me an ability to “try” to prepare. We feel blessed to have a son and he will be our third child, I just hope we are adequately prepared for his arrival.
Please write and tell me about any info you come across our advice as you proceed. GOD BLESS!
Wow, as I have been sitting and reading all of your stories, I am amazed how similar some are to mine. My pregnancy was normal until 20 weeks when they found enlarged ventricles. through further testing we were told the baby would have hydrocephalus. Fast forward to his birth (via C Section)…specialist told my husband in the OR that our son did not have hydrocephalus and we were thrilled, relieved, elated…you name the happy adjective. The following day, the pediatrician confirmed that baby did not have hydro and instead had CACC. I will never forget her spelling it for me and me writing on a response card to subscribe to Glamour magazine…all the painkillers must have been taking a toll on my mental state because I remember saying “oh, that’s good!” Keep in mind I had NO idea what ACC was or what it would mean for my beautiful new baby. My Jimmy is now 2 and 1/2 and as I said in a previous post, has met all milestones ( though some on the tail end), he had a strong suck and nursed right away and did so for 9 mos. He is smart, gets jokes, makes jokes, charms perfect strangers and though his speech is tough to understand at times he knows enough to yell that he needs shoes and money(“Mom, I want shoes, I want mooney!”) when he hears the familiar sound of the ice cream truck. His sweet smile and personality will help him when the words fail him I hope. I recently had a new baby girl and while this pregnancy was stressful in it’s own way, I knew I was carrying a healthy baby and when I could sleep, I slept knowing it would all be ok this time. It is hard to carry a baby when doctors are telling you terrible possibilities. Remember, this is your baby and once you lay eyes on him or her, you will know that your baby is perfectly your baby and corpus collosum or not, you won’t love them any more or any less.Good luck to the pregnant mommies!!
It’s wonderful to see you being so proactive with your son. I wish I had support when my Cory was young. Cory is now 21 years old ( a whole new form of scary!) and while he struggles yet with some aspects he is truly a remarkable young man. He works full time on our cranberry marsh and is also a volunteer firmean who has passed 2 levels of firefighting. I smiled when I read your comment about your son’s sunny disposition being able to get him by when the world gets tough because that is so my Cory. He is the kindest, most thoughtful human being I know. Remember this though when your son enters his school years because that wonderful personality can cause well meaning teachers to allow your son to advance when he really shouldn’t because they don’t want to see the hurt in your wonderful childs face. When Cory reached 5th grade I pulled him from public schools and home schooled him for one year to get him caught up before entering middle school. It was well worth it.
Cory was able to have most of his classes with the mainstream students but did have a few classes that were labeled as special education. ACC doesn’t mean your child can’t learn, it just means that the school needs to help you and your son figure out how he can learn. Our school district made sure Cory had the option of having test read to him and letting him repsond verbally because writing for Cory is pure torture. I was also allowed to go into school and read assignments to Cory because he has no reading comprehension. He can look at a page and read very well but ask him 30 seconds later what he read and he has no idea. If you read a book to him though he can very easily tell you what happened an offer a very intelligent discussion on the book. I guess what I’m trying to say is never give up on the idea that your son can learn. You just have to find the best way for him to learn. An interesting tidbit with Cory and then I’ll stop “talking.” “Poor Cory” sailed
through school with a C- average because it was just “too hard.” Yet his junior year in high school he took a tractor safety course. He loves tractors and from the age of 3 could look at a tire track in the dirt or snow and tell you exactly what type of tractor or truck made the mark and what it was used for and if the truck or tractor had an empty or full load. Cory passed this course with a 98%. The next closest in this class of “normal learning” students had a 77%. Your child can learn. He will have a wonderful life. Especially with your help and support.
Lisa
Hope4my agenesiscc-cpt3560@lists.careplace.com wrote:
Lisa,
Thank you for all the wonderful information you shared about Cory. It
sounds like he is doing very well! I’d like to ask you a bunch of questions, but
please do not take offense if they seem ridiculous. You are the expert here
and I am trying to learn what to expect for my son. I think I have been so
accepting for the past 2 years that I did not want to know and now, since the
birth of my new baby girl (no acc) I just have this overwhelming need to
know. I guess I am wondering down deep if she will someday have to take care of
him in some ways. What do you think based on Cory? Also, can you “talk” a
bit about his social stuff…friends? Does he have girlfriends and date?
Drive? If so, on time? Is he outgoing? I get the impression that he has a
great personality that has helped since you commented on mine about Jimmy. Does
Cory have siblings? I hope I am not too nosy or too personal…just so
curious!
Thank you for such a warm introduction to Cory. I look forward to learning
more about him!
Nicole
************************************** See what’s free at http://www.aol.com.
Hi Nicole,
I’m very happy to share what I can about Cory. The question about his social life is a very good one. It has always been the one part of Cory that makes me sad. He is friendly with alot of people, but I don’t think he has one person that he can call a friend. I cry about this on many occasions. He has always been able to talk for hours with adults and continues to count my friends as his closest friends. That’s fine with me because I get to spend time with him but I still want more for him. He has never had a girlfriend. I think he asked a girl out once and she turned him down and beacuse he gets his feelings hurt so easily he has never wanted to try again. My feeling is that because Cory was in special education classes in high school, he was labeled by the other students as maybe not being worthy of their social attention and so was never included in the regular social situations that the other kids did. I’ll share what I feel is a truly remarkable fact about
Cory. In addition to his ACC he has a cyst pressing on his cerrebellum causing him to have balance issues and also has occular motor apraxia which means he can only see clearly in a small space and then he has to visibly move his head over to see the next clear spot. Makes reading a real chore! But back to the remarkable fact, Cory was in track for 2 years in high school. His event? 400 meter hurdles! I cried every time I watched him because I was just so proud! Cory does drive, but we limit the distance he drives only because I don’t feel he is a good enough driver to be going long distances or driving in larger towns.
Yes, Cory does have a younger brother. I wish I could say they were good friends, but there are some definite anger issues between the two. I think Cory resents that Jesse (his brother) is “normal” and has a girlfriend and lots of friends and frankly I understand, but Cory has trouble controlling his feelings and has hit his brother a little too hard a few times. This has become less of an issue in the past 2 years but I don’t think they will ever be best friends. Its very interesting to me because Cory is very protective of other people.
I am so happy that your little girl is well so that you have at least one less worry. Now that I have rambled on and on about Cory, I would love to hear more about Jimmy. Never having met anyone else that has a child with ACC I’m very interested to know what other parents are experiencing. Contact me anytime!
Lisa
Hope4my agenesiscc-cpt3560@lists.careplace.com wrote:
In a message dated 6/19/2007 12:09:57 P.M. Eastern Standard Time,
agenesiscc-cpt3560@lists.careplace.com writes:
http://www.careplace.com/forum/topic/3560
Hi Lisa,
Thank you for sharing about Cory’s social issues. It is interesting that he
enjoys the company of grown ups yet understandable since they are more
accepting of others than his peers, I am sure. It sounds like he and his brothers
will have to work out their issues at some point, but it is so normal to
have sibling issues, right?
As for the kids…kids are mean and I dread the day someone is mean to mine.
I will have an overwhelming desire to hurt the person (s) who hurt Jimmy.
How did you handle it in a more appropriate way?
About Jimmy…as I said before he is a charmer and “flirts” with strangers
and family. He can get people to do what he wants (esp. his grandparents)
with limited words and lots of gestures. He talks, but is hard to understand
for most people much of the time. He leaves the beginning or the end off the
word so once you have his pattern, you can kinda figure it out. (I want
outs…he wants outside). Words like No!, apple juice, nack (for snack), bye-bye
are perfectly clear. Today he wanted to go to Target and ride in the cart but
only said I want Toga I want cart.(I knew what he meant though )
He is in a play group with children and mommies we met when all the children
were less than 3 mos. old yet tends to hang back and watch the kids at the
playground or park. Now that the weather is warmer, we have been swimming
with the same group (there are 7 of them) and he is more of a leader in the
pool. He typically takes 20 min. to warm up and then participates more actively.
Lately, he has been more eager to get involved sooner than later, but I am
not sure if it is him changing or just the fact that he is more comfortable
with everyone (prior to the new baby, I worked full time so we did not meet
with the whole group too of ten and they continued to meet weekly so it seemed
they were more bonded).
Jimmy has received OT, PT and speech through our state EI system. He no
longer qualified as of age 2, though I do think he could use speech again for
reasons abpve. He was in private PT for poor trunk strength and made great
progress. He can jump, run (though a little awkardly) and climb a flight of
stairs holding the railing only, he can do several steps independently without
holding on, but not a full flight. Is that really a bad thing anyway? I
pulled him out of private PT when my baby came prematurely and I thought my plate
was full and JImmy was doing so well, and insurance was not going to cover
it anymore (that played a large part though I mentioned it last).
Jimmy has adducted thumbs…the tendon did not fully develop. He can use
his hands (and thumb) to hold a cup, crayon,etc., but I don’t know if he will
fatigue early when it comes time for school. I am a regular ed. first grade
teacher so I am very concerned about that part.
Well, I feel like I have babbled on about Jimmy.
Can I ask another question about Cory? Is he able or do you think he will
live independently?
I keep thinking about all these things lately, as I said since the birth of
my baby Alexandra and wondering if the task of helping JImmy will one day fall
on her and it is just a lot to wonder sometimes.
Thanks for all the information again!
Nicole
************************************** See what’s free at http://www.aol.com.
Hello
I dont know how you got this e mail address, you might want my wife at tmb366@yahoo.com it is her daughter that has this disability.
Thanks
Hassan
----- Original Message ----
From: Hope4my agenesiscc-cpt3560@lists.careplace.com
To: has1960@yahoo.com
Sent: Wednesday, June 20, 2007 11:51:14 PM
Subject: Re: [agenesiscc] ACC diagnosed inutero
Thanks to everyone for sharing their stories. I am pregnant with twin boys who are due in December. We recently had an ultrasound that showed enlarged ventricles on Twin B’s brain. We went for an MRI which showed that he has complete ACC. The reason the ventricles are enlarged is because they are taking up the space where the corpus callosum would have been. They told us that the ACC is an isolated finding. So far, they have not been able to find any other issues. I am thinking of having an amnio in the future to rule out other syndromes but at this point, I don’t want to risk a preterm delivery so I will have to wait a while.
Thanks for sharing your story, I was also diagnosed in utero with isolated ACC. This was first detected by enlarged ventricles during routine ultrasound and they were enlarged for the same reason.
My daughter is now 16 months old. She was born healthy and she has developed normally in all areas. We have been watching her development closely with a pediatrician and occupational therapists and she continues to meet or exceed all her milestones and appears to be a perfectly normal and happy little girl.
I hope that this story will provide you with some hope - when I was pregnant it was a very stressful time because all the information I could find said that she had a fairly grim prognosis but ACC is appearing to not necessarily be symptomatic, or to carry subtle and otherwise undetectable nuances (hand eye coordination etc.).
My labour was normal but also stressful because the drs. had all told me that we would have to “wait and see” if she would be OK and this took away some of the beauty of my birthing experience. I hope that this doesn’t happen for you.
Jen
smalone agenesiscc-cpt3560@lists.careplace.com wrote:
Beautiful story, thanks for sharing! We were not diagnosed in utero in spite of lots of tech. We did not find out about Rafi’s DCC until he had been born dead and on life support for a month, the first week and a half on ECMO. Then it was anticlimactic (Hey there is good and bad news - the good news is no brain bleeds, the bad news is we don’t think he has a CC) and so we have simply taken it as it comes.
Jane in MN
Myrica agenesiscc-cpt3560@lists.careplace.com wrote:
Your story is beautiful too, thank you for sharing as well. I was happy to read in your previous posts that Rafi is a happy little boy.
rafismom agenesiscc-cpt3560@lists.careplace.com wrote: