Wednesday, April 25, 2012

Meet Joe - An Adult with ACC

I am writing on behalf of my son Joe who is 19 years old now. The responses are a collaboration of our combined responses.

When did you find out that you have ACC? How old?

I found out that he had complete ACC at the time of birth. I had complications, but they were unidentifiable until he was actually born, at which time they did a scan of his head. It was then confirmed. I did not actually let Joe know until he was about 15 years old. At the time I was told, there was not much information available regarding ACC. I was told by doctors that there were cases with partial ACC where the child experienced developmental delays and/or seizures. We were at doctors for the first three years testing and looking out for the worst. Thankfully, there was nothing remarkable happening. Nothing that needed immediate medical attention.

What did you struggle with in school?

Joe had problems that were evident in preschool. He was extremely attached to family and expressed no desire to go to school. Once he was enrolled, it was a teacher in first grade that suggested I take him to a public school where there would be more resources to help with his education (he was in a private school). Once I switched him (mid-year), he was tested, but they could not justify additional help. It was not until we moved to a different school district (in 3rd grade), that his teacher identified A.D.D. Joe did not have the hyperactivity that is usually associated with A.D.D, but he was very disorganized. This lasted throughout all of grade school, where turning in schoolwork was the biggest challenge. Once he got to Jr. High, he was placed in an "emotional disorder" class. That was his first opportunity to excel a bit more. Once he went on to H.S. he was also placed into an "emotional disorder" class that helped throughout all four years. Although the schools knew of his ACC, that was never taken into consideration. All help was really based partly on his A.D.D., and associated struggles.               

What did you enjoy most about school?

There was nothing really enjoyable about grade school. He pretty much hated the fact that the teachers were unable to assist him, or understand what he was feeling. In his words, they made him feel as if he were a "stupid, slow kid". The other children bullied him constantly. The better years were in Jr, and H.S. where the teachers were more understanding and motivating. He started to read books, and found interests in reading. He also enjoyed some math.

Did you struggle with social skills in school?

Yes, again, there was nothing enjoyable related to grade school. Socially, even Jr. High was a little tough. It was not until H.S. with a whole new crowd that he was able to make some new friends. Not too many, but due to the fact that Joe is grounded, and that the confidence he has with his family has somewhat transferred, he did better and has managed to keep some friends. Joe also attended church groups, and trips (with the same group of children since 3rd grade), but was not very outgoing. The Pastors and others at the church were instrumental in helping him get out of his shell during the trips. He had no problem bonding with older people, and again with older family members.

Do you struggle today with social skills as an adult?

Joe is not very outgoing. With family and close friends, he is fun and outgoing, but not much past that. He has cared much for grandparents since a young age and was always a favorite for that. He is very comprehending and warm at heart, almost like an old soul, but again, not too much with people his own age.

Did you attend a mainstream classroom?

This was pretty much explained in "school struggles".

Did you receive Special Ed resource help?

To a certain extent, and again, it was most in relation to the A.D.D. Joe took medication from 3rd grade through the end of Freshman year for A.D.D. He also took some anti-anxiety meds for a couple of years, but my feeling is that is was mostly due to the fact that he was having such a difficult time socially. He also had to see a Psychiatrist to dispense the medication, but as he grew older and started coping with the social issues (end of Jr. High and HS), we found no need to continue.

Can you ride a bike or drive a car?

Joe had an extremely difficult time learning to ride a bike. He first could not do it alltogether, but then after he learned, he could not start off. He finally got it at about 15 years old, when he wanted to go out with friends and he felt pressured to learn. As for driving a car, the A.D.D and obsession with driving video games helped out much there. Joe learned how to safely drive a car at 16. He got his license at 17 and has been an excellent driver since.

Did you attend college? Did you get a degree?

Joe was told that he would be able to attend college, but only if he were to just focus on one, maybe two courses per period. Towards the middle of Sr. Year, Joe approached me with the thought of joining the military since he read much on armory (books). At first I was hesitant, but he convinced me. I agreed to him joining, but I had a preference as to the area, or section. Joe was told he had to lose about 40 lbs to make weight and study for the ASVAB (Armed Services Vocational Aptitude Battery). It has been a long struggle, but Joe lost all the weight and studied. However, I think the largest obstacle is fear of being on his own. I would not necessarily say that it is fear of going, but more of not being around family.


I noticed that there is so much now on the internet related to ACC that was not there before. I wish there were more related to adults but some of these stories on here have still given some insight. The main difference is that Joe is otherwise a very healthy individual. His eyesight is better than 20/20 and he loves to run, and weight lift now. He still loves reading on weaponry and volunteers (with adults) at the church service weekly.

We wonder if/what there is anything else to face, or if there are cases that may be more similar to his. He is still very shy with people he does not already know, but working at becoming more outgoing.

Vilma M

I am grateful to Joe and his mother, Vilma, for contributing Joe's personal ACC story and for making it available here on the ACC blog for others to read. Thank you very much Joe and Vilma for taking the time to touch the lives of other people.

Like Joe's mother wrote earlier, I also "wish there were more [information] related to adults" [who have ACC].

It is always very interesting and helpful to read more about adults who have agenesis of the corpus callosum. Their unique input and inside perspective is invaluable.

I am so happy that Joe's mother contacted me and expressed their two-fold desire to tell Joe's Story. 

Joe's mother, Vilma, expressed an interest in hearing from other families who have a grown adult son or daughter with ACC who have similarities with her son, Joe. 

If you would like to contact Vilma, please leave a comment here for her. 

In addition, if you would like to post a note for Joe in regard to his ACC Story, please leave a comment for Joe. 

I know that they would enjoy hearing from you.

If you are an adult who has ACC or a corpus callosum
disorder, do you want to share your story?

Each person is unique. Every story is welcome and
every story is worthy.

I would love to hear from you. Please send me an e-mail

Friday, April 20, 2012

ACC & Moms-To-Be Story #13

I am incredibly thankful to all of the Moms and Dads who
want to tell their story about being pregnant and having
a baby with Agenesis of the Corpus Callosum.

Each story is as unique as each child who has ACC.

I believe that every story told will ultimately
reach out and touch the life of someone else in
very special ways.

Christina, the mom of an adorable baby girl,
expressed a desire to share her own story.

I am so grateful to be able to include Christina's ACC
Pregnancy Story here.

Thank you very much, Christina. It is truly a privilege to
be able to post your story here on the blog for others to
read. I want to thank you from my heart for your willingness
to express your story in words and for your desire to reach out to help others and offer hope.

"The Story of Our Little Superhero"

I should start by saying this is still very hard for me to write, but I would like other mothers to benefit from my story, as I have benefited from theirs.

My daughter was born on September 2nd 2011 at 7:07pm.

My daughter's pregnancy was completely planned--we wanted to become pregnant by a certain date, or we would wait a while for my husband to finish his schooling. I found out I was pregnant, and we couldn't believe it worked. I had a great pregnancy early on, with the exception of a TON of morning sickness. All I could think about was whether we were having a boy or a girl, how I would decorate the room etc. I took all the precautions--never took a hot bath, took prenatal vitamins, avoided certain foods and started sleeping on my side right away. I had many Moms tell me I was overreacting, but I didn't want anything to go wrong. I had no clue about the uphill battle we were about to face.

At our 20 week ultrasound, we found out we were having a baby girl. We left the ultrasound room, and were told to wait in the lobby. We didn't think much about it, and started texting and calling family and friends to tell them the news. Finally, a nurse came and asked us to follow her to a conference room. Right away, I knew something was wrong. We sat down, and she told us that our baby was "missing part of her brain", and that we would have to "start seeing specialists right away" and that the ultrasound techs "never got anything wrong". I started crying so hard, I was almost screaming. I never met this nurse, and she was telling me the worst news of my life. She even told me "look at me, you're going to be ok"... like she had any idea of what I was going through.

My husband and I sat there and cried and even told the nurse to leave the room. I had so many thoughts going through my mind--would I lose the baby? Why did this happen to me? What does my daughter's future look like? I never felt so horrible in my entire life. The nurse made me feel as if our only option was to terminate the pregnancy, which made me just feel sick and the lowest ever. The nurse took us to see our doctor, in order to answer any questions. While waiting to see my doctor, I heard other babies crying, and I kept thinking "Will I be able to hear my baby cry?" and it made me fall apart. My husband had to put his hands over my ears so I wouldn't hear the other babies. I work at a hospital that serves children with severe mental disabilities. Needless to say, my mind was going crazy. Our doctor was able to explain what was going on in a clearer and more positive manner. She told us the ultrasound machines may have missed her corpus callosum, and that we need to have a follow up appointment with better ultrasound equipment to check us out. She even told us that in her professional experience, she has worked with 1 baby who was diagnosed with ACC and that the baby turned out to be a happy, healthy baby. She explained to us what ACC was, and what we had to do from here on out.

I remember going home, and feeling completely numb. I didn't want to talk to anyone but my husband. We didn't know what to expect, think or feel. We ran through every scenario, and nothing really made me feel better. My doctor told me not to Google anything, and I tried really hard not to. But of course, I did and only found stories detailing the worst case scenarios. I kept clinging to the hope that the ultrasound machine made a mistake, and that we would be told everything would be normal. I didn’t sleep at all that night.

The next day, we met with a perinatologist to do another ultrasound. We found out that he also did not see her corpus callosum, but emphasized that he saw a "little line" that may be her corpus callosum, and that we wont be sure until we get an MRI. The doctor also told us that her ventricles were enlarged, and the MRI would give us exact measurements. I felt like I was hit by a truck, and that everything I planned for was gone. The doctor reassured us and told us that she doesn't look like she has other abnormalities, which is a good sign. He didn't want to do any genetic testing until I had the baby, as it might induce me and set off an early birth. We were to come back to this doctor in six weeks for another follow up.

Although I was extremely sad, anxious and tense, I kept having hope and staying positive by feeling my daughter's kicks. She kicked so much! She would even wake me up at night! Every time I felt her move, I kept telling myself that this was her way of saying "Mommy, I'm OK".

During the rest of the pregnancy, I kept clinging to the hope that our daughter did not have other abnormalities and that if I worked with her, she would be OK. We met with so many specialists--perinatologists, neurologists, neonatologists. I tried everything I could do to learn more. But, like most Moms, I couldn't really find anything.

My husband took a legal internship 2 hours away from me, making things a bit worse. At about 26 weeks, I started noticing my hands swelling. Just to be safe, I had a nurse at my work take my blood pressure and it was pretty high. I called my doctor, and she told me just to go home and relax. Of course, I couldn't. I went home, tried to relax, then went to a grocery store to get my blood pressure checked and it was way, way higher. I called the doctor and I was to go to the emergency room immediately. My sister in-law picked me up, and as much as I didn’t want to be admitted, we were admitted right away.

My husband was able to rush and meet me at the hospital, and luckily everything was fine. I was diagnosed with pregnancy induced hypertension, and from there until I was due, I was to have 3 appointments every week with the perinatologist to monitor my amniotic fluid levels, check the baby's heartbeat and make sure she didn't arrive early. I was also put on bed rest for 5 days.

On top of everything else, I now had high blood pressure. I felt like a failure, like I was not meant to be a Mom. Like this was nature's way of telling me that my body was not meant to have babies. To this day, I still feel like this. I still run every scenario through my mind to try and figure out why this happened--was it the car accident I was in at 10 weeks (doctor says no). Was it because I took too hot of a bath? Did I eat something wrong? This still runs through my head, despite all of my doctor's reassurances.

When I went in for the fetal MRI, I was extremely nervous (and hungry), and was anxious to see the results. When I took the fetal MRI, I was so nervous to see the results. The MRI itself was not as bad as I thought, as I was able to have my husband stay in the room with me, and I had my family there for support.

About 4 days later, we met with our doctor and the MRI showed that my daughter was for sure missing her corpus callosum, and that her ventricles were still enlarged. She was definitely diagnosed with agenesis of the corpus callosum.

I remember hearing this for the first time, and I just cried. I cried, and I was so scared, as I didn't know what any of this meant. I remember hearing a song on the radio about love and heartbreak, and crying hysterically because I wondered whether or not my daughter would ever fall in love, or experience life like a normal girl. The most frustrating part (and continues to this day), is that nobody could tell me exactly what it meant for my daughter. I would have to wait and learn.

Aside from all of the appointments, and constant worry, everything else was going OK. My daughter was presenting feet-down, so we were planning on having a scheduled c-section on September 10th. However, on August 26th I felt somewhat of a tear in my lower abdomen. I thought my water broke, but I was wrong, and later found out it was my daughter turning! We went in for an ultrasound and found out she was head-down. We were now going to have a vaginal birth. This little girl had a mind of her own! My blood pressure continued to rise, so my doctor decided to schedule an induction. After scheduling my induction, my doctor gave me the kindest words a pregnant mother can hear--"You've done your job."

My daughter was born on September 2nd 2011 at 7:07pm, 5 lbs 0oz, 18.8 inches. I was in labor a total of 36 hours. After pushing for 2.5 hours, my daughter arrived with the cord wrapped around her neck and was ghostly white due to lack of oxygen. She was already scheduled for a NICU stay due to her diagnosis, so the nurses and neonatologist were already on hand ready to take her to the NICU. The original plan was that I would be able to hold her for a while, then proceed to the NICU. However, because of the cord, she was quickly shipped away. The first words I heard after she is born is "we have to resuscitate"... I never felt so alert in my life. I was not exhausted, or tired, all I wanted to do was know what was going on. I saw her for a few seconds before she left. My husband quickly followed the NICU doctors and nurses, while my Grama waited with me to get stitched up and recover. The entire time I just remember wanting everything to be over so I could see her. However, the nurses wouldn't let me go to the NICU until I spent 2 hours in recovery.

When I finally saw her, I was devastated. She was attached to a breathing machine, with the mask covering her entire face, and cords attached all over her body. To this day, I can't look at the pictures without crying. However, at the time, I found my inner strength and held it together for my baby. I read to her that night, and slept in my own recovery room while my husband slept in her NICU room (we had our own individual NICU room).

We were in the NICU for a total of 5 days. My husband slept there 2 nights and I slept there 2 nights. We had a system worked out with my mother in-law so that my daughter was never alone in the NICU. I am eternally grateful to my mother in-law for this, as it was really important to us that she was never alone. Although the hospital staff was very nice, I couldn't bear the thought of her having a volunteer hold her, or have a nurse feed her.

Going home was exciting! We were sent home on a BiliBlanket, which made things difficult, but we were happy to be home.

My daughter is currently in the Birth-to-Three program, receiving services for Physical Therapy. At 6 weeks, her motor skills and fine motor skills were only in the 1 percentile. We don't know if this is due to her size (she was born small, and therefore lacked the muscle development), or the ACC.

My daughter is now 7.5 months, and she is doing great! She laughs, smiles and lets you know when she wants her way! I couldn't ask for a more perfect baby. She still receives weekly physical therapy, but so far, has been on par developmentally. She will see a neurologist every 6 months to check her development and to see if any hydrocephalus appears (she had enlarged ventricles in the womb, but have since continued to go down). Some things I have noticed is that she always picks up new skills with her left side first--she then develops the skill on her right side a few weeks later. The neurologist did not have an explanation for this, but said it is no cause for alarm.

Some days, I completely forget that she has ACC. Other days, I can't seem to get it out of my mind. She seems like a "normal" baby now, but I worry that down the line, she will start showing symptoms (as a lot of children with ACC do). I worry that she won't have any friends, or won't be able to do some of the things we did as children. But I’ve learned to not dread on the "what ifs", as I won't be able to enjoy the beautiful baby in front of me.

We also constantly debate whether or not we should tell our daughter, and others, about her diagnosis. What if she turns out "ok", and uses her diagnosis as a crutch? What if she finds out later down the line, and learns to resent us for it? I also hesitate telling others, as I don't want them to treat her differently, or tell me stories of someone they knew with ACC. There are children at my work who are diagnosed with ACC, and for this reason, I won’t tell my coworkers, as I worry they will compare my daughter to these children.

Despite the difficulties, I am thankful that I have such a beautiful, intelligent, amazing little girl. I love her smiles, her cute little toes, her LONG, curly, crazy, dark hair, her beautiful blue eyes. She's going to change the world someday, and I'm going to be there the entire time, cheering her on!

There are many different stories and outcomes of ACC and Moms-To-Be.

I welcome every story.

Do you:

Have questions?
Need support?
Want information?
Have encouragement to give?

Do you want to share your own ACC story here?

If you do, please leave a comment below or you can E-mail me:

Want to talk to other moms who have been there and
understand? Join the ACC Listserv e-mail support group.

I hope to continue sharing more of these ACC and Moms-to-Be
stories out in the open in an effort to inform, encourage,
support and help other moms (and dads) out there who are being
told that their baby in utero has agenesis of the corpus

This ACC and Moms-To-Be section will always remain open
and available to anyone who would like to tell their story.