Monday, October 24, 2011

ACC & Moms-To-Be Story #12

I am incredibly thankful to all of the Moms 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.

Michelle, the mom of a 5 1/2 week old baby girl,
contacted me and she expressed a desire to share
her own story.

I got in touch with Michelle through e-mail last week on
a Monday and that same day, within hours, I received her story.

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

Thank you very much, Michelle. 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 pictures , and for your desire to reach out to help other people and offer hope.

Written by Michelle:

When I sat down to write this, it took me a while to pinpoint where I wanted to start because I think the events in my life leading up to this journey are the reasons why we were able to get through what we have with our heads held high.

I met my husband Craig in high school and we married in 2004. In 2007 we had our first child, (a son), who we named Keegan. Keegan is the sunshine of our lives. He was really a perfect baby!! He was always happy, slept well, ate well and just fit into our lives as if he was always there. We call Keegan our “little old soul”. He has such a huge heart and is always sensitive to what is going on around him. When Keegan was around 1 ½, we had a little “whoopsie” and I found out I was pregnant in October of 2008….this is where this crazy journey begins!!!

Although the pregnancy wasn’t planned, we were all very excited. I always wanted to have my children close together because my brother and I are only 13 months apart and I wanted my children to have a close relationship like we have. 4 weeks after I found out I was pregnant, I started showing signs of miscarriage. We went to the hospital and this is when we had learned that the baby we had already grown to love was no longer with us. It was an awful thing to go through, but it was the first time I had miscarried and I knew how common it was. Since the pregnancy wasn’t planned in the first place, we decided to wait a little longer before trying again.

In 2009 I ended up having 2 more miscarriages so my Dr referred me to a fertility clinic for some in depth testing.

By the time I made it to the fertility clinic I was pregnant for a 4th time and they couldn’t do the tests, so we had to wait and see, but unfortunately we lost this baby too.

I always miscarried around 7-8 weeks.

After 4 miscarriages, I ended up getting pregnant again and the Dr at the fertility clinic had learned that there was an antibody in my blood, specifically called Lupus Anticoagulant. Basically, what this means is that my blood is a little thick and there were tiny clots which was not allowing blood flow to the baby and therefore things weren’t developing and no oxygen was getting through and the baby would die.

I was already about 6 weeks pregnant when the Dr found out about the antibody and a week away from the time I would usually miscarry, so I had to see a thrombosis Dr right away so they could decide what they wanted to do about thinning my blood. I was immediately put on Fragmin Injections (a needle to the tummy every day). I had made it to 8 weeks and then started to miscarry again!!! I was devastated BUT- I now knew what the problem was and would fully be prepared the next time I got pregnant. Unfortunately the Fragmin Injections weren’t started in time. The fertility Dr said to me, “do you know how lucky you are to have a reason why you are miscarrying? Some women never know why.” I knew I was lucky!!

So after 5 miscarriages, in December 2010, I found out I was pregnant again and immediately started Fragmin Injections as well as a daily dose of baby aspirin, progesterone suppositories and a super duper prenatal vitamin. 7 weeks passed, then 8 weeks, then 9 weeks…(that was a huge celebration), 10 weeks etc….

We were finally on our way to having a second baby!!!!!!!! I was referred to a high risk OB and had regular ultra sounds to track the baby’s growth.

At about 20 weeks we learned that we would be having a baby girl!! We were so excited. We had a son and now a daughter….people kept saying we would have a Millionaires Family!!!

Aside from feeling a little sick, the pregnancy was going well. In June I started having spells of vertigo, which apparently was unrelated to the pregnancy, but ended up having me leave work 3 months early.

I went in for a routine ultrasound at 33 weeks which was always followed up by a visit with my Dr. My husband didn’t come as he had been to a 3D ultrasound a few weeks before. This was just a typical visit.

When I was having the ultrasound the technician said she had to discuss one of the images with the Dr and would be right back. 15 minutes passed and I honestly didn’t think anything of it!! She came back and said they needed to do a scan on another machine because the machine she was using couldn’t get the right picture, still didn’t think anything of it…

When I went up to see my Dr, I waited in the exam room for about 30 minutes before he came in. When the door opened and I saw his face, I was very nervous.

He said that some things had shown up on the ultrasound and we needed to do further testing to understand exactly what was going on. He explained that both ventricles were enlarged in the baby’s brain and he thought it was likely something called Hydrocephalus which basically meant that there could be pressure on the brain and that there was a blockage and the fluid wasn’t draining properly and that at birth a shunt might have to be put in. BUT- he could not be sure so I had to have a fetal MRI right away.

2 days later I had a fetal MRI and we were meeting with a neurosurgeon right after to discuss their findings. It was at that moment that our world flipped upside down. They thought it was Hydrocephalus, but it was Complete Agenesis of the Corpus Callosum. The neurosurgeon said that he wasn’t the one to discuss this with and that we should speak with the neurologist so he could tell us what types of obstacles we would be facing and how this would affect our baby but basically said that our child would likely be disabled, have delays and challenges, anywhere from being almost normal to completely disabled, but he couldn’t say either way and that the neurologist would be able to give a better idea of what was ahead.

Then, as if things couldn’t get worse, my OB, by law, had to tell us that if after meeting with the neurologist and we were distraught by the news, we also had an option to terminate our pregnancy. WHAT!!!!!!!!!!!!!!!!!!!!! How bad was this? I could tell it was excruciating for him to tell us about this option, but from a legal standpoint, he had to. Some people only want perfect babies!!

My husband and I went home, we were broken. I was so disturbed that I was even thinking about terminating my pregnancy. After what it took to get here and how far along I was. We couldn’t talk to anyone about it because what if the neurologist said we were having a baby that would be a vegetable and have major health complications…do I really want her to live this way, can we live this way!! My mind was RACING!!! It was terrible. We didn’t even do the IPS screening to check for Down Syndrome and Spin bifida. We always said we could handle that.

Every time I felt my little girl kick, I felt like she was kicking me and saying, you better not get rid of me!!! It’s awful, but it’s true, she was living inside me and I had her life in my hands!!!

The Dr’s said not to Google, but I did anyway. I wasn’t looking for medical reports or Dr’s reports; I was looking for real people who had been through the same thing. This is when I came across this exact website. My husband and I read every single entry and cried the whole way through because we knew there was no way we would be terminating this pregnancy. These children are beautiful and full of hope.

I think it was all so overwhelming. Getting the news about what was wrong with our baby and then topping it off with an option to terminate!!! INSANE!!!

We had made the decision NOT to terminate before we had even met with our neurologist. We ended up meeting with him 2 days later. We were in a much better frame of mind and excited about our daughter again. Our visit with him went amazing. We had a list of questions, were in a better frame of mind to take in information and he was very thorough.

Of course as we all know, this diagnoses is not a cookie cutter diagnoses. You can have two children with two exact same MRIs and two completely different outcomes. The Dr said that based on his experience he would put our daughter on the mild end of spectrum with respect to delays, disabilities etc, with the disclaimer that he can’t be sure. This did relieve us a little and gave us a lot of hope. He said the reason her ventricles were enlarged is because the corpus callosum was missing and that they were basically filling up space.

The best way to explain this diagnosis is like this...

When you travel to the cottage, you take the main highway to get there, but, you can also get there by taking the back roads. So yes, the corpus callosum is the main highway, but the back roads work just fine also.
We finally were able to put this behind us and focus again on the arrival of our daughter. I mean we had already been through so much to get to this point!!

Time passed very slowly, my due date was September 1st. Then September 1st came and I was still waiting. My Dr agreed to induce me when I was a week over (THANK GOD)!!

I was induced the morning of September 8th and at 8:36pm, our beautiful daughter Kaycee Lynne was born. I will never forget the moment they held her up and I saw her face and heard her cry. This will sound superficial, and I don’t mean it to be, but she looked normal and sounded normal!!

The paediatricians were in the room and examined her and weighed her (9lbs 5oz) and I finally got to hold my precious girl. My son Keegan was in the waiting room. We wanted him close by because we knew Kaycee would be spending her first 48 hours in the NICU and Keegan wasn’t allowed in there, so the only way he could see her was if it was in Labour and Delivery.

When Keegan came in to meet his new sister, the first thing he wanted to do was look at her toes!! He couldn’t believe how tiny they were!! We were all in love with her and my husband and I were so in love with our family….we were finally complete.

After 45 min with Kaycee they had to take her to the NICU. I got checked into my new room and Craig wheeled me to the NICU so I could see my baby girl. It was hard to be away from her, but I knew she was where she needed to be.

After 48 hours, I was being discharged and knew that I might have to leave the hospital without Kaycee. This was awful. I couldn’t imagine going home without her. I went to the NICU and the Paediatrician was there and he told me that Kaycee was thriving. Her heart was functioning normal, her breathing and oxygen levels were perfect, she was showing no signs of seizures and she was eating like a champ!! (they actually didn’t have diapers that fit her, they only had newborn diapers and we needed size 1…most babies are premies in the NICU). We were allowed to take our baby home!!!

As we are walking out of the NICU with Kaycee in her car seat, I put my hand on Craig’s arm and stopped him, and I said “This journey is finally over”. After 5 miscarriages, and a crazy ride through my pregnancy, we finally have everything we wanted and more.

As I type this, Kaycee is about 5 ½ weeks old. She is as normal and healthy as a newborn could be. I sort of told her she had big shoes to fill because Keegan was such an awesome baby so I think she has really been trying!! She has been following light and sound since about 2 weeks, started smiling at 3 weeks and cooing at 4 weeks. Her head and neck are very strong. I know this is early, but when I look into her eyes, she is connecting with me, she is so engaged. I feel like Kaycee is going to surprise us all!! We are going to push her to be the best she can be. We had to fight to get her here and we will continue to fight for her for the rest of our lives. She is my little miracle.

My son, my husband, our family and friends were the reason we made it through this! We are so fortunate to be surrounded by such amazing people. We always tried to look at the glass half full and I truly believe in the power of positive thinking!!!

I hope our story helps someone out there the way the other story’s on this website helped me. If it does, take the time to post your story, because it is worth it.

Kaycee and her big brother Keegan

Side note: I also want to mention that in the same ultrasound that showed the enlarged ventricles, the ureter in one of Kaycee’s kidneys was enlarged and we are having some tests done to see if urine is going from the kidney to the bladder then back to the kidney. She is on a prophylactic dose of antibiotics to prevent infection, but the Dr is pretty sure this will correct itself by the time she is 2, and if not, it can be corrected with a very un-invasive surgery. So it wasn’t a huge concern, but worth mentioning.

An UPDATE on Kaycee:

(written by Michelle, Kaycee's Mommy, on 5-13-2013)

"I wanted to send an update to let anyone know that has read our story how little Miss Kaycee is doing.

Basically, there has not been one single concern. She is 19 months old, has exceeded every milestone and she is the most chatty little thing you have ever heard, and keeps her big brother in line.

If I didn't know there was anything “missing” in Kaycee’s brain, I wouldn’t know.

I know that we are truly blessed to be on this end of the spectrum, as some children with the exact same diagnoses as Kaycee are not as fortunate.

By posting this, I am in absolutely no way trying to gloat at how truly blessed we feel, I am simply trying to offer one person a glimmer of hope in what may be their darkest moment. For me personally, finding out everything while pregnant and going through what we did, it was this blog that gave me hope and kept me on the positive side.

I hope this can help just one person!!!


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 (Sandie):

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 callosum.

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

Tuesday, October 11, 2011

Neuropsychological Evaluation - Got Questions?

A few months ago, in an ACC support group that I belong to,
there was a discussion in regard to Neuropsychological
Evaluations for kids who have Agenesis of the Corpus
Frequently Asked Questions by parents of a child with ACC:

1. What age should my child have a Neuropsych Eval?
2. What kinds of tests will they give my child?
3. What takes place during an Evaluation?
4. How will a Neuropsych Evaluation help my child?
5. How do they take the test results and apply it?

Because these same types of questions come up on a
regular basis by many parents who have a child with ACC,
I am sharing the detailed discussion here on the blog,
(with permission from the author-parent).

Parent of 7-year-old child with partial ACC writes:

"Here is a list of the tests she had done last November for
her neuropsych eval":

Wechsler Intelligence Scale for Children-4th Edition
Beery-Buketenica Development Test for Visual-Motor Integration
Peabody Picture Vocabulary Test-4th Edition
Expressive One Word Picture Vocabulary Test
Wide Range Achievement Test-4th Edition
Wide Range Assessment of Memory and Learning
Electric Finger tapping Test
Integrated visual and Auditory Continuous Performance Test
Conners-3 Parent/Teacher Rating Scales
Personality Inventory for Children-2nd Edition
Sentence completion Test

The parent diverts to another subject regarding school testing.

The school testing was to see if she qualified for an IEP. Her testing with the school showed she had rare IQ where her nonverbal was 40 points higher than her verbal, which for age 5 only 1% in the world has this score. Her actual performance score compared to where she should be, based on her IQ score, were anywhere between 18-35 points difference.

Parent resumes discussion regarding neuropsychological
testing in a private facility outside of the school.

If you want a thorough neuro-psych eval they usually don't test until
age 6.

It was the best thing for us to get our child testing. Her rare
scores were still there, the neuropsychologist expected it to switch
but they didn't.

Her nonverbal is in the gifted range while her verbal IQ is barely
in the normal range at 81. It did show she has ADHD focus and attention problems.

We found out through the testing that the angular gyrus in the brain
that controls the language part is affected by her ACC. Her auditory
and visual processing is affected. He gave us ideas and tips on how to help her and for the school.

Note: "angular gyrus" located above in green.

The specific wording pertaining to the language comprehension deficit and the angular gyrus, in the 7-year-old child's Neuropsychological Evaluation, states:

"Together with the previously referenced language comprehension deficiency seen through her performance on the Similarities subtest of the WISC-IV, this WRAT-4 difficulty on Sentence Comprehension suggests a specific problem in the region of the angular gyrus in the left cerebral hemisphere."

"Despite her language abstraction difficulty which suggests particular
difficulty in the functioning of the left cerebral hemisphere in the area
of the angular gyrus, there was no lateralized indication of brain dysfunction through either motor or sensory perceptual testing.
Thus, this appears to be a very limited and circumscribed cortical dysfunction. She has much more evidence of normal than abnormal brain functioning."

The Neuropyschological Evaluation further states:

"Her overall intellectual ability and many of her academic skills are entirely within normal limits and sometimes performed at above average levels. However, she has shown persistent and significant difficulty in language comprehension and abstract verbal reasoning that appears to include both spoken language and reading."

The parent of the 7-year-old child with partial ACC goes on to say:

At one point due to her reading decoding skills, they were talking about taking her out of resource for language. With the results of the
testing we had done, she was kept in.

We also found out she is in the mild to moderate range, 1.5 standard deviations for possible autism but not enough to give a diagnosis for autism. The testing as a whole gave us a clearer picture of who my
daughter is and insight into some of her little quirks.

She will get testing done every 2-3 years based on her scores. Our
insurance paid for all but our copays since it was based on a medical diagnosis and not for ADHD testing. You would have to check with your insurance to see if they will pay for testing and how much. This is one testing I have never regretted doing and so glad we did it.

Where we did the testing, we came in for the initial visit so he could meet my child, talk to me about her history and what we were looking for, and for him to decide which tests to perform. Then about 2 weeks later, we were lucky and had a cancellation, we went in for the testing.

We were there from 8:00 to about 4:00 with a lunch break and mini breaks during testing if she needed it. While Emily was testing, I was filling out questionnaires such as Connors-ADHD, and another one that had 200 or so questions-can't remember the name but asked questions for emotional, behavioral, autism questions.

Then 2 weeks later I went back alone for the psychologist to go over the testing.

Some neuropsychologists spread the testing out over 2 days.

Parent of a 5-year-old child with ACC asked if they can get
good test results from a child who is young and fidgety
with an attention span that is not so good?

Reply from Parent of 7-year-old with ACC:

When is his 6th birthday? Many times Neuropsychologists have a
long waiting list or several months before the first appointment so it
wouldn't hurt to call and make the appointment now for right after
his 6th birthday if you are really interested.

In my personal opinion, this was one of the best things I could have done for my child.

This same parent goes on to say:

My child does take a low dose ADHD meds for attention and focus as
well as cognitive skills while in school. She takes 2.5 mg adderall
twice a day. Not long after we started the meds, she jumped by
leaps and bounds in her learning skills at school. She started
taking meds halfway through Kindergarten.

If you have any more questions, please feel free to email me at

Mom of 7-year-old child, partial-ACC, colpocephaly, chiari 1, ADHD, strabismus, hydrocephalus w/VP shunt"

Thank you very much to the parent of a 7-year-old child
with partial ACC who graciously gave permission for me
to share her experience and quote input here pertaining to
her child's Neuropsychological Evaluation for others
to read and also for sharing her e-mail and offering to
answer questions.

In addition, you can read more about Neuropsychological
Evaluations in a previous post that contains test
results from an 11-year-old child's Neuropsychological
Evaluation and also provides additional input from other
parents who have a child with Agenesis of the Corpus

If you have something that you would like to add, please
consider posting your comment.

Medical Disclaimer: Please seek the advice of a qualified
medical doctor regarding any medication and dosage for a
person. Every person with ADHD is different and responds/reacts
differently to medications and dosage amounts.
Some people with ADHD do not require medication.