Friday, July 16, 2010

ACC and Moms-To-Be #3 story

This is the third story about ACC and Moms-To-Be.

The third story was written as a letter last month
and given to me to pass along to a Mommy-To-Be
that I was e-mailing with who had just received the
news that her baby has ACC. The Mom-to-Be wanted
some input from other parents.

When I decided to create this new ACC and Moms-To-Be
section I asked the author of the letter if she would
be willing to share her letter, that was originally
intended for the "New Mom", here on the blog in the
hopes that it would have the chance to reach out and
touch even more new Moms.

Thank you, Trecia, for sharing your letter with
a lot more Moms-(and Dads)-To-Be.

"Dear New Mom,

First congratulations on your pregnancy I know you
are filled with hope and worry but I also hope that
you will be able to relax and enjoy this time until
your little one is born.

My name is Trecia I'm 48 and the Grandmother to Joel
David who is 21 mos old and has complete agenesis of
the corpus callosum c-acc. I'll try to keep our story
as short and succinct at possible.

My daughter Cassie was 21 weeks pregnant or thereabouts
when they noticed an increase in size of Joels lateral
ventricle on ultrasound, they monitored this for a few
weeks and noted a continued increase in the ventricle
size. I can't remember at what exact moment in the
pregnancy they determined that Joel probably had
hydrocephalus based on the ventricle size but at that
time they did an amniocentisis to see if there was any
genetic problem with the baby that would cause it.
The amnio results were clear of any other "problems."
Of course at this point in time we were filled with
worry and concern and the thoughts of all the things
possibly associated with a baby who has hydrocephalus,
seizures, shunting etc. Cassie had been referred to a
hi risk OB/GYN dr at this point and was seeing him every
couple of weeks. The Drs there told us many different
things, the hdro was mild the hydro was moderate, it
might not even be hydro boys often have big heads yada
yada yada. With each ultra sound we saw our baby boy
moving and sucking his thumb and we knew we loved him
no matter what.

At some point late in the pregnancy Cassie underwent
a fetal MRI and that was when we learned he had c-acc.
The Dr who conveyed this news acted as if it were a
death sentence and said to my daughter "Mom this is not
your fault". We sat in agony for 30 minutes waiting
for a neonate Dr to come and talk to us about this brain
abnormality. That Dr basically explained to us what the
corpus callosum was and said that Joel didn't have his.
He told us there was no way to determine to what extent
this would effect Joels life he said some people went
there whole lives never knowing they were missing their
cc and would do just fine. He also told us that there
were possiblilities for developmental delays and other
physical problems as well especially anything associated
with mid line as the cc is in the "middle" of the brain
often other organs that are in the "middle" of the body
are affected. We got the big "wait and see" talk
basically and that is what was the hardest, not knowing.

Joel was born vaginally without incident and spent only
a few hours in the special care nursery before going to
the regular newborn nursery and then home with Mommy,
Grandma and Grandpa two days later. They did an
ultrasound of Joels head while he was still in the
nursery and ruled out hydrocephalus, he never had it,
his ventricles were just enlarged as part of his acc.
Just a note Joel failed his newborn hearing screening
bilaterally, a lot of acc babies do. He later passed
his hearing tests.

Joel was a healthy infant for the most part he ate well
and slept well, sleeping through the night at five weeks.
He had a couple of ear infections and minor respiratory
infections though nothing serious. He always had a
snoring or gasping sound when he breathed though so when
he was a little older he had a sleep apnea test and a
swallow study which led to the removal of his adnoids at
about 15 mos old, when they did that they found Joel had
a mild sub mucous cleft palette (that's midline) like I
mentioned before, it was not serious enough to be of great
concern and they did no surgery to repair it.

Your baby will qualify for early intervention services
based soley on the diagnosis of hcc. Those types of
services include therapies such as physical, occupational/
developmental and speech. Some acc kids have low muscle
tone in different parts of their bodies and need therapy
to help strengthen those areas. You'll also meet a whole
array of Drs once your little one is born, he'll probably
be referred to a neurologist and should also be seen by a
pediatric opthomologist as often eye problems are present.
Also they may refer you to a genetecist. Joel started
physical therapy at around 6 months and he also gets
occupational therapy once a week and has just started
speech. Joel has been slightly developmentally delayed
since birth he hit his milestones a couple months later
than the "norm" but HE HIT HIS MILESTONES. That's
important to remember our acc kids get there sometimes it
just takes longer and more work on their part. There's a
book for children called ACC and Me and it describes the
lack of the super highway knows as the corpus collosum to
having to take back roads and side roads instead of that
super highway that is the CC. It just takes a little
longer to get there but the journey is much more
interesting and the final destination is the same.

I know you must be totally overwhelmed with all the
information being thrown at you but please don't
despair. We thank God every single day for the joy
that is Joel David. He is 21 mos old today and is the
love of our lives. He's a happy outgoing little boy
who is walking, dancing, climbing, (running his Grandma
ragged) etc etc. He recently graduated out of physical
therapy because he is doing so well and now we are
concentrating on speech, he knows some sign language
and is attempting to speak but isn't quite there yet,
we KNOW that he will though, when he's darn good and

I hope that hearing other peoples stories will help
you as you begin your journey with your little one.
I feel so blessed to be able to pass on to someone
else what the acc list did for me which was provide a
"family" of people who had been there done that and
who could offer advice and reassurance where often the
Drs cannot since acc is not a widely understood brain
abnormality. You will be your babies biggest and best

I've included a picture of Joel in this e-mail because
as shallow as it might sound when Cassie was pregnant
I was worried about what "acc babies" looked like and
someone on the list was kind enough to send me a picture
of their perfectly adorable little boy and it comforted

So I've about run out of steam here, I could tell you
cute Joel stories all day long but that would be way to
"Grandma like" and we wouldn't want that to happen."

Take Care,
Trecia Grandma to Joel David c-acc 21 mos old and the
love of our lives"

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 story?

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.


  1. What a wonderful email. Trecia thank you for sharing. I know it brought comfort to a Mom out there finding her way.

    Connors Mom, Shawn.

  2. Thank you for your beautiful and touching story. I think your point about enclosing the photo is a very important one. We have such fears of the unknown when facing a problem with our children. It is so important for new parents/expecting parents to see children with acc.
    Becki-mommy to Noah 9yrs C-ACC, ADHD, Sotos Syndrome


I am very interested in reading your comments and
look forward to hearing from you. Thank you.