Monday, February 7, 2011

ACC and Moms-To-Be #9 Story

I am so 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.

Several weeks ago I received an e-mail from
Amanda who expressed a desire to share
her ACC Pregnancy Story here on the blog
for others to read.

Thank you very much, Amanda. It is a
privilege to post your story and I thank
you from my heart for your willingness to
help other people through your own
personal experience.

Written by Amanda:

My name is Amanda and I am the lucky mother of three

On August 28th of 2009 I found out I was pregnant
which also was a week after my brother-in-law was
killed in a car accident.

My pregnancy was normal for the most part but it
took a month or so before I was able to see an
Obstetrician because Medicaid was dragging their
feet and no doctor would set me an appointment
without insurance. I was very angry.

When I was finally able to see a doctor because of
insurance (and where I live) I only had two choices
for doctors. So I picked the closest doctor.

When I finally got a doctor, I let my doctor know
I was hurting and having pain on and off with this
pregnancy. He checked me out and said I was fine.
With my second pregnancy I hurt and couldn't walk
far and had to take meds to control contractions.
At the end of my second pregnancy my son was born
five weeks early but was healthy. So I made sure
my doctor knew about my problems with my second
pregnancy when I saw him at my first appointment
for this pregnancy. But he didn't seem concerned
or seem to care about the pain I was having.

I remember hating to go to doctors because it would
take three hours to get seen and then ten minutes
to be seen. Because of my insurance you are only
allowed 2 ultrasounds.

About a month or two before Landon was born is when I
had an ultrasound done (my first and only ultrasound).
After the ultrasound, they said everything looked
good. They said due to his head size I was further
along than they thought and they changed my due date
from May 1st to April 26. My doctor said take it
easy but don't worry everything was good.

But in reality I now know he just had complete
agenesis of the corpus callosum (c-acc) and
plagiocephaly and many other things that were
not yet discovered.

Then soon after my ultrasound I went to a routine
appointment on March 15 (six weeks before my original
due date). I told my doctor everything again about
the pain and problems with my second pregnancy and
the pain I was having with this pregnancy and I also
told him that while doing kick counts the baby hadn't
moved much. So he said go to the hospital, let them
hook you up and check everything.

As soon as they put me on the monitors to watch me
I started having bad contractions.

I was in labor for 24 hours. On March 16, 2010 our
beautiful son, Landon, was born weighing 5 lbs.
4.9 oz and 18 1/2 inches long.

The cord was wrapped around his neck twice and he was
not breathing right so they took him to the Special
Care Nursery which is the same thing as a Neonatal
Intensive Care Unit (NICU). Landon was considered
to be preemie when he was born.

I didn't get to hold my son for a week and a half.
He was on machines helping him breathe and we couldn't
even touch him. They were afraid too much stimulation
could make his lungs collapse.

He was on the breathing machines for almost two weeks
and on feeding IV's for about a week.

He didn't seem to see or notice anything when he was
messed with or touched so they weren't sure about his
eyes. They always said oh all preemies have to learn to
eat, breathe right and keep his own body temp up in his
own time.

Once he could breathe right and keep his body
temperature up on his own he was moved out of the
warming bed (closed incubator) into an open bed for
almost another week. Then we were finally able to
bring him home.

He was in the Special Care Nursery a month before we
could take him home. No one could tell us why he
wasn't gaining weight and not eating right or

Once we brought him home he still couldn't eat without
it all coming back up right after. He started losing
too much weight so his Pediatrician and stomach doctor
put him in the hospital. He was put on Zantac when he
was born then changed to Prilozec then to Reglan but
changed back to Zantac because he had a reaction to
Reglan. Also he was on Neocate and Polycose--both are
supposed to make him gain weight but still didn't.

When he was four months old he was admitted to the
hospital because of inability to eat without vomiting.

While in the hospital they did ultrasounds of stomach
and head, a lot of blood work an MRI and CT scan. Finally
they had a diagnosis. They informed us that Landon had
complete Agenesis of the Corpus Callosum (c-acc),
Deformational Plagiocephaly, Septo Optic Dysplasia,
Optic Nerve Hypoplasia, Gerd and Gastroparesis and now
they say he has a growth hormone deficiency.

The doctors said they had never really dealt with
anything like this and all they really knew was seizures
were a big possibility as was delays, he may need a
feeding tube, may never walk or talk so I was horrified.
I could do nothing but cry and blame myself and
everything else.

He doesn't see very well, he doesn't move much, he
is over 10 months and he just now learned to hold his
head up. He still has problems with eating baby food.
At 10 months he is only 15 lbs.

Nobody around here seems to be able to tell me
anything but wait and see. They say he may never walk
or talk and are not sure where he will be mentally.

But no matter what happens Landon is a God send. He
changed everything. He has made me a better stronger
person and I wouldn't trade it.

I just wish I could take his place so he wouldn't
have to go through it.


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.


  1. What a cute guy! I love that last picture especially, so sweet! Thank you for sharing your story with us, Amanda!

    Sandie, could you send her my blog info, please?

    Loves to you both! ~Bree~

  2. Hi Bree, I just sent Amanda an e-mail letting her know that you left a comment for her and I gave her the link to your blog about your little cutie, Bugg.

    Love, Sandie

  3. A great story! He is too cute! I am a mother of a 3 year old little boy with ACC, and spastic diplegic cp, as well as tibial torsion. He has made many accomplishments and I was once told the same thing, that he would never walk and talk. He is a story of inspiration! I am interested in sharing our journey. My email address is, in case you have spam blockers. I will email you soon.


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