Wednesday, April 27, 2011

ACC & Moms-To-Be Story #10

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.

I received an e-mail from Shea, the Mom of Levi,
who expressed a desire to share her ACC Pregnancy
Story here for others to read.

Thank you very much, Shea. 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 pregnancy experience.

Written by Shea:

Levi's Story

We were so excited to be expecting our 3rd baby in the
summer of 2010. Originally due September 6th we were
going to keep it a "surprise" and not find out the sex
of the baby. At my 30 weeks ultrasound we expected it
to be like all the others, easy and routine. My
husband was with me and after just a minute of looking
the tech told us the baby was breech. Having had 2
babies prior I knew that this sonogram shouldn't take
too long but after several minutes I began to get a
little nervous. I knew from the baby being breech that
she was taking a lot of time studying the baby's head,
or at least where I assumed the head was since she had
pointed it out to us on the screen. After 10 minutes
I even looked at my husband and gave him a "look".
I just knew something was wrong. A few more minutes
and I asked, "Is there something wrong?" She said she
wanted to take her time because she had never seen me
before and apologized for taking so long. A few minutes
later I started crying and without saying anything she
patted my hand and told me to try not and worry but that
she did have some concerns and wanted to go and get the
doctor. MY WORLD STOPPED! We still didn't understand
and because she wouldn't tell us anything we were left for
about 20 minutes to wonder what was wrong with our baby.

After 20 minutes of waiting my doctor came in and said
that they were concerned about the size of the baby's
head. At 30 weeks the head was measuring a few weeks
ahead. They mentioned something about maybe too much
fluid in the 1st and 2nd ventricles. She tried to
reassure me and said that she was going to refer me to
a maternal fetal specialist. This was a Thursday; our
original appointment was made for 8 days later on a Friday.
I couldn't imagine waiting that long so my husband called
in some favors and we were worked in 3 days later that
Monday morning. After a high definitition ultrasound the
doctor explained that there was in fact too much fluid in
the 1st and 2nd ventricles and also a significant amount
of fluid in the 3rd ventricle as well. What I am reminded
of even today from our conversation with him was when he
said, "I am very worried about this baby and I think
you should be as well." He then encouraged us to have
an Amniocentesis test that day and scheduled us an
appointment with our local University Hospital for
a Fetal MRI for 2 weeks later.

In the course of the 2 weeks leading up to our Fetal MRI
we received the results from the Amnio and were so
grateful to learn that all chromosomes were normal
and we were overjoyed to learn from the test that
our baby was a BOY!!! They encouraged us to move
forward with Microarray Analysis testing which is
more extensive but again all chromosomes were normal!
With each passing day leading up to our Fetal MRI I grew
more and more anxious. I was consumed with worry
and anxiety.

Fast forward and at 32 weeks, from the Fetal MRI, we
were given the official diagnosis of Hydrocephalus
and Complete Agenesis of the Corpus Callosum. We
were left to wonder, “What is ACC?” The maternal
fetal specialists and staff at the hospital were
lacking in information and basically gave us some
copied pages from a text book with some harrowing
facts about ACC, nothing positive to say the least.
Words that stood out from our conversation that day
were, "facial may never walk,
talk or eat and will likely have rage issues."
I was numb to these words. I couldn't believe that
only a few weeks before we were just a "normal"
family, excited to be expanding our family without
a care in the world.

Somehow we muddled through the next 5 weeks. I
continued to see my regular OB for twice weekly
check-up’s and BPP’s (Biophysical Profiles) to make
sure the baby wasn’t in distress. They never would
tell me if the baby's head was growing but would
occasionally hint that it was in fact larger than it
should be so I was left to assume that his Hydrocephalus
was severe. And because I needed to deliver at another
hospital I was unsure of when or how he would be born,
who would be my doctor. We knew we needed to deliver at
the University Hospital because they have the only
in-state Pediatric Neurosurgeon and we knew it was
likely the baby would need a shunt placed.

At 37 weeks it was decided to do another amniocentesis
at the University to check for lung development and at
37 weeks and 1 day on Tuesday, August 17, 2010 Levi
joined our family. They wisked him away and it wasn’t
until several hours later that they allowed me to see him.
When I was able to see him and touch him….I was in awe
and my heart was filled with joy at the wonder of him.
He looked just like our other 2 children, absolutely
beautiful. For so many weeks we had prayed so diligently
for him. Surrounded by family, friends and our priests
that day I knew that Levi was truly a gift from God and
today he continues to bless our family.

Levi had a VP Shunt placed a week after his birth and
was released from the NICU one week later. Levi was
officially diagnosed with an Interhemispheric Cyst in
March. The cyst was suspected in utero. Today, at
8 months old, he is doing remarkably well! In comparison
to our other 2 children he is meeting milestones and
developing just as he should.

Levi learning to push up on his tummy well at 5 months old

We qualify for physical therapy 1 time a week. He has
been rolling over since 4 months old and has been sitting
mostly unsupported since 7 months of age. He is like a
little inch worm, squirming on the floor. Not ready for
crawling but by all accounts doing remarkably well!

Levi sitting at 7 months old during a trip to the beach with family

If by sharing my story brings comfort and hope to even
one family then it's been worth my time in sharing it.
I worry so much about Levi. There are so many “what if’s”
that fill my head each day. That being said, I worry
about my other 2 children as well. It’s my job as a mom
to worry and want the best for all 3 of them. But, God
is so good and His grace is sufficient. I am an all
together better person today because of all three of my
children. Our family is stronger, we are better and more
faithful than before.

Levi at 8 months old on Easter Sunday

I say about Levi that he is EVERTHING God intended him
to be and I know he will do great things. He is perfect
and I wouldn't change a thing.

Shea (Levi's Mommy)
E-mail Contact:

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. He is beautiful & doing so well! Thank you, Shea, for sharing Levi with all of us!

    Love, Bree

  2. This comment has been removed by the author.

  3. Hi Shea,

    I just joined last night and thank you for another ray of hope. Our beautiful son Kye was born 2 days before Levi and our pregnancy stories are so similar it brought me to tears. Levi is beautiful! Thank you for sharing!


  4. Shea!! Levi is beautiful!! How is he doing he still meeting his milestones? Thx for reading my story about my daughter Kacyee. She is a little angel and we are sooooo happy!!! We feel we can handle whatever else lies ahead!!! :)


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