Monday, July 12, 2010

ACC and Moms-To-Be

There are a lot more Moms-To-Be out there who are being
told that their babies in utero have agenesis of the
corpus callosum. Those moms (and dads) have fears,
questions, concerns, worries and are seeking information,
help and hope.

I want to be able to create a place for people to read
about other mom's experiences who have been there and
who understand as well as a place where people can share
their own feelings, experiences, comments and stories.

I hope that this will be a place where you can find some
answers, support, information about agenesis of the corpus
callosum and real life experiences about ACC and Moms-to-Be.

The first story I found is so enlightening and so
incredibly well written that I asked the author and
Mommy if I could share it here for others to read.

Written by Cassie Beer:

"I can't get over how different this tiny person seems
everyday. It's like every morning he has a new face,
a new gesture, a new little sound. His spastic reflexes
are slowly becoming graceful, coordinated moves. His
arms use to flail over his head like swarming bumble
bees; now, his hands float exactly like little birds.
I know he would probably be so humiliated that I said
this, but when he moves in his sleep he looks like a
little ballerina.

I mentioned in my previous post that my pregnancy had
been pretty scary and nerve-wracking, and I'd like to
give a short explanation. Ok, not so short. It's
practically a novella. Bless your heart if you actually
read it.

When we went in to the doctor for our 20 week ultrasound,
Jason & I were busting at the seams with anticipation.
We couldn't wait to find out if it was a boy or girl
(we both were feeling boy-vibes), and I was so excited
for J to hear the heartbeat for the first time. During
the ultrasound, J & I kept making stink-eye faces at
each other because the technician was being so quiet
and so not excited. Without telling us the gender, she
turned to us with this concerned look and said she was
going to get the doctor.

Not exactly how you expect your 20 week ultrasound to go.

So, 20 minutes later, my doctor comes in to the room and
sits down across from us. She says that they can't tell
for sure, but it looks like the baby has Dandy Walkers
syndrome. Of course, we had no idea what that was, and
neither did she, really, but she said that it usually
means that the baby would have terrible motor skills
and probably severe mental disabilities. To make sure,
she wanted to send us across the street to the hospital
for a Level II ultrasound.

J & I drove over to the hospital. J was in shock, I was
balling my eyes out. We sat in the waiting room for an
hour before we went back for the Level II ultrasound. If
I hadn't been so scared out of my mind, it would be been
an awesome experience. Instead of that tiny, old school
tv screen that I had to practically break my neck to watch,
this ultrasound had a huge flat screen tv mounted on the
wall across from my bed so we could watch everything and
see each detail. This ultrasound nurse was actually humane,
and asked us if they had told us the gender at my doctor's
office. We realized that we had totally forgotten and that
they didn't tell us. When she said it was a boy, I had
never seen Jason smile so big. Also unlike the first
ultrasound, we actually got a whole chain of ultrasound
pictures to take home.

After another long wait, another doctor came in to see us.
Well, good news, she said, is that it's not Dandy Walkers.
Bad news, it's agenesis of the corpus callosum. Again, we
had no idea what that was. She explained that it seemed
like the part of the brain that connects the left and
right hemispheres was completely missing. What that
meant...she couldn't say. She said that some people are
missing the corpus callosum & are totally fine, others are
severely impaired. And, yet again, we were told that they
couldn't tell 100% from the ultrasound and that we should
schedule a fetal MRI.

So, Jason & I drove home with a handbag full of emotions.
We were so excited to find out it was a boy, and so excited
to know that every other part of his body looked perfect
(The Level II ultrasound nurse told us that his heart couldn't
be more beautiful). I went home, got in bed, and prayed and
cried until I fell asleep.

That Friday we went home for Christmas break, and we got
to meet our 8 month old nephew for the first time. He was
so beautiful, so perfect, so much fun, but it was so hard to
spend time with him. Whenever I sat down to play with him,
I ended up excusing myself back up to our room. I was so
overwhelmed with grief & fear: What if our baby can't sit
up on his own? What if he can't talk? What if he has to rely
on other people to take care of him his whole life?

Peace came in small bits and pieces, and joy came in baby
steps. Each night, we would read Psalm 139 & pray over the
tiny person growing in my belly. That Anne Lamott quote
became alive for me: Hope begins in the dark: we wait, we
watch, we work, we don't give up.

The Lord gave me so many small gifts over those two weeks.
For one, I ran into the dad of someone I went to high school
with. Without knowing anything, he told me how with his
middle son the doctors said that the baby would be severely
handicapped and physically deformed. The man said that he
called my grandpa because the doctors were saying they
should abort the baby, and my grandpa told him to act in
faith and not in fear. His son is now serving in the Peace
Corps and doing amazing things: no disabilities or
deformities. "Don't listen to doctors, no matter what
they say, " he had told me, "They don't know what the
hell they're talking about." I sat in my car afterwords
and cried and thanked the Lord for a little bit of light
in the darkness.

The second gift came during the Christmas Eve candlelight
service. I won't go in to detail, but there are reasons
that my brother and I should not be allowed to sit next to
each other in church. It was a very solemn service, but I
came down with the worst case of the giggles I have ever
had in my life. I mean, I don't know if I ever laughed that
hard. I literally had tears rolling down my face and soaking
my sweater. My mom was giving us a dirty look, and J was
looking at us in complete bemusement. I eventually had to
exit to the bathroom to compose myself. Maybe it was my
crazy hormones and roller coaster emotions or the fact that
my nerves were so frayed they were ready to snap, but it
was another small gift wrapped up in laughter.

The service ended with the lights being turned off and
everyone holding a small candle. For the first time all
week, I knew that J, the baby & I were not alone. We were
surrounded by the Lord's presence, surrounded by loving
family, surrounded by stories of hope, surrounded by Light.

After two weeks of being loved on at home, J & I went back
to Chicago. Our first Monday home, we went in for the fetal
MRI. I didn't even know they could do an MRI on a baby in
the womb, but apparently only a few places have the
technology to do so. When they told me that they might not
even be able to tell anything from the MRI because really,
they've only been doing them for a couple years and aren't
exactly sure how to read them, we almost decided not to go
through with it. For one, it didn't matter what the MRI
showed, we were having the baby. He could have 10 arms,
a dragon tail, scales instead of hair, or eye balls in
the back of his head, we were having the baby. If I hadn't
already been suited up in the hospital gown and so
emotionally psyched-up for it, I don't think we would
have done it. Looking back, J & I both wish we wouldn't
have. It didn't change anything.

The small gift that day was having my mom there with us.
When I'm in shock, I get really quiet and pretty much
completely shut down. We met with the neurosurgeon that
afternoon, and he told us that the MRI showed that the baby
had hydrocephalus (pretty much, he had way too much fluid
in his ventricles) and schizencephaly (parts of his brain
didn't form right, leaving little folds and clefts mainly
on the right side). Good news: the corpus callosum was
present and fully formed
. Bad news: there was still no
telling if he would be perfectly fine, have slight
disabilities, or be completely impaired. J & I just sat
there staring at him, while my mom had the presence of
mind to ask questions and write down everything he said."

There is more...

You can read the rest of Cassie's very informative and
insightful story on Cassie's Blog.

Thank you very much, Cassie, for allowing me to share
your story here on the ACC Blog.

There are many different stories and outcomes of
ACC and Moms-To-Be. I welcome every story.

In the next two weeks I will be posting a few more
ACC and Moms-To-Be stories here.

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 bringing 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


  1. Sandie, thank you and thank you Cassie for sharing your story of you precious baby boy, in so many ways it mirrors my own daughter Cassies' and her precious son Joel Davids' story, I can only hope that when "new moms" come searching for answers that they find these stories of hope and faith and unconditional love and know that Dr's Gloom and Doom aren't always accurate and even if they are our ACC kids are perfect just as they are.

  2. I went through a similar situation. My daughter is now 7.

  3. Merci, Cassie.

    Isn't Dandy-Walker a form of epilepsy?

    I know a Scottish-Aussie girl who is about 10 and she goes to school. Her seizures are (mostly, hopefully) controlled.


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