Monday, January 24, 2011

ACC and Moms-To-Be #8 Story

I was recently contacted by the mom of a little
boy who has Agenesis of the Corpus Callosum who
expressed her desire to tell her own Mom-to-Be
Story about receiving the diagnosis of ACC when
she was pregnant.

This Mom shared something with her own

"I am very passionate about helping others and encouraging
others through those hard times."

Thank you very much, Brandy. I am so grateful to
you for your passion to help others, for your
willingness to reach out to people in need and for
allowing me to post your ACC Pregnancy Story.

Written by Brandy:

My pregnancy with this child (child #2 for me) was
never really normal. It started off rough as I had
started to bleed early on during my pregnancy. I
felt in my heart that I was losing my baby. However,
my baby was a fighter and wasn't going anywhere!
After about the 10 week mark, I was taken off bedrest
and was able to resume normal activities. At 20 weeks,
I went in for my ultrasound. Like many others, I had
no idea that they actually checked for so much during
those ultrasounds! He was given a good checkup other
than he was a little on the small side and they wanted
to do a repeat ultrasound at 28 weeks just to check
his growth. Thinking everything would be normal
(this was my second child and my first child had no
issues at all), my husband went on his trip out of town
for work, leaving me to go alone for the ultrasound.
This was the first and only ultrasound that he had
ever missed with either of my kids. Everything
seemed ok during my appointment. The ultrasound
tech never said anything was unusual or made any
faces. She printed off my pictures and told me
that he was growing on schedule. She then told me
that she was going to put me in a room so that the
doctor could talk to me. My stomach sank. I knew
that this was not normal! The ultrasound showed
that his brain ventricles were enlarged. I had never
heard of ventricles in the brain! I asked the doctor
what all that meant. He was very upbeat and honest
with me. He wanted me to go to a maternal-fetal
doctor to be followed. I got an appointment the next
day. On my way home after hearing the news, I was
pretty numb. I didn't know what any of this meant.
I didn't cry, which was VERY unusual for me. I even
went to the grocery store on the way home. It
wasn't until I got home and called my best friend
that I broke down. My husband flew home the next
morning so that he could go to the specialist with

The specialist basically told me that same thing.
Hydrocephalus and he would need a shunt. I did
lots of research on hydrocephalus. Some days I
was worried and other days I wasn't. At 36 weeks,
I was sent to the children's hospital for a fetal
MRI. A big pregnant woman in a little bitty
MRI tube = MISERY! Anyway, the results came
back that he had Agenesis of the Corpus Callosum
(ACC) and not hydrocephalus. His ventricles were
enlarged but stable and not changing. I was told
that his ventricles weren't necessarily enlarged,
they had just taken on a different shape since
there was no corpus callosum.

I opted to have a c-section to deliver him.
My first delivery was vaginal and did not go
well at all. I also wanted to schedule his
delivery so that we could have all necessary
doctors on stand-by just in case we needed them.
The delivery turned out to go smooth. He did have
to go to the Neonatal Intensive Care Unit (NICU)
for a night to monitor his breathing (not related
to the ACC) but was allowed to spend the rest of
our stay with me in my room. While in the NICU,
they did an ultrasound of his head and it confirmed
the ACC diagnosis. He also had an EEG which came
back normal. He was having a little difficulty
eating and that prolonged our hospital stay
by a day, but he caught on like a champ
(and he is now the best eating child I have
ever seen!). The neurologist visited him in
the NICU and then came to see me. He gave me
the best piece of advice regarding the ACC.
He told me to learn all I can about ACC and then
to forget it - to treat him like I would treat
any other child. My son is now 3.5 years old
and he has taught me so much in his short life.

He first started showing physical delays when
he was a few months old. He did not sit until
he was nearly 8 months, crawled at 11 months,
and walked at 13.5 months. He had been in
physical therapy through our Early Intervention
program since he was 6 months old. He was
discharged from physical therapy around 14 months
since he was really thriving in that area once
he started to walk. From 14 months until
2.5 years he was in a little occupational
therapy through the Early Intervention program,
however he really needed speech more than
anything. We fought and struggled with our
Early Intervention program because they just
could not provide what he really needed.

Finally at 2.5 years old, we got into a
private therapy clinic and had a wonderful
speech therapist who made leaps and bounds
with him. At 3 he graduated out of the
Early Intervention and we enrolled him in the
special needs preschool through our school
system. I was very hesitant to make that move.
In fact, I had pretty much decided that I was
not going to send him to school at the age
of 3. However, I have a wonderful friend who
had been down this road with her son who had
similiar issues. She pushed me to enroll him
in the special needs school. Boy am I glad
I did!

Until Logan was about 2.5, he was nonverbal.
He would say "mama" and "dada" on occassion,
but basically nonverbal. He made huge
improvements with his speech therapist, but
the special needs school has REALLY made him
bloom. Just thinking of his three angel
teachers makes me tear up. He now has a
vocabulary of about 150-200 words and is
doing two to three words sentences, though
many of his words aren't really clear
(but we can understand him!)

He has a sweet personality. He is pretty
quiet in a group and is very well behaved,
but once he is at home, he really opens up!
His behavior is pretty much perfect,
especially for a 3 year old. But we are
having one big issue and that is he screams
when his dad is at home. He loves his dad
and wants to always be with him and play with
him, but for some reason he just screams.
When he is just with me (or anyone else) he
does not do the screaming. As for Logan's
"screaming"... it is the most high pitch noise
you can imagine to come out of a three year old.
If it happens in a store (ie. Walmart) you can
definitely hear him on the completely opposite
end of the store. It literally makes me feel
like my head is rattling. I can't really say
what prompts the screaming. It seems to me that
he wants his dad to do everything with him
(or for him is more like it!) and wants his dad
to do it right that second. I was talking with
my mom today, who babysits Logan sometimes. She
said it is just like a Jekyll/Hyde transformation.
Logan is about as perfectly behaved as a 3 year
old can be with her (and everyone except his dad).
Then when his dad walks in the room, he just starts
with this high pitch, stop-in-your-tracks scream.
I'm beginning to think it is a mixture of language
barrier frustration, being spoiled by his dad,
and just being a stubborn and impatient three
year old. It has by far been the must frustrating
bump we have faced on this road.

I love my son to pieces. He has taught me so
many lessons about life. If I had the chance,
I would not change him for the world!

3-year-old Logan

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.

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