Monday, January 17, 2011

ACC and Moms-To-Be #7 Story

Soon after posting the previous ACC Pregnancy Story,
I was contacted by another mom, Andrea, who has a
son who was born with Agenesis of the Corpus Callosum
and she expressed an interest in sharing her own story.

Several months ago I came across Andrea's blog about
her baby boy and I have been reading her blog posts
so it was a very nice surprise to get an e-mail from
Andrea, for the first time, and read about her desire
and willingness to tell a very private part of her
life in the hopes that it may help others and to let
them know "that they are not alone."
(in her own words)

It is truly a privilege to be able to post Andrea's
Pregnancy Story here for you to read.

Thank you very much, Andrea, for reaching out to
others from your heart.

Written by Andrea:

This pregnancy started off a little differently
from the very beginning. When I had discussed
with my OB-GYN that my husband and I were
thinking about trying to have baby #3, he went
ahead and sent me for some testing with a
high-risk maternal-fetal specialist due to the
fact that I had miscarried two times previously.
He didn’t want me to have to go through that a
third time before we did some testing to find
the cause. The initial testing showed that I
have a blood clotting disorder known as MTHFR,
which makes me prone to blood clots. So I was
put on a baby aspirin every day as well as 5
folic acid tablets per day. I also had to be
followed closely by the maternal-fetal specialist
throughout the pregnancy. This was actually a
blessing in disguise, because it’s this high
tech equipment and the highly-qualified
sonographer, who discovered Anderson’s ACC
before he was born.

We were so excited to find out whether or not
this 3rd child would be a boy. We already had
2 girls and while we would have loved another
girl just as much, my husband and I were hoping
for a boy. To be honest, I really thought that
was the main purpose of the 20 week ultrasound.
In fact, even though this was my 3rd child
(5th pregnancy), I didn’t realize how detailed
these ultrasounds are. I had no idea how many
things they check and measure. I mean, they
check for 3 bones in the baby’s pinkie finger!
Did you know that?

Throughout the ultrasound, we kept hearing the
sonographer ooh and ahh over our precious baby.
She kept saying how beautiful everything looked
and how wonderful the images were that she was
getting. She did reveal that the baby was a boy,
and we were overjoyed! It was about 10 minutes
later that her demeanor and voice both completely
changed all at once. She became quiet, concerned,
and intensely focused on something that she did
(or didn’t) see. She left the room, came back in
with another sonographer who then took her turn
looking at the screen, pointing to things on the
screen, and giving “looks” to the other lady.
Then they both left the room. At this point, my
husband and I both realized that something was
wrong, but we didn’t know what. All we knew,
was that they kept looking in the baby’s head at
his brain. The third time the lady came back
into the room, she told us that she was going
to put us in a room so the doctor could talk to
us and discuss the ultrasound results. I
stopped her mid-sentence and asked, “What is
going on? What is it that you are looking for
and can’t find? Or is there something you do
see that shouldn’t be there? We are completely
in the dark. We are scared. We need to know
what is happening.”

At this point, I hear the words “corpus callosum”
for the first time. I had no idea what it was,
or what it meant for my baby to not have it.
This is where my story really begins to differ
from that of others’. We were never told, nor
was it ever implied that we terminate the
pregnancy. In fact, at this first visit, quite
the opposite happened. When the doctor came
in to speak to us, she explained what the
corpus callosum is and what its job is in the
brain. She told us that the only effects of
not having one could be coordination problems
and possible seizures. I specifically asked
her what effects it would have cognitively on
the baby and she replied, “None at all.”

We actually left the visit feeling okay- not great,
but we still felt all would be fine. The doctor
told us that everything would be fine and more
than likely he would have no problems. It wasn’t
until I decided to do my own research that I
realized that this doctor had given me false
information. I began searching and searching
for anything I could find relating to ACC, and I
kept reading stories of people with ACC and it
didn’t take me long to realize 2 things: 1.
While all of the stories might share some
commonalities, each person with ACC is very
different. It is not a cookie-cutter diagnosis.
and 2. The doctor had not been completely honest
with my husband and me about the prognosis of
our baby.

I was outraged. I knew I could not continue
seeing a doctor who would not be up-front and
honest with me. I called my OB-GYN and told
them I wanted a 2nd opinion. They immediately
scheduled me an appointment with a different
group of doctors. In the meantime, we were
left to wait, to wonder, to worry, and to have
more questions than we had answers.

We received the letter in the mail to confirm
our appointment, along with the paperwork to fill
out for our first visit, and I noticed that I had
been made 2 appointments- 1 with the maternal fetal
specialist and the other with a geneticist for
“Genetic Counseling”. Keep in mind that at this
point my husband and I have not even accepted that
something is wrong with our baby. We are still
dreaming that when we go for the 2nd opinion the
ultrasound will reveal that this had all been a
mistake and the baby is doing well. Oh how we
prayed for the corpus callosum to be seen!

As you know from me typing our story, it wasn’t
there. However this doctor was much more open
with us. She wasn’t doom and gloom, but she would
present us with what she knew, and didn’t mind to
tell us that some things we would just have to
wait and see. We continued with this doctor the
remainder of the pregnancy.

As the pregnancy progressed, there was mention of
a small cyst, and also the fluid in the baby’s
ventricles was being monitored closely. However,
at each visit, the fluid stayed within the
“high-normal” range. Until the 34 week visit.
At this visit, the amount of fluid had increased
significantly- to the point that they were
concerned that the baby’s brain may be under
pressure. So it was decided to deliver the baby
via C-section at 37 weeks.

I was scared out of my mind the day of the
delivery. We still really didn’t know what to
expect. Would the baby have facial deformities?
Would he breathe okay? What problems would he
have when he was born? What about the fluid?
Will he need surgery for a shunt? There were
so many questions that couldn’t be answered
until he was out of my body and welcomed into
this world.

Anderson Knox Spears was delivered at 8:47 on
Tuesday, June 1, 2010, at a hefty 8 pounds and
2 ounces. Shortly after he was born, it was
determined that he was struggling to breathe
on his own and he was whisked away to the NICU
after I got one quick peek at him. I remember
that he was absolutely beautiful. I remember
the delivery being very peaceful. I remember
not being worried that they were taking him to
the NICU. I felt at peace with everything
now that he was here.

Later that night, I was wheeled to the NICU to
get to see my baby. I was not prepared for what
I saw. He seemed so fragile laying there with
all of the tubes and lines and machines. He
actually only ended up on a CPAP machine to help
his breathing, and he had a feeding tube in his
nose. He had an IV in his arm, and monitors on
his chest. He was in good condition, but to see
your newborn lying there helpless after delivering
2 healthy babies and getting to hold and love on
them immediately, there are really no words.

Anderson’s breathing condition had nothing to do
with his ACC. It had more to do with the fact
that he was born at 37 weeks and his lungs needed
a little more time.

While he was in the NICU, the testing began.
Chromosome testing, blood testing, MRI’s, xrays,
hearing tests, vision test, etc. Lots and lots of

It was determined that Anderson had hydrocephalus,
complete agenesis of the corpus callosum, and an
interhemispheric cyst. However, his chromosome
testing showed that he had no chromosomal

At exactly 1 week old, Anderson underwent surgery
to have his VP shunt placed. His shunt is actually
placed in the cyst- rather than in the ventricles
in his brain. Come to find out, the fluid that
they had been watching was not in a ventricle- it
was actually in the cyst. It appeared at first
that the cyst had actually grown in place of the
right hemisphere of his brain. However, as the
shunt continues to work properly and the cyst
gets smaller, more and more brain tissue is
appearing. Apparently it is there, it is merely
hidden by the large cyst. He tolerated the shunt
surgery so well, that we actually got to come
home the day after the surgery.

Still not knowing what to expect, our family
prayed, we loved, we rocked, and we treated him
like a normal baby. His 2 sisters absolutely
adore him, and they have been the best form of
interaction and stimulation that he could get.
Anderson began to amaze all of us as he grew.

He is now 7 months old and continues to amaze
everyone who knows him. In fact, he is even
amazing the doctors. When they see his MRI
results and then they look at him- the 2 don’t
fit together. He is doing things that right
after he was born we were told he would never do.
In fact, when he was 6 days old, a doctor told
us he would be severely delayed in all areas
and we should go ahead and file to put him on
disability. We told him we were not giving up
on him. We were going to give Anderson every
opportunity to be successful…and what a wonderful
decision that has been!

At his 6 month developmental check up, Anderson
was on an 8 month cognitive level, and on a 4 month
verbal and motor skills level. He is sitting up
unassisted, but he isn’t rolling very well. He
can do it, but not without lots of encouragement.
He is getting a head-shaping helmet this month-
because he would not lie on the right side of his
head due to his shunt so his head is misshapen.
He is talking (babbling) more and more each day.
We couldn’t be more pleased with how he is doing.
He is a true blessing to our family. He is
defeating the odds that are against him. We know
he may hit some obstacles, but we take each day at
a time and focus on what he CAN do, rather than
worry about what he WON’T be able to do.

If you are expecting and have received this
diagnosis, it is not the end. It is the beginning
of a very special journey. Anderson is a wonderful,
happy child who brings joy to everyone around him.
We can’t imagine our lives without him. The truth
is that the doctors really don’t know. Every
child/person is different. The doctors do not
have all the answers. We have found that our God
is much bigger and more powerful than the doctors.
He is allowing Anderson to do things that are not
medically possible. We look forward to watching
him grow, develop, and continue to amaze all of us!

If you have any questions or would like to get in
touch with me, feel free to email me at:

Also, if you would like to read more about our
journey with Anderson, visit our blog at

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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