Friday, July 30, 2010

ACC and Moms-To-Be #4 Story

I received this ACC and Moms-To-Be story from
Carrie and it is truly a privilege to be able to
share it here with you to read.

Thank you very much Carrie for reaching out to
other Moms and Daddies too as you openly share your
very personal ACC story.

ACC in Pregnancy Story

Our older daughter was born with hypoplasia of the corpus callosum. Her name is derived from a
Hebrew name that means “spared by Jehovah.”
This is an account of our experience.

Prenatal Issues

As a 22-year-old, I became pregnant in late
summer of 2002. My husband and I had been married
for just over a year and we were both employed
full-time and were college graduates. We both
manage chronic health conditions—I have asthma.
He has a chronic health condition, and we consider
ourselves to be intelligent, empowered patients
who do their research and demand to have a say in
our care. My OB/GYN was a doctor who had delivered
me as well! I had no risk factors for complications
and was exceedingly careful both before and during
my pregnancy, taking the recommended prenatal
vitamins, eating well, and avoiding hazardous
environments, lunch meat, microwaves, overly-hot
baths, etc.

Our sonogram at 13 weeks looked great. My OB sent
us for a second sonogram at 24 weeks. Although we
did not want to know the gender, he found it to be
a good time to let Mom and Dad get another peek at
the baby and to let him have another set of measurements.
We thought the ultrasound went great and the tech said
nothing amiss that we noticed. We headed upstairs for
my regular appointment.

My OB was greatly concerned by the measurements of
the ventricles in our baby’s brain, which was a
surprise to us. Apparently the tech was not allowed
to disclose any issues. He referred us to a geneticist,
and we had to wait 2 weeks for the appointment because
he was out of the country. My OB’s best guess, having
not been present at the scan, was hydrocephaly.

The geneticist and his residents spent about three
hours doing sonograms. I also had an amnio done to
rule out genetic complications and so that we could
line up a special-needs pediatrician if needed. We
told them that we did not want to know the gender.

He told us that he believed the baby had Agenesis
of the Corpus Callosum (ACC), but that it would not
be anything debilitating, just something about as
difficult to manage as ADHD. The amnio came back
normal, but they did disclose the gender when they
mailed us the results.

We had a repeat sonogram with the geneticist at 30
weeks and he still felt that ACC was the issue.

Preparations for Birth

Given our baby’s brain complications, we met with
several pediatricians and asked each about three
pages of questions. Some blew off the concern. Others
asked me if I had been taking illegal drugs during
the pregnancy. We finally settled on a pediatrician,
who seemed to have a middle-of-the-road approach
while being personable and cautious. We copied her
on all notes from the geneticist and remained in

We also met with one of the neonatologists at the
hospital. We were impressed with him, and although
we were not able to go in the NICU, we at least felt
fairly comfortable with the situation if it were an

We also took the hospital’s childbirth class. A huge
emphasis was placed on natural, induction- and
epidural-free childbirth. Because I was already
planning on this, it was in line with my wishes and
I learned a lot from the class, as did my husband.

I also attended a breastfeeding class. The lactation
consultant is a terrific cheerleader for moms who feel
insecure trying such a huge new thing. I can say that
she is a huge part of why I eventually succeeded in
breastfeeding my daughter—the accomplishment of which
I am most proud. I did ask her about issues concerning
nursing a newborn with ACC. She thought there might be
some loss of muscle tone and promised to follow up with
me when she was born and do everything she could.

My husband and I both attended her first aid class as
well. We learned a lot and had a good time doing so.
Learning how to help a choking toddler came in handy
for me more than once with my daughter’s oversensitive
gag reflex later on.

Birth Complications

At 34w4d, I left work for my 34-week appointment.
My blood pressure was sky-high, I was spilling
4+ protein, I had 4+-degree swelling, my reflexes
were very clonic, and I was gaining 10-12 pounds
a week in water weight. It seemed that I had
developed preeclampsia. My OB sent me to BSA for
a non-stress test and ordered immediate bedrest
“if they even let you leave the hospital.” They

The nurses freaked out a bit. Upon seeing my
blood pressure of 200/100, they put me in a bed
in a dark room with padded bedrails and forbade
me to get up to go to the bathroom or to watch TV
or to eat. After reiterating that I had driven
myself there and walked in myself, I convinced
them to let me up to go to the restroom and to
have a Subway sandwich for supper. That was my
last meal for about 4 days. They brought nursing
students in regularly to learn what clonic reflexes
were like. I was being pumped full of magnesium

My OB came by and asked if I still preferred to
have a natural delivery, or if I wanted to do a
c-section. He was honest in saying that the
c-section is easier for him, but that the natural
birth would do the best for the baby’s lungs.
Because I was already 34 weeks along, it was too
late to do the steroid shots. I still wanted a
natural unmedicated birth. He was going to contact
the pediatrician to ensure that she was okay with

The OB came in in the morning and began the induction
at 8 or 9AM. My baby had no intention of being evicted
and after reaching the maximum level of Pitocin, they
had to start turning it off and then jacking it back
up again to make contractions happen. He broke my water
upon returning from a funeral. I had one or two mild
contractions that I could actually feel and then they
insisted on internal monitoring and an epidural because
they were afraid that pain would drive my blood pressure
higher. The first epidural did not work. The second did,

At about 8PM, I hit transition and had a wave of nausea
(despite having no food/drink for 24 hours). When I
rolled over out of reflex, the baby’s heart rate crashed
and pandemonium broke loose. I was immediately prepped
for a c-section. The nurses wheeled me down the hall
to the operating room. I was wheeled in yelling “I’M
NOT NUMB! I’M NOT NUMB!” In an effort to get her out,
I was shot full of local anesthetic in addition to a
bolus from the epidural. I could still feel a lot of
pressure and tugging and it was not a good experience.
It took three people to get her out because she was
tiny and was so low. (In hindsight, it’s also her
personality.) I never saw her or heard her. The
tugging stopped. The room was silent. I finally said,
“Is she out?” My husband said, “Yes.” I said, “Is she
breathing?” He said, “I don’t know.” Then she was
gone—whisked out of the room to the NICU.

At that point, I was hurting. The spotty anesthesia
as I was being put back together, the emotional shock
of not knowing if my baby was dead or alive, the lack
of sleep, the lack of food/drink, and the accumulation
of magnesium sulfate made me want to do nothing but
sleep and try to block it all out.

At some point later, I was back in a hospital room,
but I thought it was a different one. My eyes would
not focus. I had a serious sense of vertigo and had
difficulty staying awake. I woke up long enough to
ask if she was alive and my husband told me yes.

My Recovery

The pain button on the epidural pump was my best
friend for the next few days. Once it was removed,
the Pain Management team gave me a pill that I’m
pretty sure was hydrocodone. Again, despite my
asking about being able to be alert and ambulatory,
my eyes would cross, I would fall asleep in
mid-sentence, and I could not focus—much less
attempt to walk.


My husband went to see our daughter in the NICU after
my surgery was over. She was in a frog’s-nest on
an open bed on CPAP and was stabilized. He was
able to record video of her briefly that he played
for me when I briefly awoke. That is how I first
saw my child—on a 3-inch camcorder screen.

The grandparents were allowed to go in to see her
that night as well. My mom went again first thing
the next morning and stayed there for about an hour.
She was encouraged to touch her firmly and sing to

My wonderful nurse, took me to see her the next day.
I rode in a wheelchair and still could not make my
eyes focus. I recall noticing that she had my toes
and fingers and a lot of hair. I could not scrub in
and therefore did not touch her.

The next day, my husband, wheeled me down to see her
again. I was still so messed up from the medicines
that I was reasonably sure that they took me to a
different baby, but decided not to say anything.
I still could not make my eyes focus and had a hard
time paying attention.

The next day, I got away from pain medication and
switched to Advil. I wheeled myself to the NICU and
I held her for the first time.

A lactation nurse, came to see me in my room and
helped me get started pumping. I did that every
3 hours for the next 6 weeks.

I gave her her first 5cc via bottle, which killed
me because I was so committed to nursing.

The first time she nursed was an experience. The
lactation nurse on duty came to the NICU and helped
me get her latched on and things went amazingly well.
When she got tired, we stopped.

Due to her prenatal diagnosis of ACC, they did an
ultrasound of her head and found that to their
surprise, she did have a corpus callosum after all.
This left them puzzled about the reason for the
large ventricles.

They took her for an MRI one morning. I would
have liked for one of us to go with her, but we were
not given notice and found out after it was already
over. Along with our family, we were all awaiting
news of the MRI results. Family called daily looking
for an update.

The neonatologist came into our hospital room with
her nurse practitioner. The neonatologist waltzed
up to my hospital bed, where I was sitting and my
husband was in the chair. She immediately said,
“The news is not good.” I will never forget that
phrasing. She proceeded to tell us that our baby
had lissencephaly and would never walk, talk,
sit up, or even roll over. She said that our daughter
would suffer debilitating seizures and that an
EEG was already scheduled and would be read by
doctors in Dallas to see how severe the seizures
were already. We questioned the fact that she was
making periodic eye contact and even somewhat
smiling at times (we have photos). We were told
that that was due to overactive muscles. We
questioned the fact that we had not seen any
seizure activity and we were told that it was a
matter of time. She told us that her nurse
practitioner would print some information off
the Internet for us. My husband and I cried and
prayed together and decided to move forward
regardless and do the best we could. I had to
keep up on pumping and we tried to spend as
much time as we were allowed to with her. The
nurse practitioner returned later and gave my
husband a packet of information so that we
could read up on the condition.

Later, he looked at the packet of information.
It was printed off of the Internet. The first
thing on the page said, “If your child has just
been diagnosed with lissencephaly, this is NOT
for you.” It is for parents who have had time
to cope and understand the diagnosis who now
want more information. He read the information
and told me he did not want me looking at it in
my current state. He took it home.

With the news of lissencephaly, the pediatrician
who we had YET to see dropped us like a hot potato,
but did not tell us. We tried to make contact and
couldn’t get a call back. We eventually discovered
that a special-needs doctor was now our pediatrician
and was in fact taking over the neonatology side for
the most part as well. We were puzzled, as we had
never met him, or had any idea why he was now our
doctor. He and his nurse practitioner came to my
room to talk to us. They told us that they didn’t
care what the testing says—the important thing is
to focus on the baby and what she can do and what
issues she’s having. He also told us that the
original pediatrician had transferred us over to
him because he was a special-needs pediatrician.
We decided that we were comfortable with his
approach and that we liked his NP as well. One of
them continued to check in with us once or twice
a day.

Again, we were not told when the EEG was taking
place. We found out after the fact. The results
were normal—no seizure activity.

We had been told that she would be in the NICU
until about her due date (May 25, 2003). However,
on the sixth day, she began regaining weight and
was “nippling” okay (though her oxygen sats did
drop a bit while eating).

Our new pediatrician wanted us out of the hospital,
where she would no longer have to be a baby in
a box and where she could be cared for by her
parents. We agreed.

On the seventh day, our daughter roomed in with me in my
“hotel” room. I had serious trouble getting her to
latch on to nurse and we ended up using bottles
quite a bit.

I am immensely thankful for the lactation staff,
who not only helped me while in the hospital, but
also fielded tons of phone calls from me and allowed
me to come in for weight checks to see how much she
was eating. However, I do wish that nipple shields
had been discussed more thoroughly with me. I did
not realize the issues that they would cause with
supply, and I had no idea how to get her to quit
needing a shield to be able to nurse.

I exclusively pumped for the first 6 weeks because
latching was just not working and I could not handle
an additional sense of failure; I had to take Reglan
because my supply totally disappeared the day after
we came home from the hospital. At 6 weeks, she latched
on and refused to take another bottle after that. Ever.
She was 4 ½ months old before I was able to get her
latching and nursing without the shield, which cut
our nursing sessions down from a solid hour each time
to about 20 minutes. She was 8 months old before she
was really latching correctly, which meant that I
endured multiple rounds of blisters, cracks, thrush,
and mastitis. At 8 months, everything finally started
coming together, both of us knew what we were doing,
and it finally worked like things should have to begin

At 5 months, we repeated her MRI. There was
“no sign of lissencephaly.” We will never know if
the first MRI was misread or what exactly happened;
we choose to view it as a miracle and give the credit
to God. The report also described “diffuse thinning”
of her corpus callosum and still-enlarged ventricles.
She has never had a seizure.

She began rolling over consistently at 5 ½ and
7 months. She sat up at 7 ½ months. She began crawling
backwards at 10 ½ months and forward right after her
birthday. She got her first tooth at 16 months. She
walked at 18 months. She knew about 40 signs by age 2
and began stringing spoken words together at about
age 3. She potty-trained at 4 ½. She has hit every
milestone late, but she has hit them.

She is now 6 ½ years old. We began occupational
therapy in May 2009 for ADHD-like sensory-seeking
issues, fine motor delays, and visual processing
delays. We recently repeated her MRI. She has
hypoplasia of the corpus callosum (“extremely thin”)
and her ventricles are still enlarged. In hindsight,
many of the issues that we had during her infancy
and preschool years are related to her very thin
corpus callosum.

I am immensely grateful for all that I have learned
from this child. You will not find anyone who loves
her more deeply or fiercely than I do.

We are homeschooling for the second year now. She
reads pretty well. Math has been a challenge, but
she’s doing better after a recent breakthrough.
She loves books, Bible stories, music, toy cars,
VeggieTales, cheese, butterflies, ice cream, and
Boston Cream Pie yogurt. Most of all, she likes
to MOVE. She is never still, whether it’s spinning
in the tire swing, jumping on the trampoline, or
cruising the house on roller skates. She talks
non-stop and sings well. She is learning to play
the piano and has a love for American history.
She is deeply sensitive and loves enthusiastically.

We are blessed to have her. When I think back to
that time on the table when I did not know if she
was dead or alive, it takes my breath away. When
I think of the vegetative child that the neonatologist
predicted, it makes me smile to realize what we were
“supposed” to have versus what we actually have.
We do not know what the future holds for her, but
we do know that it will be enthusiastic, it will
be spirited, it will be creative, and it will be
something that someone with a normal energy level
could never accomplish. God has BIG plans for her.

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 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 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.

Tuesday, July 27, 2010

ACC - Meeting Milestones

Reach for Hope...then hold on to it always.

When your child has Agenesis of the Corpus
Callosum one of the most difficult things to
deal with is coming to terms with the unknowns of
ACC and learning how to deal with the uncertainty of
when your baby/child will meet his/her milestones.

When my child, Matthew, was a baby I had to stop
reading all of my 'what to expect' baby books for a
typically developing baby and put them away --
out of my sight.

I found it too difficult to read those baby books
for typically developing babies because my child,
who has Agenesis of the Corpus Callosum, was not
measuring up to those 'typical baby timelines'
for milestones.

Reading those books just caused me more grief.

In fact, back in 1998 this is what I wrote:

"Good-bye to baby books and their developmental
milestones timetables...
Hello sweet, precious child who will teach me more
than any book ever could!"

The other day I read a note on one of the ACC support
groups that I belong to. It was from a Mom who
I know that has a 6 year old child with ACC (plus other
medical conditions) in reply to another mom who has
an 11 month old baby with ACC.

The mom of the 11 month old baby with Agenesis of the
Corpus Callosum expressed a familiar feeling that I am
quite sure many other moms--myself included--will be
able to relate to:

"I'm getting a little down lately as it really seems
like its coming along so slowly and I'd just like to
see a BIG milestone!...It's so hard not to know what
his prognosis is."

I asked Sabra, the Mom of the 6 year old child, if
she would be willing to allow me to post her reply here
for others to read. She wrote back to me:

"Of course you can use my post, if I can help at least
one other parent then it is worth it. You can also feel
free to post my email address, if they want to contact
me for other questions or concerns."

This is her reply to the mom of the 11 month old baby
who has ACC:

"I have a beautiful, precious, and unique 6 yr old
daughter with partial ACC, hydrocephalus, etc. We
found out about Emily’s ACC at 5 months via MRI for
her hydro. I was told absolutely nothing in regards
to her ACC just that she needed to see a neurosurgeon
in the next 2 weeks.

Emily’s first 2 years were the hardest, just as one
doctor told me they would, with all the doctor’s appts
and therapy but it would get better once she turned 3.
At the time I didn’t believe him because we were seeing
doctors and therapist 4-5 days a week and I didn’t see
any end to it. But he was right, once she turned 3, she
started seeing her doctors every 3-6 months and now she
sees most of them once a year except her eye doctor she
sees every 6 months.

Emily taught us to appreciate the baby steps she took in
her development. Emily also started EI (Early Intervention)
at 9 months until she aged out at age 3.

Here is a little timeline of when Emily reached

Sitting up= 1 yr

Crawling= 15 months

Walking= right before she turned 18 months

Talking=she said 3 words at 2 ½ years and then all
of a sudden at age 3, she started talking in 3-4
word sentences

Undressing self= 3 ½

Dressing self except shoes and socks=4

Putting shoes on byself(Mary Jane and slip on)=4 ¾

Able to put socks on by self= 5 ½

Self feeding= 18 months

Using utensils= 3 ½

Imagination play= 4 ½

Interactive play versus side by side play= 4

Writing her name= 5

Beginning reading=5 ½ but is slowly progressing,
math is her strength.

I have learned that any milestone she reaches or
does is a huge deal for us even if it is considered
normal development with other families. We have
learned by experience and talking with other parents,
our kids have to work much harder to do anything or
learn anything. I also discovered when Emily was in
EI if she was working on one skill, the others were
ignored or on the sideline, her brain is able to only
work on one skill at a time. So while we were working
on her feeding, her speech was nonexistent-but she was
still taking everything in and filed away to be used
when the time was right. Emily was blessed with having
her older siblings who loved to help her learn new
skills. Emily has taught them empathy, compassion,
understanding everyone is unique, big support for each
other, appreciation of achieving something that was
hard, and unconditional love.

You will be amazed at what your child is going to do.
You are going to look back in a few years and realize
how much he did accomplish. Have you taken him to get
his eyes checked? A good pediatric ophthalmologist or
neuro-ophthalmologist would be good. Emily’s vision in
itself is fine but she has no stereopsis vision-she
cannot see in 3D, and binocular vision disorder. She
also has Strabismus which she had 3 surgeries to correct.

It was recommended by parents on another group to get
her vision checked since it is midline and anything
midline can be affected.

When Emily finished Kindergarten (KG) this year, she
was given the Most improved student award, I was so
proud of her and how far she came this year in KG.
She also received a Math award, being able to count
to 100, and a Reading Award for recognizing the letters
in the alphabet and the sounds, and had the gold star
on it for being able to read all of her Word Wall words.
So if I have to pinpoint the first Big milestone, it
would have to be her KG year. Even her special ed
teacher, her OT, and regular ed teachers all said she
was not the same child at the beginning of the year.
They were even amazed at how far she came. To be honest,
when we had our first IEP meeting before KG, I asked
them if I would be able to hold her back if she was not
ready to move on to 1st grade. I was prepared to have
her repeat because at the beginning of the year, she
was really way behind. She seems to prove me wrong
every time. She was promoted to 1st grade with minimal
assistance, she will have resource for language arts
block only and may only need it the first 9 weeks and
the rest of the time she is in a general ed classroom.
She is still socially and developmentally behind about
a year to a year and a half but when I look at where she
was and how hard she had to work to get there, I think
she is perfect. It was recommended when I first joined
the ACC group, was to throw out the developmental
timeline, Emily had her own and would do them on her
own time. We just use it to get services she needs.

The hardest part for me was to not compare Emily to
other children her age or younger who were doing things
she couldn’t or with her own siblings.

If you have any more questions or want to email me,
please feel free to do so at

Before you know it, in a few years this will be you
posting to a new mom your experience with raising a
precious and wonderful child with ACC. You will sound
confident and will be able to give the new parent help.

I hope I have helped you with sharing my journey with
raising a child with ACC. I have to say it is never a
dull moment and when you least expect it, it will happen.
It is also recommended to play music all the time-good
for brain development."

Sabra, mom of Emily 6 who has partial agenesis of the
corpus callosum, colpocephaly, arnold-chiari 1 malformation,
sensory integration disorder, strabismus and hydrocephalus
w/VP shunt, and mom to four other children.

Thank you so much, Sabra, for your willingness to
reach out to others and offer help, hope and support.

Look for signs of hope...they are there and
do sure not to overlook the small
signs of hope while you wait for the big

Wednesday, July 21, 2010

Summer Reading

There are so many fun and wonderful things to do
during the summer time with your kids.

This summer one of the things that I decided to do
with my child, Matthew, who has Agenesis of the
Corpus Callosum, is the summer reading program at
our local library.

Matthew is very fond of books and has always loved
looking at books and listening to me read to him
since he was a toddler.

I am a big fan of borrowing books from the library.
It affords the opportunity to read and enjoy so many
new books with your child without spending the
money to buy each and every book that you read.

Of course, there are always a few favorite books we
discover that Matthew loves to read over and over
and those are the books that I will gladly
purchase for him (new or used) and add them to our
own book collection.

Several months ago when I was researching information
for the ACC Reading and Comprehension document,
I stumbled upon a particular author who writes
children's books by the name of Karma Wilson.

So we borrowed some library books by Karma Wilson.
They are a big hit.

A few of Matthew's favorites are:

Bear Snores On by Karma Wilson

We love this book! Mama and Matthew both. The
rhythm of rhyme carries the story along and
gives an appealing catchy quality that keeps
Matthew's attention. The "bear snores on" is a
phrase that appears often on the pages. Matthew
will anticipate it and is always ready to add his
own snoring sound effects. He laughs often
through this book when "wee slurps" (deee-licious),
"big burps" and one enormous "achooooooo" abounds.
This is a very fun, interactive book to read with
your child.

Check out the cute video clip of the book...

Bear Snores On

Matthew also likes:

Sleepyhead by Karma Wilson

A very sweet bedtime story with a mantra that makes
Matthew laugh. Three words that even my child (who is
non-verbal) can convey when it comes to bedtime...

"Just one more"

I also pay close attention, while reading blogs, to
the books that other kids like. I have found two
very special books that are Matthew's favorites
this way.

The first book came from reading one of my favorite
blogs about "Bugg" who has ACC. His Mama showed a
book called Happy Mother's Day by author Steven Kroll
on her blog and that's how I discovered what turned out
to be one of Matthew's most requested bedtime stories:

Pigs in the House by Steven Kroll

This rhyming story about three pigs who make
a "great big pig mess" is amusing and very cute.

Thank you bunches and bunches, Bugg's Mama.

And one more story we adore came by seeing a
picture of the book on another favorite site of mine...

Sea, Sand, Me! by Patricia Hubbell

An adorable book about spending the day at the beach.
We actually took this book on our recent family beach
trip. It's a favorite book of Matthew's and one that
he chooses to read every night.

Take a sneak peek inside the book.

Thank you lots of bunches, Violet and Mahaela's Mommy.
Violet is nearly 4 months old and she has agenesis of the
corpus callosum.

We are still exploring books this summer from our
local library and I have a few new stories on hold
that I can't wait to get and read with my child,

Have fun this summer and enjoy reading.

Does your child have a favorite book?

From pre-school to high school...I'd love to know
what your kid's favorite books are.

Friday, July 16, 2010

ACC and Moms-To-Be #3 story

This is the third story about ACC and Moms-To-Be.

The third story was written as a letter last month
and given to me to pass along to a Mommy-To-Be
that I was e-mailing with who had just received the
news that her baby has ACC. The Mom-to-Be wanted
some input from other parents.

When I decided to create this new ACC and Moms-To-Be
section I asked the author of the letter if she would
be willing to share her letter, that was originally
intended for the "New Mom", here on the blog in the
hopes that it would have the chance to reach out and
touch even more new Moms.

Thank you, Trecia, for sharing your letter with
a lot more Moms-(and Dads)-To-Be.

"Dear New Mom,

First congratulations on your pregnancy I know you
are filled with hope and worry but I also hope that
you will be able to relax and enjoy this time until
your little one is born.

My name is Trecia I'm 48 and the Grandmother to Joel
David who is 21 mos old and has complete agenesis of
the corpus callosum c-acc. I'll try to keep our story
as short and succinct at possible.

My daughter Cassie was 21 weeks pregnant or thereabouts
when they noticed an increase in size of Joels lateral
ventricle on ultrasound, they monitored this for a few
weeks and noted a continued increase in the ventricle
size. I can't remember at what exact moment in the
pregnancy they determined that Joel probably had
hydrocephalus based on the ventricle size but at that
time they did an amniocentisis to see if there was any
genetic problem with the baby that would cause it.
The amnio results were clear of any other "problems."
Of course at this point in time we were filled with
worry and concern and the thoughts of all the things
possibly associated with a baby who has hydrocephalus,
seizures, shunting etc. Cassie had been referred to a
hi risk OB/GYN dr at this point and was seeing him every
couple of weeks. The Drs there told us many different
things, the hdro was mild the hydro was moderate, it
might not even be hydro boys often have big heads yada
yada yada. With each ultra sound we saw our baby boy
moving and sucking his thumb and we knew we loved him
no matter what.

At some point late in the pregnancy Cassie underwent
a fetal MRI and that was when we learned he had c-acc.
The Dr who conveyed this news acted as if it were a
death sentence and said to my daughter "Mom this is not
your fault". We sat in agony for 30 minutes waiting
for a neonate Dr to come and talk to us about this brain
abnormality. That Dr basically explained to us what the
corpus callosum was and said that Joel didn't have his.
He told us there was no way to determine to what extent
this would effect Joels life he said some people went
there whole lives never knowing they were missing their
cc and would do just fine. He also told us that there
were possiblilities for developmental delays and other
physical problems as well especially anything associated
with mid line as the cc is in the "middle" of the brain
often other organs that are in the "middle" of the body
are affected. We got the big "wait and see" talk
basically and that is what was the hardest, not knowing.

Joel was born vaginally without incident and spent only
a few hours in the special care nursery before going to
the regular newborn nursery and then home with Mommy,
Grandma and Grandpa two days later. They did an
ultrasound of Joels head while he was still in the
nursery and ruled out hydrocephalus, he never had it,
his ventricles were just enlarged as part of his acc.
Just a note Joel failed his newborn hearing screening
bilaterally, a lot of acc babies do. He later passed
his hearing tests.

Joel was a healthy infant for the most part he ate well
and slept well, sleeping through the night at five weeks.
He had a couple of ear infections and minor respiratory
infections though nothing serious. He always had a
snoring or gasping sound when he breathed though so when
he was a little older he had a sleep apnea test and a
swallow study which led to the removal of his adnoids at
about 15 mos old, when they did that they found Joel had
a mild sub mucous cleft palette (that's midline) like I
mentioned before, it was not serious enough to be of great
concern and they did no surgery to repair it.

Your baby will qualify for early intervention services
based soley on the diagnosis of hcc. Those types of
services include therapies such as physical, occupational/
developmental and speech. Some acc kids have low muscle
tone in different parts of their bodies and need therapy
to help strengthen those areas. You'll also meet a whole
array of Drs once your little one is born, he'll probably
be referred to a neurologist and should also be seen by a
pediatric opthomologist as often eye problems are present.
Also they may refer you to a genetecist. Joel started
physical therapy at around 6 months and he also gets
occupational therapy once a week and has just started
speech. Joel has been slightly developmentally delayed
since birth he hit his milestones a couple months later
than the "norm" but HE HIT HIS MILESTONES. That's
important to remember our acc kids get there sometimes it
just takes longer and more work on their part. There's a
book for children called ACC and Me and it describes the
lack of the super highway knows as the corpus collosum to
having to take back roads and side roads instead of that
super highway that is the CC. It just takes a little
longer to get there but the journey is much more
interesting and the final destination is the same.

I know you must be totally overwhelmed with all the
information being thrown at you but please don't
despair. We thank God every single day for the joy
that is Joel David. He is 21 mos old today and is the
love of our lives. He's a happy outgoing little boy
who is walking, dancing, climbing, (running his Grandma
ragged) etc etc. He recently graduated out of physical
therapy because he is doing so well and now we are
concentrating on speech, he knows some sign language
and is attempting to speak but isn't quite there yet,
we KNOW that he will though, when he's darn good and

I hope that hearing other peoples stories will help
you as you begin your journey with your little one.
I feel so blessed to be able to pass on to someone
else what the acc list did for me which was provide a
"family" of people who had been there done that and
who could offer advice and reassurance where often the
Drs cannot since acc is not a widely understood brain
abnormality. You will be your babies biggest and best

I've included a picture of Joel in this e-mail because
as shallow as it might sound when Cassie was pregnant
I was worried about what "acc babies" looked like and
someone on the list was kind enough to send me a picture
of their perfectly adorable little boy and it comforted

So I've about run out of steam here, I could tell you
cute Joel stories all day long but that would be way to
"Grandma like" and we wouldn't want that to happen."

Take Care,
Trecia Grandma to Joel David c-acc 21 mos old and the
love of our lives"

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 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 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.

Wednesday, July 14, 2010

ACC and Moms-To-Be #2 story

I received an e-mail on Monday from a Mommy who
expressed an interest in sharing her ACC story.
I was thrilled to hear from her and I am so excited
to be able to share her story here for you to read.

Thank you, Shawn, for taking the time to write your
own story from your heart and for your willingness to
reach out to other new Mommies and Daddies.

"My name is Shawn Ploe, and this is my experience in
finding out my son had ACC, Agenesis of the Corpus

Hell and Heaven - That's what I will say we went through.

Most times people start that statement with Heaven first.
but for this story it wasn't like that.

So to begin, I have type 2 diabetes, and have been since
2003. With my sugars being under control the doctors didnt
have a problem with me being pregnant. They just wanted
me to watch them carefully, which we did. I had the blood
sugar numbers of a non-diabetic person for my entire
pregnancy. The doctors and nurses made such a huge deal
about how proud of me they were. I trudged to that
specialty Endocrinologist appointment every 2 weeks
with numbers in hand. And they were happy with
everything that I was bringing them.

Then about midway through my pregnancy the ultrasounds
started. Its so funny, some women (even some of my friends
included) only got 1 or maybe 2 ultrasounds their entire
pregnancy if they were lucky. They all gawked at me because
I had one practically once every 2 weeks from mid pregnancy
on. I would bring in my little VHS tape and they would
record every little thing we saw. So in a way, I was spoiled.
Little did I know that they were doing everything they could
to find something wrong. But at this point I was blissfully
unaware of that fact.

So my pregnancy went along perfectly, until about the 28th
week. I was so happy to be pregnant, considering all the
problems we had had trying to get pregnant it was my dream
come true. Little did I know I was about to take a roller
coaster ride I would never forget!

Around my 25th week they had told me that one of my sons
Ventricles in his brain looked bigger than the other one,
but that they would watch it, didn't think they needed to
be worried at this point, and they blew it off.

Round about my 28th week I had an ultrasound and the Dr
told me he believed there was something wrong with my
baby boys heart. He sent me to a specialist. I was
absolutely petrified. I had yet another ultrasound at
the heart specialists office. He looked and looked and
looked. and then finally he looked at me and just said,
"Breathe". I exhaled, and he said, "His heart is fine.
There is a slight murmur. But there is nothing wrong."
I was relieved to tears. I sat up and cried my eyes out
while my husband finished up with the doctor. We felt
as if we had averted some great disaster.

Life returned to normal, and back to my appointments I
went. Well 2 short weeks later they again told me that
one of his ventricles looked bigger than the other.
My brain was screaming here we go again!!!! They had
me come back a week later to take a look at it again
and this time they wouldn't let it go. For 30 minutes
the ultrasound tech continued to scan over the same
spot while I laid there and watched my son do back
flips in my belly. I was alone for this ultrasound as
my husband was working. The ultrasound technician told
me she would be back in a minute, she wanted the doctor
to have a look. So I laid there for about 10 minutes
thinking that I had had about enough of them trying to
pick my little bundle of joy apart. Finally, the Dr
(I will call him Dr Gottabe, because in his eyes theres
just gotta be a problem!) came in and the Technician
started telling him where to scan. And then they started
arguing over my belly. And by arguing I mean they were in
a very heated discussion over top of me, as if I wasn't
even there. And they were spitting out all of these very
scary scientific terms that I had no comprehension of. I
was trying so hard to make a mental note of all of their
terms so I could look them up later, but they all ended
up a garbled mess in my head. Finally after they were done,
Dr Gottabe looked at me and said "Hydrocephalus" and I was
like, OK. Can you explain that to me? And he did. I think
I took it rather well. But after the heart scare I think
I was half ready to scream bull**** at Dr Gottabe! He told
me he was sending me for an MRI the next week to confirm
the diagnosis. I was thinking, A WEEK!? I have to wait a

So for a week I read up on Hydrocephalus, and cried, this
was all my fault, after all. I couldn't even make a kid
right (yes I know how silly it sounds now).

But the day finally came for the MRI and I was well armed
with my husband, who always knows how to make me feel
better about everything. So I had the MRI which might I
add is very difficult at 31 weeks. I almost passed out
several times for having to lay flat (don't they know
pregnant women should not lay flat!?) When the MRI tech
was done he helped me up and sent me on my way to put my
clothes back on etc etc. As I was going to the dressing
area I could see the scans on their screen and I was
craning my neck to see what they were looking at, as if
I could understand what all the different "slices" meant....
When I came back through, I asked them what to expect
now. And they told me, "Your doctor will have this
report in about 10 minutes. Call him." I was so thankful
for that little piece of information because I did not
want to wait forever for Dr Gottabe to call me, to find
out the result!

My husband and I stopped at a Wendy's near the hospital
to have a quick lunch. I was immediately on the phone to
the Dr Office. and all I was getting was a recording.
Over and over again, I started to panic. I finally left
a message that was something to the effect of, "I would
really really really appreciate a call back today as I
do not believe that it will be conducive to my mental
health if I have to wait through a whole weekend to get
these test results!!!" And there I was crying in the
Wendy's. Hell I didn't care what those people thought.
I just wanted some sort of resolution.

So my husband and I parted ways, back to work for both
of us. I will never forget sitting in my office at my
desk when I got the call from Dr. Gottabe. He called me
himself, not a nurse, but him.
"Mrs. Ploe? This is Dr Gottabe and I have your test results."

"OK thank you for calling me back I really do appreciate
it", I said.

"Well there is good news and bad news. The good news is
that it is not Hydrocephalus. The bad news is that it is
Agenesis of the Corpus Callosum."

"What does this mean? What is it? and how do you spell
that!?", I asked.

"Well it means that the bundle of nerves that connect the
right and left sides of the brain is not there. it did not
form. Sometimes it can be partial, but in your child's case
it is absent all together."

I started to cry, "What does this mean? what are we looking
at? Mental Retardation? what?"

"Well, that's just the thing, we don't know. We cant tell
until he gets here. He could come out perfectly fine, or if
he has other syndromes or problems it could be worse. There
is no way of knowing", he said to me.

At that point I had gotten my husband on a conference call
so he could hear everything as well, and I let him ask the
questions because I couldn't hear anything anymore. I was
gone. I was twisted inside myself, that's the best way to
describe it. I went between searching the Internet for
everything I could find, to crying so hard that I felt numb.
The Dr. had told me not to worry everything would be fine,
and all I could think of was that he was crazy and it must
somehow be his fault. He had searched and searched and
searched to find something wrong with my kid and he
couldn't stop until he did.

I scheduled an appointment with my regular OB hoping to
find some sort of solace or maybe even more information.
When she walked into the room I just burst into tears,
she hugged me and told me she was really sorry that things
had gone down the way they had. but that it would be okay.
I clearly remember asking her, "Now what?!" She basically
said we wait. That I was going to have this baby and then
we would see what we needed to do on the other side of
that. Somehow she helped me to see that it was what it
was. I couldn't do anything about it, so march forward.

For a week I cried I went to work every day, and all I
could think about was ACC and my baby. The last month
of my pregnancy was sheer torture. I went through the
motions but I just wanted it to be over. I wanted things
to progress so we could access our situation.

Then, after about a week, I ran across a guy on the
Internet named Kyle. Kyle was in his 30's with ACC, and
incredibly he had only known about it for 2 or 3 years.
I was intrigued. I emailed him and told him my situation.
I wasn't sure what i would get back from him, or if he
would respond. Imagine my surprise when he did. He told
me that he had basically gone into the doctor for stress
related headaches thinking their might be something wrong.
The Dr. helped him with the stress related headaches and
then told him something so profound that it changed his
whole life. He had gone his entire life thus far without
knowing that he had ACC. And that he should be proud of
that. By talking to Kyle he helped me to see that no matter
what, not only was my son still going to be my whole world,
he was going to be this special unique kid. And that there
was lots of support out there and everything would turn out.

So from this point on, I started to relax a bit. The ball
in the pit of my stomach started to calm itself and I let
go a bit. I think this is about the time I finally looked
up to God and said, "This problem is yours, do with it
what you will". I also know that we were on many prayer
lists. Literally thousands of people had our names in
their prayers. This helped a bit more.

Around this point I had gotten uncomfortable, and I was
joking with people telling them that I was serving an
eviction notice. This baby was getting OUT! Everyone
thought that was funny.

So, on February 14th I went in for an amniocentesis.
Dr Gottabe said that if the fluid was clear he was ready
to be born, if it was cloudy we would have to wait another
week. Yipee the fluid was clear! We celebrated at the
Cheesecake factory that night with my Brother and his
girlfriend (one of my friends). We had a nice Valentine’s
Day dinner, and then went home to try to get some sleep.
If I had a penny for every time I had to get up in the
middle of the night Id be a rich woman!

February 15th I went to the hospital and they prepped me.
Ohh boy, what a mess I was for this! And to top it off,
my c-section gets bumped for an emergency, so I wait
while they do the procedure to someone else, and then
re sterilize my procedure room. I will never forget my
son’s birth, I believe it was the most eye opening
experience I will ever have. That whole TV scene you see
where they just pop the baby out.... NAH that's not how
it happens!

They took me into the room where the procedure was going
to happen and I'm pretty sure my heart started to skip
some beats from nerves. They had me sit on the table while
they continued to lay everything out. My mind was going
about a million miles a minute. My husband was not allowed
to be there for the epidural, umm hello?! Not good for my
nerves. So they had me sitting on the table and they told
me they were going to do the epidural, and I start to cry.
And they were trying to calm me down. and I will never
forget the guy that was in front of me because he hugged
me. and he patted me on my back and told me "Miss
everything is going to be alright." and I thought to
myself, ohh dude, if you ONLY knew! He was the kindest
most gentlest man, and if I could ever thank him for his
compassion it would be a high point in my life.

Back on track - Epidural was in (I think they did a spinal
too). All I remember is them telling me it had to go
straight down my spine so if I felt it hitting the left or
right side of my spinal column i should just say left or
right. So the whole time, I yelled, "LEFT LEFT LEFT LEFT
LEFT!!!" and the lady kept saying, "I can’t get anymore
right!!" I was thinking, I'm doing what you told me to!!

A few minutes later....

Yippee they were pinching my legs and I couldn't feel a
thing. But I was still crying, they laid me down and my
blood pressure started to quickly drop. And the whole
room spun around a bit. Right about that time my husband
walked into the room and was wondering what the heck was
going on. They finally got my blood pressure straight and,
there he was, sitting at my head. This man is my whole
life and I am so blessed to have him. But I was still
bawling my eyes out with fear. My OB came in and she took
one look at me and said, "why are you crying?! do you want
the first thing your kid sees to be his mother bawling her
eyes out?!" Nice try Doc but that isn't working on me! So
they started the procedure. Now I will be the first to tell
you that I am not one of these women who thinks that they
have to have a baby naturally. Nope! I had to have a
fibroid removed when I was younger, and this ensured that
I should have a c-section and I was perfectly happy with
that! So the c-section suited me just fine, but I was still
scared of being awake while they were cutting me open and
rooting around inside my body!

So happy joy I didn't feel the incision! and then they
started squeezing me like a tube of toothpaste. I mean they
were pushing so hard the table was moving. I was like,
"Umm this is NOT what I have seen on TV" And everyone in
the room just thought that was hysterical. I'm here to tell
you that Television has it all wrong! So they started pushing
just below my sternum and they squeezed this kid right out
of me like you put your toothpaste on your brush. Weirdest
experience I ever had.

And then I heard it, my Son’s first cry. And I watched as
they took him over to check him out, AP GAR blah blah blah.
And the words out of my mouth were, "Is he okay?!" and my
husband said, "he is fine hun, why do you ask?" And then
came the drugs. As soon as that baby was out of me they
were pumping me full of some sort of high octane cocktail.
If they had asked I could have told them that I'm a cheap
drunk, I'm pretty sure they could have cut whatever it was
in half and saved us some money! But dang I was a mess. I
started watching the time on the little table they were
using to check him out. it had started counting up the
minutes since he was born. and somewhere in my drug
induced state I realized that I still hadn't held my baby.

The nurses invited my husband over, "Dad, would you like
to hold your baby?" My husband looked at me as if to ask
if it was okay?! I sort of flipped my hand in some way
that must have indicated to go ahead. And then I saw the
most beautiful thing ever, the two most handsome guys in
my life together for the first time. I could really see
my son now. He was this beautiful baby boy. He had this
head of dark hair and I fell in love.

Sometime later I remember them rolling me into recovery,
and finally after 45 minutes on that little clock on the
table, I was able to hold my son for the first time. Yes
it was 45 WHOLE minutes before I could hold him!!

Here is where Heaven finally kicked in, for a minute.

It came back later the next day, but only after I was
so sick for an entire day from the cocktail that they
had pumped into me.

About 4 hours after he was born they took him for the MRI
to confirm the ACC Diagnosis. All of that is a blur to me.
I remember a geneticist coming in too, and telling us that
the only thing that he could find wrong with our son was
that his nipples were a couple of millimeters farther apart
than most kids. Of course as new parents we were freaking
out and asking what this meant. Dr Geneticist smiled at us
in that knowing way and said, absolutely nothing! He looks
great. RELIEF!

We met the Dr who is our baby's Neurologist for the first
time while we were in the hospital. He confirmed the ACC
Diagnosis, but also said that he couldn't find any other
problems. And that our son looked normal and healthy. To
just go with it. Treat him like you'd treat a new born.
and then the words that he spoke to me that were so
powerful I still get chills when I hear them today is
that, "The brain is a very powerful organ." It has the
ability to do so many wonderful and amazing things.
And that is so true.

Our son is 3 years old now! and he is absolutely perfect
in every way. He loves soccer and basketball (really all
sports). He has had some slowed speech issues (mostly
articulation) but this has allowed us to make some
wonderful friends in speech therapists. And they have
really helped him come a long way (along with a Frenectomy -
he was tongue tied). He is the most outgoing kid, and he
has met and exceeded every one of our expectations so far.
His Neurologist is in awe of how wonderful he is doing.

I think back to that scary diagnosis and everything we
went through, and I know I would do it all over again
if it meant I would have my son to hold.

To parents who are going through this right now, please
know that there are others who are going through and
have been through what you are. Doctors don't always
have the right answers, and they certainly don't handle
every situation with wonderful tact. But there is
information about ACC out there, and it is growing.
Find it, arm yourself with everything you can. Join
the forums and learn from other folks who are walking
this journey with you.

I don't post a bunch on the forums, but I read a lot.
I try to reach out if I think I can help. And I am so
thankful to have all of these wonderful folks, like Kyle,
and Araminta (another Adult with ACC from the forums)
who give me hope and inspiration that my kid can live
a great full life, despite ACC."

3 year old Connor

You can see more pictures of Connor and his family
at Connor's Mommy's Blog

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 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 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.

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

Tuesday, July 6, 2010

Sensory Play and the Cello

My child, Matthew, has Agenesis of the Corpus

He loves music!! We have been taking him to
music therapy for about a year.

One of the many instruments that Matthew has been
playing at nearly every music therapy session is
the cello. He is not taking music lessons.
He uses the bow and also his fingers to
play the cello along with his music therapist.

Now typically a person plays the cello with a
bow or their fingers.

NOT Today!!

At today's session his music teacher, Marion, placed
Matthew's bare feet on the cello and then SHE played
the cello with the bow.

Matthew absolutely loved the sensory input that
he got through his feet each time his music
therapist moved the bow across the cello strings.

The moment the bow stopped moving, Matthew's
fingers went to work signing "more, more, more"
and this cello-playin feet-thrivin duo created
a sensation that lasted about 15 minutes.

Now here's where the beautiful music part appears.

The cello was then removed from the floor and
placed upright for Matthew to play. Matthew played
the cello for another fifteen minutes...using the bow
for about 10 of those minutes and his fingers for the
other five. This is the longest and most remarkable
cello playing session that Matthew has had in the
entire year.

My husband snapped a picture of Matthew with his
feet on the cello and when he witnessed Matthew's
remarkable cello playing accomplishment [post
cello feet sensory input] he said,

"I was surprised how well he did playing the
cello after she played it with his feet on it."

"It's like he just became more aware."

The sensory input that Matthew received through
the musical vibrations to his feet allowed him to
play the cello with the bow for a much longer
period of time and he did a better job of holding
the bow himself (only needing help with his fingers
on the bow a couple times). In the past he would
only bow for a very short period of time and he
needed much help with his finger placement on the
bow. He would also let go of the bow often and
need help to grip it again.

He was also much more attentive and focused on his
cello playing and he listened closely to the music
and sounds that he was making.

Now, I have to tell you that I could kick my own
backside because I didn't attend today's music therapy
session and I wasn't able to witness this musical
extravaganza sensation for myself. Matthew's dad took
him today, took a photo with his cell phone...and
remembered to tell me.

Revealing the story here for you to read took a full
fledged dental chair interview between Matthew's Mom
and Dad.

Sensory input is fascinating and when you discover
one of those sensory input moments that allows your
child to be awakened in such a miraculous way, you
just want to jump for joy!!


watch video of cello input to his feet from another music session.

I sit in a chair just a few feet away from Matthew and can feel the strong vibrations from the cello in my own feet on the floor.

When Matthew was very young, he also had a similar
experience during his physical therapy sessions.

If the physical therapist would put Matthew on the
platform swing at the very beginning of the session
and do a lot of spinning and swing movement with Matthew,
he would respond to the entire physical therapy
session much, much better. Again, the sensory input
for Matthew that came from the swinging, twirling,
spinning, moving swinging made a world of difference.

What type of sensory input do you notice helps
your child? Or if you are a music therapist or
other therapist I'd love your input as well.

Matthew's Music Therapist is Marion. She
founded Octave Music Therapy.

“Music speaks what cannot be expressed,
soothes the mind and gives it rest,
heals the heart and makes it whole,
flows from heaven to the soul.”
--Author Unknown