Back To School: ACC documents

Kids and school and ACC.

This is a repost because Fall is right around
the corner and that means:



Below you will find a list of ACC Educational
documents that are available.

I will continue to add any new ACC documents
that pertain to education to this page so
they are all located in one place and easy to
find.

If you are aware of a helpful document about
ACC and Education please let me know by
leaving a comment or sending me an E-mail
so that I can add it here.


ACC EDUCATIONAL INFO:

Educational Suggestions For Children With ACC


“Considerations For Educators Of Students With ACC”:
Mr. McCallum wrote this document. He is a teacher
who taught a child with ACC in his classroom. He
offers detailed and valuable information.

If you would like to receive a copy of
“Considerations For Educators Of Students With ACC”
sent to your e-mail please send me an E-Mail request.

In your e-mail it is helpful to know if you are
a parent or a teacher requesting the information.


The ABC's of ACC - printable version

ACC Reading and Comprehension

Handwriting Help

ACC: Social Skills & Challenges

Neuropsychological Evaluation

ACC & Me Children’s Book
You can get a free copy of the ACC & Me book by
registering as a first-time member of the NODCC (National Organization for Disorders of the Corpus Callosum). The book comes as part of the welcome packet. There is no fee, however, they do accept donations of any amount.

ACC: Learning Colors - printable version

Marvelous Music:
A Musical Pathway To Learning For Kids Who Have ACC

Teaching Resources

National Organization for Disorders of the Corpus Callosum
"Facts about Agenesis of the Corpus Callosum and other Diagnoses"
(NODCC) Printable PDF Brochures: (give one to your child's teacher)

Disorders of the Corpus Callosum Brochure: English

Spanish brochure
Chinese brochure
French brochure
German brochure
Japanese brochure
Korean brochure

Live, Love, Laugh!

"A good laugh is sunshine in a house."
-Anonymous


Bugg is a beautiful boy who, aside from having
agenesis of the corpus callosum, has the most
wonderful, happy-spirited laugh that echos
from deep within his soul and touches the hearts
of others with resounding joy.

The Bugg's *Special* Life is a blog that I fell in
love with from the first time I read it and I
always look forward to reading each new post
that Bugg's Mama shares. She celebrates life in
all it's spectacular moments and wraps it in a
package filled with love (and laughter) and
family.


Dear Bree, "Bugg's Mama"

I am so thankful to be able to get to know you
through e-mail exchanges and through all of
the uplifting, encouraging, inspiring words and
pictures that you share on The Bugg's *Special*
Life.

You are a blessing and you let your light shine so
brightly into the lives and hearts of so many people.

Thank you for allowing me to share Bugg's video
here for other people to see. ♥

Love,
Sandie - Matthew's Mama


"Laugh as much as you breathe and love as long as
you live."
--Anonymous




"A smile starts on the lips, A grin spreads to the eyes,
A chuckle comes from the belly,
But a good laugh bursts forth from the soul,
Overflows, and bubbles all around."
-- Carolyn Birmingham

Take a stroll through the Bugg's Life...

P.S. Bree, your house is undoubtedly filled with
super fantastic sunshine! ☼


"The most wasted of all days is one without
laughter."
--e.e. cummings

view Bugg's original video blog post

"Laughter is the sun that drives winter from
the human face."
-Victor Hugo


photos and video courtesy of Bugg's Mama

ACC and Moms-To-Be #5 Story

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

Part of this story began as a letter that was originally
written back in June and given to me to pass on to a
Mom-To-Be who I was e-mailing with who had just
received the news that her baby has ACC. I asked
Katherine if she would consider sharing her story
here on the blog in the hopes that it could reach out
to even more Moms-To-Be. I recall Katherine's e-mail
response to me was that she immediately thought "YES!"

What you will read, that began as a letter to one
Mom-To-Be, turned into additional heartfelt feelings
and became Katherine's ACC and Moms-To-Be Story.

It is a privilege to be able to post her story here for you
to read. Thank you very much, Katherine, for sharing
a very personal part of your pregnancy and the emotions
that you endured with many more Moms-(and-Dads)-to-be.



Written by Katherine:

"I remember when I was getting a routine ultrasound,
and the docs noticed slightly enlarged ventricles
on our baby's brain, I had no idea the journey I
was embarking on. We went a few weeks just
monitoring the ventricles, having no idea I was
going to have a child with a disability! Things
like this just didn't happen to people like me.
How selfish and unaware I was to think that.
At that point, the "worse case scenario" was
possible hydrocephalus where the baby might need
a shunt after birth. Well, just to be safe, we
were sent for a fetal MRI, and everything changed.
Our docs went from being so positive and encouraging,
to total devastation and talks of termination. The
same people in the offices who were so happy at
every weigh in, giving our other daughter lollipops
and framing ultrasound pictures could barely look
me in the eye. Our little girl looked so perfect
on ultrasound - normal brain size, normal body,
all organs intact and functioning normally, normal
amnio, normal fetal EKG - was this diagnosis that
bad that more than 50% of people terminate? The
only intelligent questions we could think to ask
were, "what are the chances she could be normal."
And what we quickly learned was there is no clear
answer - anything they said was contradicted by
something we would read online. What one doctor
said would be contradicted by what another said.
It seemed like nobody really knew anything - and
playing the odds was not recommended. The
conversation always circled around to termination.
I had a doctor rub my back while I was sobbing in
his office and he said, "don't worry, you can have
more children and we will just put this behind you."

At 31 weeks pregnant, I turned to the ACC list serv
as part of my research. I was devouring information
so that I could make an intelligent "decision" on
whether to terminate or not. I would stay up all
night reading and reading, then report my findings
back to my family. We would argue, cry, discuss and
debate everything I read. We would change positions
in a single conversation - it was tortuous! The
list serve was the only place where I was able to
speak with real parents, real children and see actual
kids with ACC. I wanted to see pics of kids with
ACC - that might sound superficial but I had no idea
what to expect! One Mom sent me pics of her 6 week
old son - and I passed it to my whole family - and I
kept saying to everyone, "look at how normal this kid
looks - how can he be missing this part of his brain?"
I remember one of my first posts was asking if our
daughter would cry like a normal baby, would she be
in the normal nursery, would we be able to hold her?
The answers I received and support changed my life
forever - and in a way, helped me to realize there
was no "decision" to make. ACC is not a diagnosis
worthy of termination. Just because Maggie's life
was going to be different or difficult, was not
grounds to end it.

I am a Catholic woman who never would have thought
I would consider terminating a pregnancy but that is
the situation I found myself in - it was the darkest
moment of my life and one in which I believe God
stretched out His hand and lifted me from. I prayed
daily that God would take this decision from me -
that if she was to have life, that He give it to her.
And if she was not to be of this earth, that He take
her now. Well, after all of my research we just
could not go through with termination and decided to
stop talking about it. We were having a baby and
that was the end of it!

Maggie's birth was a beautiful experience, and she
cried a gorgeous normal infant cry. She had a head
ultrasound after birth which showed no hydrocephalus
She breast fed like a champ and went home just like a
typical infant! She hit all her first year milestones,
some delayed and some early.

Maggie is the light of our lives. She is our second
daughter, and I don't know how I would ever explain
to our older daughter that we terminated her sister
because she was not "perfect." We live in a society
where we want to fix everything - and if it is not
the way we want/expect, we have to do whatever it
takes to get back on track. Well, having a child
with ACC changed the course of my life - and I liked
my life before! I did not want to change course!
But thank God we did - because this has been the
most amazing, beautiful and inspirational journey
of my life. That is not to say our lives are not
filled with worry and stress at times. ACC is a
"wait and see" diagnosis and we know that Maggie's
development can change at any time - she could
develop seizures, learning disabilities, etc. We
just take life one step at a time and celebrate
everything she can do - which right now is everything
and anything she puts her little mind to! Her
neurologist said to us at her one year check-up,
"there is no reason to think her functioning will
be limited in any way. It appears at this time
that she will lead a typical life."

It is my hope that more doctors will be comfortable
discussing positive stories about ACC. I believe
they discuss termination and worst case scenario
because they do not know a lot about it and we fear
the unknown, and they are nervous about litigation
since ACC is wait and see. If they do not counsel
termination, and you have a more severe case, you
could then sue them for wrongful birth or wrongful
life. The period of time from diagnosis prenatally
and birth should be spent preparing and getting used
to your new reality - mourning what you had previously
hoped and dreamed and developing new dreams, making
new expectations. It should not be spent making a
"decision."

Education and research will help to shed much needed
light on ACC so that other parents are not faced with
these types of decisions - so that they do not terminate
a child like Maggie. When I think that her life might
not have been, I get chills. I mean who I am to have
prevented her life to never be? I am her mother and
I could have taken her life? I was put here to give
her life! I could not imagine this world without her."


1 year old Maggie and her big sister


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:
hope@aracnet.com

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
callosum.

This ACC and Moms-To-Be section will always remain open
and available to anyone who would like to tell their story.

Stories2Learn - Social Stories

Did you watch the video?

That's all it took to spark my interest and within a
couple minutes I was enthusiastically exploring more
about the Stories2Learn application "app" to make social
stories for my child, Matthew, who has Agenesis of the
Corpus Callosum.

"Create personalized stories using photos, text and
audio messages."

"Stories2Learn works with iPhone, iPod Touch or iPad."


Price: $13.99

"Stories2Learn was developed by an educational team
consisting of teachers, a speech therapist, and a
school psychologist specializing in educating
individuals with communication challenges."

For about the cost of one book in the bookstore you can
have an endless library of personalized possibilities
to create for your child or student that meet their very
specific needs to help with: social skills stories, daily
schedules, teachable stories and so much more...that
enable photos, your own text and audio messages that you
personally record on each page.

Stories2Learn Tutorial movie download
Note: video tutorial takes several minutes to download





You write the story from the first personalized
page to the last. And, you can easily edit any page
any time...from pictures, to text and recorded
messages. You can also add more pages or delete
pages in the story. Plus you can keep on adding
new stories.





When you click on "My Stories" you will go to a screen
that says "View Stories". There you will find a list of
all of the stories you made. You can easily view a story by
clicking on the picture icon and story name.




After reading reviews about Stories2Learn and watching
the video of Leo's social story I went directly to itunes
and purchased Stories2Learn so I can use it with my child,
Matthew, who has complete Agenesis of the Corpus Callosum.

It wasn't too difficult to figure out. Within a fairly
short time after buying it I had my first personalized
story about our family beach trips up and running on
Matthew's iPod Touch for him to watch and listen to.

The story page has touchable arrows on each side of the
page that give the person an opportunity to go back to
view the previous page in the story and listen to it again
or go forward to see and hear the next page.

here's two of the 14 pages I made for Matthew:



Very quickly Matthew learned how to flip through the
pages and tap the picture to make it 'talk'.



He likes it.

And he's already watched "Matthew Goes to the Beach"
several times today.

The first time I recorded a story on Matthew's iPod
Touch, using the external microphone that came with
the iPod, it was very quiet and could barely be heard.
I was disappointed and thought that was the end of that.
But then I gave it another try and held the external
mic VERY close to my mouth while speaking the words
for each page. Worked like a charm and made a big
difference in the sound volume. Plus, I put Matthew's
iPod Touch inside his iMainGo2 speaker case so it
gets an even bigger boost of volume and works great.

Stories2Learn comes preloaded with one social story
that includes two kids playing a game and taking turns.



Many kids who have Agenesis of the Corpus Callosum
learn best through A LOT of repetition and this "app"
allows a person to see and touch the picture over and
over to hear the audio message as many times as they
want and need to hear it out loud--something my own
child did immediately upon trying out his new story.

Stories2Learn has opened up endless possbilities for
me in terms of helping teach Matthew specific skills
that he is working on learning and it gives me the
ability to completely personalize the entire story with
pictures, text on each page and we can record messages
with my voice, dad's voice, a friend's voice or a family
member's voice to turn the story into a meaningful
forwards, backwards, say it again...(and again)...
teachable video-like book that is lots of fun.

I can foresee using Stories2Learn as a tool to help
teach my child independent skills like "using the potty",
"brushing teeth" and.....a whole lot more!!

Thank you very much Look2Learn.com, the creator of
Stories2Learn, for creating a fantastically fun
teaching tool.

I'm excited about it and I can't wait to personalize
more learning stories for Matthew that meet his
specific needs.

I'm also seriously considering the idea of upgrading
to an iPad for Matthew?!?

Stories2Learn is a terrific on-the-go library of
learning fun for use with the iPod Touch, iPhone or iPad.

So what do you think?

Does it spark your interest and creativity for use
with your child or a student to help with social
skills stories, teachable stories, daily schedules
or anything else?

Many kids who have agenesis of the corpus callosum
have challenges with social skills. Receiving
social skills training in school or in the community
from a trained professional and the use of social stories
can be valuable tools to help a person who has ACC
learn and practice social skills.

Video about ACC and Social Skills

NODCC Conference Thoughts

This year the NODCC held their annual Conference
in Santa Clara, California at the Marriott Hotel
on July 31, 2010 to August 1, 2010.

If you haven't been to a Conference before, it's
always fun and exciting to hear all about the
Conference from other people who attended so that
you can get a better idea for what goes on.

And for those of you who have a baby or toddler with
Agenesis of the Corpus Callosum who have not been
to a Conference who have some fear or apprehension
about what to expect at a first-time Conference I
think you will enjoy getting a glimpse of the Conference
through the eyes of Jessi, the Mom of one-year-old
Samuel, who graciously gave permission for me to share
her viewpoint of the Conference here for you to read.
♥ thank you very much, Jessi ♥



Samuel's Mom wrote:

"We just arrived home from our trip to California,
and what a trip it was! We really had so many
amazing experiences, starting with our time at the
NODCC Conference (National Organization for Disorders
of the Corpus Callosum).

I am not sure what I was expecting going into the
conference, but it was certainly better than whatever
my expectations were, and it was just what I needed.
There were families from all over the world (we met a
nice woman from Iceland and a couple from Australia).
There were children of all ages that had a disorder
of the corpus callosum. Some had complete agenesis
like Samuel, meaning no corpus callosum formed, and
others had partial agenesis or hypoplasia. There were
lectures that focused on educational strategies,
speech and language development, sharing the diagnosis
with your child, social development, current research,
and much more! I really enjoyed discussion groups for
parents, as I came away feeling understood, hopeful,
and more prepared for issues that may come down the
road. Getting to know other families was a big highlight
for me. Talking to other parents with the same issues
and concerns, and also getting suggestions was so
helpful. I really believe we made lasting friendships,
which will be so wonderful for Samuel as he grows and
for us as well.

Coming to this conference made me more aware of how I
had been thinking about Samuel... desperately hoping
that he would reach every milestone "on time" and
basically still be "normal" despite his diagnosis.
Meeting so many people with special needs kids and
their openness and positive attitude, made me realize
that I do Samuel a disservice by comparing to the
"normal". The truth is, his brain is different! I can
say that now without feeling sad or overwhelmed. I need
to be honest with myself and others about his ACC,
because Samuel has his very own timeline for development,
and he has special needs to help him achieve his goals.
He may very well go on to do "normal" things in his life,
but if he does, it won't be without a lot of work and
persistence on his part, and that should never go
unnoticed!

I was told over and over at the conference to never
put limitations on kids with ACC. Push them to succeed!
They can do much more than we think possible. It may
take them longer, but they will get there. At the same
time, understand that there will be things that may be
more difficult for them. When they have worked to their
ability with one thing, move on to something else where
they will have success! I know that is very broad, but
it encouraged me that Samuel will have great victories
in his life (I knew that already, but it was cool to
hear real life success stories and meet adults living
with ACC!).

So my main take-away was really two things, a mix of
realism and hope... first to let go of "normal" by
accepting and acknowledging that Samuel's brain is
functioning differently. Secondly, although that is true,
his brain is amazing and is capable of learning and
growing and re-routing pathways to help him make
connections...so there is truly nothing impossible for
Samuel! Wahoo. :)

I just want to recount a favorite memory of mine from
the weekend. It was Saturday evening and after dinner
there was a dance with a DJ. As soon as the music started,
kids starting pouring onto the dance floor. There were
little ones, some even using walkers or wheelchairs, and
there were teenagers and young adults. Everyone was just
having a blast. I had a flood of happiness watching these
children have the time of their life. I could just imagine
Samuel one day dancing with his conference buddies years
from now. I came into the conference fearing that it would
feel like doom and gloom, and instead I came away so
touched to see other children just having a great time
being kids. I will cherish that memory for always.

I don't have many pictures to show for the conference,
as we were too busy! But here are a few...

Samuel getting really close to standing on his own
(which he later did for 3 whole seconds!)


Samuel's first taste of Ghirardelli ice cream...
don't worry, it was only a taste! :)"


And if you're wondering, like I was, if Samuel
liked his ice cream...here's the video answer.

See more of Jessi's pictures from the
Conference and also some family pictures in
San Francisco after the Conference.

"I came into the conference fearing that it would
feel like doom and gloom, and instead I came away
so touched to see other children just having a great
time being kids."
reprinted with permission The Von Banks

Did you attend the Conference?

National Organization for Disorders of the Corpus Callosum

2010 Conference Schedule
Note: Conference Schedule is found on pages 22-25 at link above. Page may take a few minutes to load.

Video about ACC and Social Skills

Dr. Lynn K. Paul interviews the boy who has Agenesis
of the Corpus Callosum in the video.

Dr. Lynn Paul is the founding President of the National
Organization for Disorders of the Corpus Callosum
(NODCC). She is also one of the kindest, most caring
people I have met.

At a Conference in 2001 I watched Lynn Paul lead a panel
of kids who have ACC and then a panel of adults who have
ACC in a questions-answers session that was extremely
interesting and very eye-opening.

Not only is Dr. Lynn Paul a highly professional researcher
on the corpus callosum at Caltech, she is also genuinely
and naturally skilled in interacting with people of all
abilites.

The video focuses on the social aspect of Agenesis
of the Corpus Callosum and gives insight from Tony (the
boy in the video) and his dad and stepmom's perspective.

ACC Social Skills & Challenges
This article was written with the help and input from
many parents who have a child with Agenesis of the
Corpus Callosum.

Request a copy of this document

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
contact.

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
emergency.

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
didn’t.

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
sulfate.

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
that.

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,
somewhat.

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.

The NICU

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
her.

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
with.

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:
hope@aracnet.com

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
callosum.

This ACC and Moms-To-Be section will always remain open
and available to anyone who would like to tell their story.