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.

1 comment:

  1. Shawn, thank you for sharing your story and the pic of your handsome Connor, what a cutie! I think how wonderful it is that people like you are willing to share your story so that others may take comfort when they are faced with the "unknown" and the Dr Gotabes along with the Drs Gloom and Doom!!! I'm so very thankful to have found the list serv when we got Joels in utero diagnosis of c-acc via fetal MRI, all the posts good bad or otherwise have something to offer and make this journey a whole lot less lonely and scary place. Thanks Sandie again for you blog and allowing those that wish to share their stories her for "new moms"


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