ACC and Moms-To-Be #6 Story

A few days ago I received an e-mail from Selina,
the mom of a baby born with Agenesis of the Corpus
Callosum. Selina wrote that after having read a few
stories from Moms-To-Be she felt a need to tell her
own story and to finally let her story out.

In her own words she wrote:

"Hopefully it can help someone one day."


This is the sixth story about ACC and Moms-to-Be.

It is truly a privilege to be able to post
Selina's ACC Pregnancy Story here.

Thank you very much Selina for your desire to
tell your story and for your desire to share
such a personal experience with other people.



Written by Selina:

"I was expecting a little girl in July with my husband.
We were quite excited. It was my first girl. We went
to an ultrasound at 36 weeks just to check the baby's
size. The tech viewed Chloe's head for about ten
minutes and said ok I will go write the report.

About 5 minutes later a Doctor came in and started
focusing on Chloe's head. After I sat there staring
at him for 5 minutes he said oh you probably want to
know why I'm here. Well yes we do I was getting a
little nervous.

He said your daughter has enlarged ventricles.
Ok what does that mean. He said straight out
I dont know exactly - it could mean a lot of things.
He went on to say she may need surgery as soon as she
is born, that she may be delayed and have some major
problems. That she may look funny when she is born or
have a hard time breathing. Then he just said ok you
guys are free to go. He just walked right out of the
room.

I was balling my eyes out and my husband stayed so
strong for me. So now instead of being excited to
meet her I was so scared. I just wanted her to be
here so I knew she was ok.

For 4 weeks I sat and just cried. I didn't know what
to expect.

Over the next 4 weeks I did not look anything up
did not want to get too worked up. There was a chance
she would be ok.

July 17th she was born. She took my breath away.






After she was born she did not want to eat,
did not cry and couldn't keep her body
temperature up.

She went for an ultrasound at 6 hours old and
they said we can't really tell if she has ACC
so follow up with your Pediatrician.

At 12 hours old I went to look over at Chloe next to
my bed. She was purple and not moving. I yelled for my
husband and just as he jumped up the nurses came in.
They got her breathing again and wisked her away to
special care. She was there for 4 days. We then
brought her home. Still with no idea why she turned
blue.

Her first couple days home all she did was sleep.
When we saw our doctor he sent us to a Neurologist.
We went there thinking a short simple appointment.
We were so wrong. They admitted on the spot to the
hospital for an MRI and EEG. Chloe was only 13 days
old.

We spent 13 long hard days in the hospital with her.
I have never cried as much in my life then I did that
two weeks. She had every test possible done. MRI, EEG,
EKG. She had so much done blood work x-rays and scans.

They told us that she did have Agenesis of the Corpus
Callosum. The doctors said that based on all her issues
already that she would have the severe side of ACC.
They explained it by saying some children are never
affected and some are that it was like a scale.
Based on her failure to thrive, high muscle tone,
poor motor skills, and being aged as a 3 week old
on development she would have the "severe" side.

I couldn't believe it and just kept saying to
myself it's not fair she did nothing wrong.

After two weeks there we came home. We started with
Early Intervention and their services. She started
physical therapy at a month old twice a week.

She then had genetic testing that came back with a
deletion in chromosome 6 and a duplicate of
chromosome 5. They have no idea what this means.

She has failure to thrive and had a feeding tube
placed in November at 4 months old.

She has hypertonia and her nervous system is
affected.

When she was 2 months old Chloe would scream for
hours for no reason. The doctors told us it was
just a side effect and did not know how long it
would last. She has since slowed down with these
spells.

It has been the longest 5 months of our lives.

The doctors just say well she may never walk or
talk and we don't know if she will live a full
life.

I know that we are truly blessed to have Chloe
in our lives. We wouldn't trade a second of it.
My husband has truly been a rock. He still has
not let me see him cry. I think he feels if we
see him cry he is letting us down.

Chloe is almost six months and finally smiling
and cooing.


I hope nothing but the best for anybody going
through this or anything else.

I truly wish I had more support. A lot of people
don't understand and just look away. That hurts
more then knowing Chloe will never be "normal".
Even though I'm still not sure what "normal" is.
To me Chloe is normal and as perfect as she could
be.

I don't know if you will read all or any of this
but thank you it felt good to express my story."


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.