Wednesday, August 18, 2010

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

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:

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. Hi Katherine, Trecia Grandma to Joel David 23 mos c-acc. Your Maggie is flat out adorable and I enjoyed reading your story and am sorry you had such torment being faced with "the decision" Your story is much like my daughter Cassies, intial dx of hydrocephalus (never had it) fetal MRI total gloom and doom from the Drs when we could see for ourselves on the US that our boy was growing and moving and had the cutest little mouth, his amnio was also clear. I too hope that blogs like Sandies and her willingness to share her story as well as all of ours will bring comfort to "new moms" searching the net when they've been given this scary ACC diagnosis. It would be nice if some Drs took the time to search too and left off with all the termination talk! Best to you and to you Sandie, MUAH for sharing everyones stories here.

  2. Ahh Sandie...this one got me! I hope to wade through some left over pregnancy hormones and write our story with Violet. Sometimes it feels too soon and other times I feel the need to get it all out.

    You're an angel to put this all together!


  3. Hi Katherine! I must tell you that your story almost had me in tears. My daughter Nicole was not diagnosed until she was 2 1/2, but I know exactly what you're saying. She inspires me every single day. Your girls are beautiful and you should be a very
    proud mama! :) I have a poem that was written a while back that explains why special needs children are given to their parents, and I'd like to share it with you at some point. I am also on the list-serv or you can e-mail me at! Have a great day and thank you so much for sharing your story as it will mean so much to an expecting mother.

  4. Kelly...I'm so glad that Katherine's story moved you and that you are feeling a desire to share your own ACC pregnancy story about your adorable baby girl, Violet. When the time is right for will just will flow from you...and it will be the perfect time.

    It is a privilege to be able to share each person's story here and I am thankful to Katherine and every other Mom (and Grandma) who took the time to reach out and share their very personal pregnancy stories for others to read.


  5. Thank you for all the support as we share our story - and thank you Sandie for your continuing hard work! If we can save one life, educate one parent, reach on doctor or nurse - that would be such a blessing. We did not go through this to keep this amazing stories a secret - there is no shame in sharing. I felt for a while that I wanted to keep it all in, and as Maggie grows, and she amazes me, I just feel this urge to share our story and more importantly, to share how incredible these kids are!!! Love to all!

  6. We have an almost 4-year old daughter who has complete ACC. I have felt so alone for the last 4 years. All through my pregnancy, the doctors would just say, "We don't know." And that's mostly what we've gotten since then. Our daughter is such a joy in our lives, but it's been so hard never being able to get any answers, or talk to any other parents who have children with ACC. I have searched the Internet trying to find answers, but haven't had much luck. I am so happy to have found this site. Tomorrow I plan to come back and read more. I feel this urge to learn more about the people on this site, and to share our story. I've always wanted to share our story and our sweet girl with others, but I haven't known how to do it. Thank you, thank you for sharing ACC with the world.

  7. Our little family,

    Thank you so much for sharing your thoughts and feelings about ACC and your daughter. I am so sorry that you have felt so alone for the last 4 years. My heart goes out to you. I am also the mom of a child (a son) who has complete ACC. I can understand and relate to your feelings of how very hard it is to never get any answers about ACC. I am so happy that you feel an urge to want to share your story. And if you may feel comfortable and would like someone to talk to I would love to listen.

    You can e-mail me anytime:

    Again, thank you for your lovely heartfelt comment. I hope that you will not ever feel alone anymore because there are many, many families who are there for you who understand what you are feeling and what it is like to have a child who has ACC.



I am very interested in reading your comments and
look forward to hearing from you. Thank you.