Thursday, January 13, 2011

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.

12 comments:

  1. Your Chloe is Gorgeous. =) Keep working and supporting her with everything you notice and she will be the best she can.
    Abbie K, partial ACC, age 20, Australia

    ReplyDelete
  2. Rhea=====grandson, Ethan, partial ACC, IS, hypotonia,January 14, 2011 at 1:41 AM

    your Chloe is truly is beautiful!!! Keep working with her, and enjoy each day as a blessing. My grandson was born on 9-10-10--09, with ACC, and we did not know, He developed Infantile spasms at 2 months and finally was diag. with ACC. He has progressed to rolling over at 16 months and is very social now. Yes, it has been a hard road, but many beautiful moments along the way!!!! We enjoy and appreciate each one...

    ReplyDelete
  3. Chloe is beautiful! Just like we say about or son Levi....Chloe is everything God intended her to be. She is a blessing, as I am sure that your life is only more blessed because of her. Bless you as you continue on this journey. If you havent joined the Listserv you should. Its a huge support system for all of us. Thank you for sharing your story with us.
    Shea
    Mom to Lilly, Cray and Levi (Hydrocephelus with VP Shunt and C-ACC in Mississippi)

    ReplyDelete
  4. You're doing a great job! Take it one day at a time with lots of prayer.

    ReplyDelete
  5. Selina and Hubby,
    Remember Chloe is a gift to you.Chloe is precious and beautiful.So... mom and dad find support so you can remain strong.
    UCSF's Dr. Sherr might be a good source for you both,Hope use's Dr. Paul's material all related to Chloe.
    Now you the parents need support,the List-Serv is very good,FaceBook has some ACC groups.
    Than of course is the NODCC check that site out.
    Remember don't be afraid to ask for as were here for each other. :-)
    We need to see more pictures too. :-)
    Vance

    ReplyDelete
  6. Selina,

    Thanks for sharing your moving story. Chloe is certainly a blessing for your family and the world.

    One thing that struck me is the statement by her doctors that she may not live a full life. I'm not sure what they meant by that, but I can assure you that she is a wonderful, unique soul and will continue to enrich your lives as you will do hers. She will make you a better person and touch the hearts of others. Her life may not be what you had expected, but it will be fulfilling to her, and as she gets older you will see that more and more.

    Know that it's OK to grieve the daughter you didn't get, because that doesn't mean you don't love the one you do have. It's easy to tell that you cherish her for exactly who she is.

    Please consider joining the UMaine Listserv for support. It's a group of wonderful, understanding folks. And you can also contact me privately if you like--Sandie can give you my email.

    Susan, mom of Beth, 22, septopreoptic holoprosencephaly and P-ACC

    ReplyDelete
  7. What a beautiful girl Chloe is! I love her smile! I agree with previous posters, make sure you are getting the support you need to adjust to the new normal you have had thrown at you. God, life, genetics (what ever you want to call it)is very unexplainable, make sure you and your husband are finding a healthy balance of acceptance and grieving. This road is hard and it is not deserved by anyone, but we were pick for it so we must do the best we can.

    Loves! and Hugs from across the Web...

    If you ever need support you can find me at itsaboutdancingintherain.blogspot.com or you can just read my son's story at ruhgeduo.blogspot.com

    ReplyDelete
  8. Selina and Great Husband,

    I was truly moved by your story. It's good to let it out. Chloe has a pretty smile, I'm sure you and your husband just adores him very much. Enjoy every moment with her and trust in God that everything will be aright. We we're chosen to be parents to children with acc coz God knows we are capable of taking care and loving them with all our heart. I assure you joining the listserve is like having a family who truly supports and understands you all the way.

    Give my hugz and kisses to your precious Chloe. I will pray for you guys and Chloe.

    Marilene, mom to Marcus Pio (C-Acc 5 months old)

    ReplyDelete
  9. I just want to thank you all for all the thoughts and prayers. They mean so much to us. It has been a very long hard 6 months. Thee have been many days where we thought we would never get an good news regrading Chloe. Each day she makes us smile and laugh. I would not want her any other way. It is so nice to know that there is support out there. I'm having a hard time understanding the listserve. I signed up but thats abou all I havebeen ableto do.

    ReplyDelete
  10. Dearest Selina and family,
    Thank you for sharing your story. Chloe looks so beautiful and I have been where you are right now. We did not find out about our son's ACC until he was 9 months old and back then the dr. said that he did not have much information on it. Eventually we were told that the severe devleopment delay my son has is due to other issues underlying in his brain but they are not sure what. The listserve was my saviour. I just want to mention that you need to take care of yourselves. Also strength will be given to you buy Chloe herself. You will be amazed at what she can accomplish and once she starts reaching her goals you will be mesmerized. The reason I know this is my son is my strength. Once he started showing his strengths and his wonderful personality things started getting better. Today we are at a place where we don't ever say my son won't do this we just say that when he is ready to accomplish this skill he will. He has surprised us so many times with things that we thought he would never do. Please look into music therapy, horseback riding, and swimming. These are things that helped my son immensley I just wished we had learned about them earlier in his life. Take life day to day and give your daugther every opportunity to do the things she is capable of doing. Also therapists(occupational, speech, physio, vision) are the most important people in your child's life as they will give you the tools to accomplish each skill. Take care and you can contact me at safrun@shaw.ca if you need any support.
    Safrun

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  11. Selina,

    Listserve is where you can post any questions you have in mind and you will be surprised on the amount of replies you will get from others who is more than happy to share you their experiences and knowledge.

    Marilene, mom to Marcus Pio (C-Acc 5 months old)

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  12. Selina,

    Thank you for sharing your story. Please continue to focus on the positive and good concerning Chloe. There is still so much that the doctors don't know. My daughter is now 22yrs old and walks, talks, eats, and is social interactive. She attends special ed classes at the high school and multiple social funtions through school and assistance programs. Christina never learned to suck from a bottle so had a feeding tube (PEG tube) until after 3 years - now she eats everything and anything. She couldn't sit up or crawl even when she was one year old. We had special therapy devices to assist her with sitting and trying to crawl, her upper body was very weak and her head was large. She did learn to scoot on her back so she always had a fuzzy almost bald spot on the back of her head. She now walks and runs - and bowls every weekend. Her only diagnosis is ACC, no genetic involvement that we know. She is special needs and functions at all different age levels. She does demand a great amount of patience from me on a daily basis, but she is living a very happy and meaningful life.

    Please continue focus on the positive and Chole's world. : )

    ReplyDelete

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