Tuesday, October 30, 2012

ACC & Moms-To-Be Story #17

I am very thankful to all of the Moms and Dads who
want to tell their story about being pregnant and having
a baby with Agenesis of the Corpus Callosum.

I received an e-mail from Rossella, a mother who lives in Italy who has a young daughter with ACC.

In her e-mail she wrote:

"I am sharing below my pregnancy experience and these first years with Teresa. I know that there is a group with pregnancy stories, feel free to share my story as well. I would be happy if my story can help or inspire other parents."

The mother, Rossella, is very actively involved in the Italian ACC forum (a wonderful group) that branched out to form a voluntary non-profit organization in 2011 called Associazione Anomalie Corpo Calloso Italia, also found on Facebook, and they just recently held their very first Conference in Italy in September of 2012.

Thank you very much, Rossella, for reaching out to other people and for offering hope. It is wonderful to hear from you all the way from Italy, and it's an absolute privilege to be able to post your story here on the ACC blog for others to read.

Each story is as unique as each child who has ACC.

I believe in my heart that every ACC story told will ultimately reach out and touch the life of someone else in very special and amazing ways.

Written by Rossella

Teresa’s Story

I had a relatively quiet pregnancy. I am a United Nations worker and while expecting Teresa I was serving in Congo (Drc) and then in Haiti. So I was healthy and feeling well most of the time and working almost as usual.

When I was 33 weeks pregnant, I started to have strong contractions. I went to my doctor and for the first time he realized that Teresa’s ventricles (I hope the term in English is right!), were too big and he suspected Hydrocephalus. I immediately came back to Italy and had additional check up which confirmed the Hydrocephalus and a suspected ACC. I went through a Fetal MRI scan and the ACC was confirmed. To this day I am sure that the Hydrocephalus is a consequence of the ACC and that all that liquid just took the empty space of the CC [corpus callosum]. Anyway, I was closely monitored and by week 37 Teresa’s ventricles were 27mm. quite big so they decided to go for a C-section as Teresa needed an emergency surgery.

Teresa was born on November 12th 2009 and after two days she underwent her first surgery. I remember the day of the surgery when she came out of the operating room, she was awake, with her head wrapped in a big bandage, she was not crying, she stayed strong. This was moment when Teresa was born to me as a mother, when I promised her I would always stay strong for her.

I have to admit that those first weeks have been the most difficult moment of my life so far. When Teresa was diagnosed ACC and Hydrocepahlus a few doctors told me that she would be severely handicapped and that she could possibly not even recognize me. One doctor suggested I go to UK for abortion
(I was 8 months pregnant!). This was devastating for me as we were not expecting this and as you can imagine those first few days, both me and my husband, Miguel, went first through denial (maybe they made a mistake) then despair and finally we started to accept it. I remember very well that one day my husband, Miguel, told me:

“Imagine if we have Teresa and she is ok, without ACC and without Hydrocephalus, imagine that one day she has a car accident and she becomes paralysed or worse, what would you do then? Abandon her? Throw her away?. So, we will welcome her, we will love her, she is our daughter and we will take her as she is.”

That is how we have lived so far.

Teresa is almost three years old and she is a cheerful and always smiling little girl.

Since she was three months old we realized that she had some delays. She would not maintain her head up and would only look to her right side. We started therapy, first at home and since she was 6 months at a therapy center. She started to sit on her own at 9 months, walked with support at 18 months and walked alone at 22 months. We had a lot of difficulties with mastication (chewing food) and she first ate a biscuit on her own when she was 20 months old. In the meantime we had another baby, a boy, and I am sure that his presence has helped Teresa tremendously. She picked up her first biscuit when her brother 5 months started himself, she saw him and wanted to try. Now at 34 months she eats on her own both with a spoon and with a fork, she eats everything!

Since she was two she started to attend a kindergarten and the presence of other children have highly benefited her.

Her main difficulties remain in her “social” skills and in the speech. She only says a few words, though she makes herself understood with gestures, and sometimes she gets very frustrated for this. She seeks the company of adults as I am sure she is not able to relate to children and she is not able to communicate with them. When other children take/pull toys from her hands she is not able to defend herself, and also with her brother I have seen now that she reacts after a few minutes, not on the spot.

She likes music, dancing and singing and I have realized that if I want her to do something and she does not get it I have to sing it to her.

She goes slowly in her learning process but I would say steady. I can also say that sometimes she remains stuck for a while and then all of a sudden she makes a big step.

Like for months she was walking with a support and then one day, all of sudden I went to pick her up at therapy and she was walking on her own!

She is a cheerful girl, she is very independent in the house and she can play on her own or also engage the adults to play with her. I leave her some “quiet” time, when she can be on her own without too many inputs (school therapy etc) and we have realized that in these moments she invents her games like all children, she plays with her doll (puts her to bed, or she pretends she is on the phone) she imitates the adults like all children.

I attach a couple of pictures, so you can see her. She is the joy of our life.

2 1/2 year old Teresa

Teresa almost 3 years old

Mother of Teresa

There are many different stories and outcomes of ACC and Moms/Dads-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 E-mail me, (Sandie):

Want to talk to other moms (and dads) 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/Dads-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/Dads/Parents-To-Be section will always remain open and available to anyone who would like to tell their story.

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