ACC & Moms-To-Be Story #11

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

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

Tracy, Mom of Jose, read one of the ACC Pregnancy Stories
on this blog, written by another mom, and she posted a
comment on the other mom's story. In Tracy's kind
comment she also expressed a desire to share her own
ACC Pregnancy Story here for others to read.

I got in touch with Tracy through e-mail and am
absolutely thrilled and very grateful to be able to
include Tracy's ACC Pregnancy Story here.

Thank you very much, Tracy. It is a privilege to
be able to share your story here on the blog. I
thank you from my heart for your desire to help
other people (and new parents-or parents-to-be)
through sharing your own personal ACC pregnancy
experience and story.

Written by Tracy:


Jose's Story

Our story begins during my awful pregnancy. I say awful, because that is exactly what it was. I gained 120 pounds. with our son, was in constant pain, had sciatica to the point where I could not walk for two months, had false labor a few times, a cyst bigger than a golf ball, and that is just the tip of the iceberg. When I was around 20 weeks pregnant I was seeing a high risk doctor due to all of my complications. When doing the ultra sound he informed my fiancé and I that he was concerned that our son’s (yes, he was now officially a boy) nerves in his brain were not developing as quickly as he would like, and he was concerned our child may have Down Syndrome. My heart dropped. The next 12 weeks felt like an eternity. All I did was pray and research. At 32 weeks, he informed us that he could not see the Corpus Callosum and our son was so stubborn he refused to move, even after the doctor tried to move him! We returned home, said more prayers and did more research. I was set to be induced at 34 weeks due to my placenta showing signs of starting to deteriorate. I went to the hospital 3 cm dilated and at positive 2. After two days of Pitocin and Cervidil, I was still only 3 cm, and my son was now up in my rib cage. I had to have an emergency C-section.

My son arrived on June 28, 2008, at almost 9pm! He had all his fingers and toes, was healthy as an ox, weighed in at
7 lbs 1 oz., and almost had perfect Apgar scores! I wasn’t sure if my son was different, but to me he was perfect.

Jose at 1 week old

When he was around 6 weeks old, he went for an MRI at the Children’s Hospital. It was confirmed that my son has Complete Agenesis of the Corpus Callosum. I was still unsure of what this meant for us. I did the research, but there was no hard evidence, just the whole wait and see that we still get to this day! What I did know was, I had a plan. I was determined to stick to my plan at all cost. Something inside of me told me what to do. Call it divine intervention or mother’s intuition, I had already put my plan into action, and now I knew I could never stop. We went home, and needless to say I broke down. There is no way to sugar coat it, it is the worst news any mother can ever get. I cried, I blamed myself and then got up the strength to suck it up and do what I knew I had to do.

Jose at 4 weeks old

What was my plan exactly? The main focus was treating him like a normal child, with a few exceptions. I knew he would need to be comforted a little bit more, and need extra attention. This is why my fiancé and I decided that I would now be a stay at home mom. While the income would be tight, we knew our son needed the one on one care. I only gave our son Enfamil Lipil formula, because the DHA and ARA content more than doubled that of its competitors. I knew that DHA helped aide in brain development, and was dead set on it. I read to my son every night, so much so that we could read 3 full length Disney books and he would keep his focus. Call me crazy, but I also started flash cards with him the day he came home from the hospital. Letters, numbers, shapes, and colors. My philosophy was if he needed extra time to learn, I was going to reinforce it as much as possible. I didn’t sing the typical lullabies either. I sang the alphabet, and a made up song of me counting one to one hundred. This was my son, and since there was such little information out there, I decided to go with my gut!

Around 6 weeks, my gut told me that there was something wrong with my son’s feet. I took him to 3 different doctors, and they all assured me he had a good range of motion and I shouldn’t worry. So I didn’t. My son also seemed to sleep a lot. He slept through the night from the day that he was born, and most of the day. As a new mother, I just assumed that babies needed their sleep. Turned out, it was just him needing sleep. He did however; give me his first smile at 6 weeks old. I was cleaning the house, and walked into the bedroom. I will never forget how his face lit up and this amazing smile filled his face! It filled my heart with so much joy, as it was the first sign that my baby boy knew who I was.

At 3 months old my son was starting to sit up on his own, but he would fall over a lot. By 6 months old, he weighed 30lbs, and didn’t do much of anything. The doctors were baffled that he was only eating 24 ounces of formula a day, because he was so big. They even had us admitted to the hospital so they could monitor how much he was eating. Low and behold, they discovered I was telling the truth, and didn’t find anything else wrong with him. At 6 months he did bless us with his first word, Dada! He also learned to roll from his belly to his back!

Jose at 6 months old

By 9 months old, it became clear that my son was different. I saw other babies his age walking, or about to walk, but he couldn’t do much of anything. He could say Mama, Dada, Baba, and Bobo (the Spanish word for pacifier). We applied to the Early Intervention program in our state, and it was the best decision we ever made. He qualified for PT (Physical Therapy), OT (Occupational Therapy), and Speech Therapy. They showed us many things that we could do to help our son.

Jose at 1 years old on his 1st Birthday

When our son turned a year old, the pediatrician told us he would most likely be a vegetable for the rest of his life. My initial response was devastation. Once again I sucked it up, because we refused to accept it. We put more focus on him and everything in his life became a form of therapy. Our son must have heard this because within the week, he could finger feed himself and said two additional words! He also stopped using his bottle and pacifier. We also let him sleep in a toddler bed, in which he learned to push himself off of, and he never once fell off!

Jose at 18 months old
By 18 months old my son could army crawl and roll over. By 2 he could crawl.

Jose crawling on mat
Note: faces of other kids covered for privacy
By 2 ½ he could walk unassisted for a short distance in his walker.

Jose using his walker
Note: faces of other people covered for privacy
It was also like a switch in his brain flipped! It seemed as if he just woke up and started telling us things. He could spell his name, name all of the animals and their noises, knew all of his shapes, colors, and alphabet! He was also diagnosed with spastic diplegic cerebral palsy and 5 % tibial torsion.

Our son is now three years old and amazes his doctors with his intelligence. He currently weighs 55 lbs and is still getting up on his feet and using a walker! The weight issue baffles them, as well as the whole issue with only from his knees down turning in. We do Botox injections and oral Baclofen, but they barely aid with his spasticity. We are currently trying to convince his neurosurgeon to give our son a Selective Dorsal Rhizotomy and then we want to proceed with an orthopedic surgery to correct any in-toeing that is left over. We then believe that he will walk without any assistance. He is the most laid back loving child that anyone ever meets. He is filled with hugs and kisses almost all day long!

My greatest advice to anyone just getting the diagnosis, is to not give up on your child when the doctors think that things are impossible. Children with this condition are capable of so much more than anyone could possibly imagine. We are fortunate to have another family in our life with a little girl one year older than our son with the same diagnoses. They are very similar to each other in terms of reaching milestones, with the exception that she started talking earlier and she is a lot more vocal! They both seem to show advanced intelligence levels! (She also started DHA from birth) So please, look at my son as a story of inspiration. He has gone from the doctors telling us he would never be anything more than a vegetable to having advanced cognitive function, and the biggest issue seems to be the nervous system issues with the C.P. (Cerebral Palsy). However, he gets around well with his walker, and with today’s surgical technique he will most likely walk by the time he enters kindergarten!

Jose

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.