CHARGED for the New Year {Birth Defect Awareness}

People often ask what it is like to be a special needs mom. My answer is – there is no one answer. We may all have a lot of things in common, but just like any other mother, raising each child is completely different.

I am a mother to a child with CHARGE Syndrome, and this is my story.

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My life forever changed on May 9th, 2012 when my son Kalob was born. My pregnancy went well. At my 17 week ultrasound, we were told we were having a healthy baby boy. We were so excited! When I was 32 weeks pregnant, we found out that our son would be born with a bilateral cleft lip and palate and a heart defect called a vascular ring. We prepared for his birth, and I delivered at a hospital two hours away from home that was equipped with an experienced heart surgeon. I was induced at 39 weeks 1 day so that we would have a somewhat controlled environment and a surgeon ready to operate on my son. We were unsure of how he would breathe once he was born due to his vascular ring compressing his airway. And after a very long day of labor, Kalob was born by cesarean section at 8:20pm. I was able to get a quick glance of him, and then he was rushed to the NICU. To our surprise, he was doing well and did not need a breathing tube or surgery right away!

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The days after were a blur. It seemed like each of the 29 days in the NICU, we received bad news after more bad news. Kalob was born with many more birth defects than expected. He has cutis aplasia of the scalp, a small corpus colosum, complete bilateral cleft lip and palate, a vascular ring compressing his airway, right sided facial palsy, bilateral hearing loss, a missing balance system in his ears, swallowing difficulties, a floppy airway, small chin, low set floppy ears, and many more things. Doctors told us he may never walk, talk, or coordinate the two sides of his body. He used a special bottle called the Medela Special Needs Feeder {also known as the Haberman bottle}. But Kalob still had trouble breathing and swallowing, so he used a nasogastric {NG} tube for six months to supplement the feedings he could not eat orally.

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Each day he got stronger, and on day 29 we were discharged home! The doctors decided to wait on his surgeries until he was a little older and his airway was stronger. We went home with the NG feeding tube and an apnea/heart monitor. When Kalob was two months old, we moved to Houston.

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At age three months, Kalob was rushed into surgery for a bowel obstruction. Less than two weeks later, he had heart surgery. Kalob has had four surgeries and eight procedures so far, and he still has many more surgeries that he will need in the future. At seven months of age, Kalob was tested for several genetic disorders – one of which was CHARGE Syndrome. And four months later, we received the results that he had a mutation of the CHD7 gene on chromosome 8. In latent words, Kalob had CHARGE Syndrome. This was no surprise to us. My husband and I knew he had CHARGE Syndrome long before they did the test. It was strange because it was a relief when we got the news. For once, we felt like we had answers, we belonged somewhere, and we had a wonderful CHARGE family that we now belonged to. This journey has been hard, but it has been so much easier with all of our friends we have made in the CHARGE community. I don’t know what I would do without all of their care and support.

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CHARGE syndrome is the leading genetic cause of deaf-blindness. It happens approximately 1 out of every 9-10,000 births. CHARGE syndrome often causes complex heart defects, serious breathing problems, and difficulty eating. Most individuals with CHARGE Syndrome have hearing loss, vision loss, and balance issues. These things often can delay the child’s development and communication. The letters in CHARGE stand for: Coloboma of the eye, Heart defects, Atresia of the choanae, Retardation of growth and/or development, Genital and/or urinary abnormalities, and Ear abnormalities and deafness. However, these acronyms are no longer used as criteria to diagnose an individual with CHARGE Syndrome.

Despite all of his set backs, Kalob is doing very well. He has continued to prove the doctors wrong. He is currently crawling, pulling up and cruising, walking with a walker, starting to babble and use American Sign Language, and eating 100% orally! Kalob is very determined and is my little social butterfly.

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Kalob is worth every effort I put into life. Some days I wonder how I am going to make it to the next day. He keeps my batteries CHARGEd. Each day I see his crooked smile, and I know this life is worth it. No matter what obstacles we face, we will continue to CHARGE on.

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For more information on CHARGE Syndrome, please visit www.chargesyndrome.org.

Today Houston Moms Blog is dedicated to spreading awareness about birth defects, and Kalob’s story is just one of many that we plan to share with all of you.  Please join us as real local moms open up and tell the stories of their little miracles all throughout the day.  Our hope is that we can open the eyes and open the hearts of the moms in our community and that our little fighters will become the brave faces of birth defects here in Houston.  To read more, please click here.

BioAbout Amanda P.

Amanda is a wife and stay at home mom to her precious son Kalob.  Together they live just south of Houston.

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19 Responses to CHARGED for the New Year {Birth Defect Awareness}

  1. Tiffanie V
    Tiffanie V January 27, 2014 at 4:48 pm #

    What a beautiful picture of your family! Kalob is an adorable (and obviously) very strong little boy. Thank you for sharing your story with us today.

    • Amanda January 27, 2014 at 8:45 pm #

      Thank you!

      • Dawn Burke February 1, 2014 at 10:08 am #

        Amanda thank you so much for sharing Kalob story

        This is Ava Jolene Schwamberger Grandma – Brian and Starlette – Mom

        You and your husband are great parents and both are BLESS

        • Amanda February 1, 2014 at 9:30 pm #

          Thank you.

  2. Lindsey Matthews January 27, 2014 at 5:26 pm #

    Y’all are absolutely the most adorable family! Kalob is soooooo precious!!! He will be your light and teach you new things each and everyday. Y’all are truly blessed! Continue to share your story to inspire others. Thank you for sharing!

    • Amanda January 27, 2014 at 8:46 pm #

      Thank you!

  3. Jana
    Jana January 27, 2014 at 8:45 pm #

    Thanks for sharing! I love the last picture of your family! He is precious!

    • Amanda February 1, 2014 at 9:30 pm #

      Thank you!

  4. Meg O. January 28, 2014 at 1:26 pm #

    Thank you so much for sharing your story with us! Kalob is quite a fighter and you are one strong mama!

    • Amanda February 1, 2014 at 9:31 pm #

      Thank you!

  5. Michelle Wagner January 29, 2014 at 4:44 am #

    Amanda

    Thanks for sharing this story, you, Daniel, Kalob are simply an amazing family. So honored to get to know your family and precious, Kalob. Charge on for Kalob

    • Amanda February 1, 2014 at 9:31 pm #

      Thank you!

  6. Michelle Wagner January 29, 2014 at 4:46 am #

    Thanks for sharing your story. You and your family are so amazing. I am so honored to get to know you all and precious, Kalob. Charge on for Kalob!! 🙂

    • Amanda February 1, 2014 at 9:31 pm #

      Thank you!

  7. Margaret P. February 4, 2014 at 7:32 am #

    Wow! What a beautiful story of love. : )

  8. Lisha January 8, 2015 at 9:26 pm #

    I am the mom of a fellow CHARGEr. Thank you for sharing your story. what a privilege it is to raise such an amazing little child!!

  9. Natalie January 13, 2015 at 7:42 pm #

    Amanda, We as well have a Charge baby with no warning. I love reading other families story’s with our same struggle/miracle. The doctors call them “defects”, I call them “challenges”. It’s absolutely incredible to witness what these little warriors go through without a second blink. Aleksandr “Alek” just turned one on Thanksgiving 2014. He spent the first 7 months of his life at Mott Children’s hospital U of M Ann Arbor Michigan. While there he as well went through many surgeries from G Tube, Tracheotomy, same bilateral cleft lip and palate repair, open heart AVSD repair and a few smaller ones. Since we’ve been home, Aleksandr is now in the 50% tile on height and weight. He is making progress everyday! I’m proud of my son, and I’m proud to be a CHARGE mom. It takes a strong family to raise a child/children with special needs. Keep up the good work, he looks amazing <3

  10. Kerri C. January 13, 2015 at 9:01 pm #

    Love it! Great job, friend 🙂

  11. Takrima Sadikot April 28, 2015 at 12:10 pm #

    Dear Amanda,
    Your little one is a brave and resilient boy and ADORABLE! My daughter was also diagnosed with CHARGE syndrome at birth and is 4 months old now. I understand the challenges that we all face and the triumphs that we experience each day as well. Sending strength and affection your way!

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