Thursday, May 17, 2012

Autumn :: Child with Spina Bifida

Autumn was diagnosed with Spina Bifida when I was 20 weeks pregnant. Her level is L4-L5, she has a VP shunt, Arnold Chiari II Malformation, central apnea, tracheotomy, and a gastro-button. I am actually nervous to share Autumn's story to new parents learning their child has SB because of all the "complications" that come with her story.

She's in the rare 5% that has severe ACll issues. We did not know this until after her birth. We figured we would have the typical hospital stay with her back closure & shunt & then home to do all the things that come along with SB like cathing, therapy, etc. During her first week of life she would stop breathing & we learned she would need a trach & ventilator to keep her alive & get her home. After a 4 month hosptal stay, she was finally able to come home. Even though my fears of the "worst case scenerio" came true they aren't what I expected. I have a 3 year old who can not walk or talk, can't eat by mouth, needs a breathing machine to keep her alive while she sleeps, & is developmentally like a 12 month old. This may sound sad or depressing but it's the COMPLETE opposite. She may do things differently than the average child but she finds a way to communicate to us without words and seems more "normal" than not. Autumn can army crawl all over the place, he uses her wheelchair to get into things and pop wheelies. She LOVES to watch TV & look through books. My daughter is my hero. She's my inspiration. She has spunk personality. She is strong-willed & stubborn just like her momma. She is the HAPPIEST little girl & you will rarely EVER see her cry. My worst fears about SB turned out to be my greatest blessing. Autumn's life is proof that the worst case scenerios drs give turns out to be not so bad afterall. ;)

To read more about Autumn, visit their family blog at

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