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I made up my mind…I’m keepin’ my baby

July 14, 2010

As if cancer treatments and a pregnancy weren’t enough excitement already, my husband and I received some disappointing news at my 16-week ultrasound in July of 2008. The doctor pointed out that there appeared to be a large opening in our baby’s spine…spina bifida, he called it. They could confirm this diagnosis through an amniocentesis, but the defect appeared to be fairly pronounced. But ultrasounds can be wrong, we thought. The test will come back negative and everything will be fine.

Only, that’s not what happened. The test came back positive. Obviously, everyone expecting a baby wants to hear that their baby has ten fingers and ten toes, a normal heartbeat, etc. and we were no different. We went home that day and started doing research on spina bifida. The internet, as amazing as it may be, can really scare the crap out of you… if you let it. Most of the information we found was outdated and did not take into account the early intervention programs that now exist to increase the quality of life for children born with spina bifida. At first, we worried that our daughter would be wheelchair bound and intellectually challenged. Everything we read online seemed so hopeless. We wondered if bringing a baby into the world with a known birth defect was the best thing to do. We struggled with negative thoughts and worst case scenarios. We sought to understand why this was happening after everything we’d been through.

And then, I discovered what would become my most valuable resource in facing the challenges of spina bifida. I located a group of moms online at the babycenter.com web site that all had babies/toddlers with spina bifida. I spent hours reading posts about different issues and posted questions as well. They gave me real-world advice and hope for the unexpected journey I was about to embark on. They helped me to understand that special needs children require special parents, as if we were hand picked by God to look after this wonderful little girl that became my daughter. They gave me the insight to realize that I would love my daughter, spina bifida and all, no matter what the future would hold. Now over 700 members strong and counting, these moms continue to amaze me with their strength, compassion and love for their little ones. Special shout outs to Colleen and Leigh for starting and managing this group. You have enriched the lives of so many parents. I appreciate greatly the contributions you make to moms in the spina bifida community.

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2 comments

  1. You don’t even know how much that means to me. 🙂 This resource wasn’t there when I was pregnant with Nate, and I’m so glad we can be there for you now. You’re going to do great, and so is your little girl!


    • I am forever thankful to you for starting the group! I don’t post as much as I would like, but I wanted you to know how much it has helped me and my family. I can always rely on you all for insight! Thanks for visiting!



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