special need highlight: adopting a child with spina bifida

April 22, 2014 Central Nervous System, Family Stories, spina bifida 0 Comments

In 2012 we started our adoption journey. We have four biological children and wanted to add a special needs baby to the mix! It was very difficult for us to go through the medical list of possible special needs, but we left it in God’s hands. When we received our daughter’s file from our agency we immediately fell in love with her.


To us it didn’t even matter what her special needs were, we knew God had handpicked her for us. We were blessed with a daughter with congenital spina bifida. Her file gave us very little information about her medical history. We knew her diagnosis was sacral meningocele and tethered spinal cord. She had surgery at the age of eight weeks old. We researched spina bifida and we knew there were varying degrees. Sacral meningocele is characterized by a meningocele (failure of the backbone to close before birth) in the tailbone area. Tethered spinal cord is when the spinal cord attaches to the spinal column. We wouldn’t know what our daughter’s severity was until “Gotcha Day.”


As we progressed through our adoption we consulted with many doctors. Through updates we saw her grow, sit, and eventually stand on her own. When our “Gotcha Day” finally arrived she was walking! Since we have been home we have been blessed with a wonderful local group of parents of spina bifida children. They have welcomed us with open arms, a wealth of information, and friendships. Our daughter has been evaluated and is healthy and mobile. We are also fortunate enough to have a spina bifida clinic at our local children’s hospital. Our daughter is thriving, strong, brave, so very loved, and a huge blessing!

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Spina Bifida Video

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~ guest Post by Tasha

Waiting Children with Spina Bifida

Arianna, born October 2008, is a cute little girl who was very smiley and happy when staff met her. She loves to dance when she hears music, and enjoys playing outdoors. She brings a lot of joy to her nannies, and when she imitates them they can’t help but kiss her! She is diagnosed with hydrocephalus and post-surgical spina bifida. Though her language was delayed previously, during our recent visit the nannies at the orphanage reported that her mental development is normal and that her motor abilities are also on target. There is a $2000 Promise Child Grant available for families who qualify to assist with this adoption. Contact WACAP for more information. Update: Arianna has a family!


Hi, I’m Landon and I just turned 2! When I was younger, I had a CT scan done of my brain and it shows that I have something called “Limitation missing of occipital bone, including occipital meningocele, including congenital dysplasia.” I am behind my friends in my physical development. I am able to follow toys with my eye sight, turn my head to find noises, and recognize when someone is calling my name! I am listed with Great Wall of China Adoption, contact them for more information.


Lucas is 3 years old. He is part of a new Orphanage Partnership Program in Xinzhou, Shanxi Province, China with Wide Horizons for Children. He was born with Spina Bifida. He had a surgery for this issue in 2012. “Lucas” is a curious little boy who is walking easily loves to ride the push bike and enjoys special attention from the nannies. He working on potty training. Contact his agency for more information.


For more information on beginning the adoption journey, please contact the Advocacy Team.

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