Friday, February 10, 2012

Connor :: Child with Spina Bifida

Connor Sternberg is a 9 year boy from Bethlehem Twp. PA with a spina bifida lesion located at the L4-L5 level. He and his mom were fortunate and blessed to qualify for experimental fetal surgery for spina bifida. Connor's surgery took place on February 13, 2003 at the Children's Hospital of Philadelphia and was performed by Dr. Adzick and Dr. Sutton's team. Connor was the team's 57th patient and his procedure took place a few days prior to the start of the National Institute of Health's randomized MOMS study.

Because of the experimental nature of the study at that time, Connor's mom was required to live near the hospital on mandatory bed rest for the remaining three months of her pregnancy. This time was made a little easier thanks to the welcoming people at the Philadelphia Ronald McDonald House, the very first house of its kind. Connor was delivered at 37 weeks.

Today, Connor enjoys many activities including soccer, dancing, acting and Cub Scouts. Connor has a slight amount of paralysis on the bottom of one foot and some weakness in the other, but physical therapy in his younger years has helped him figure out how to balance himself well. He occasionally wears ankle-foot orthotics (AFOs) for extra support of his ankles and feet when he has to do a lot of walking. Connor's public school discontinued his physical therapy sessions when he was in first grade.

God has blessed Connor with a huge personality, and the doctors at CHOP have helped give him the opportunity to dance, play soccer and enjoy an active life with friends and three older brothers. Fetal surgery also gave our family a chance to do something proactive for our child. We hope some day this could be the first option presented to parents that get Connor's diagnosis, rather than being encouraged to discontinue a pregnancy. Fetal surgery may not be right for everyone, but our hope is that after learning the real, potential benefits of the procedure, many more kids will get the opportunities Connor has had... just to experience life.

Here's a local PBS-TV story that was done about Connor in 2011:

Thank you for sharing Connor's story Frank! If you or your child has Spina Bifida, and you would like to share your story, please email me at contact (at)!

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