A Zest for Life: Amerie’s Battle with Spina Bifida

“Miracle of God,” that is the meaning of 3-year-old Amerie’s name. When Amerie’s mom, Vanessa, was 16-weeks pregnant, she received a life-changing diagnosis of her soon-to-be born daughter. While in-utero, Amerie was diagnosed with a severe form of spina bifida called myelomeningocele, a congenital defect that affects the development of the back bones, spinal cord, surrounding nerves and the fluid-filled sac that surrounds the spinal cord.

“Spina bifida is a condition that affects the spine of a developing baby in-utero, which causes the neuralo tube not to close all the way during development,” says one of Amerie’s specialists, Dr. Vineeta Swaroop, Attending Physician, Orthopaedic Surgery. “A sac of fluid, containing part of the spinal cord and nerves, comes from an opening in the baby’s back, and the backbone that protects the spinal cord doesn’t form around the spinal cord as it should. All of this leads to damage in the spinal cord and affects nerves, which can affect how a person goes to the bathroom and lead to a lack of feeling or movement in the legs.”

Two weeks after Amerie was born at Mercy Hospital in Rockford, Ill., she was rushed to Lurie Children’s where she underwent surgery with Dr. Robin Bowman, Director, Multidisciplinary Spina Bifida Center; Co-Director, Fetal Neurosurgery, The Chicago Institute for Fetal Health.

Today, Amerie sees a number of specialists at Lurie Children’s for her spina bifida. “Our team at Lurie Children’s has been our go-to for everything and are there whenever we need them,” says Vanessa. “We aren’t just a number, but everyone knows Amerie by name. I never have to explain her conditions all over again, from scheduling to coordination, nurses and doctors. A happy child is a happy mommy.”

“Lurie Children’s has one of the largest multidisciplinary spina bifida centers in the country,” says Dr. Swaroop. “Over 700 patients are seen annually. There are specialists from neurosurgery, urology, orthopedic surgery and physical medicine and rehabilitation in clinic each week. The program is even a part of the National Spina Bifida Patient Registry, which is funded by the Centers for Disease Control (CDC) to improve care quality for patients and advance research.”

Amerie proves to fight against all odds and does not let spina bifida hold her back. Often described as empathetic and an old soul, Amerie puts others before herself and sparkles with cheer, even during difficult days. She also loves going to preschool, reading, giving hugs and bossing her four older siblings around.

She exemplifies resilience, positive energy and a thirst for living life to fullest, even as a toddler. These qualities all make Amerie the person she is today as she lives up to her name. 

"She has the ability to see everything in a different light and is strong and fearless, especially during her physical therapy sessions,” says Vanessa. “Unlike Amerie, our legs might work, but we don’t have the passion or love for life like her.”    

Learn more about Lurie Children's Spina Bifida Center

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