Breaking the limits of spina bifida: Abigail's story

by Spina Bifida Association

Spina bifida might be the most common permanently disabling birth defect in the United States, but Abigail Branson has grown up determined not to let it slow her down in life.

Abigail was born with a congenital disorder called spina bifida, a neural tube defect which is caused by the incomplete closing of the spinal cord during the first few weeks of pregnancy. Abigail's spinal cord and nerves were severely damaged when she was born and even after many surgeries, she was unable to use her legs.

Despite her permanent inability to walk, Abigail has set her goals high in life. She refuses to see herself any differently from others. "We only have one difference – I can't walk and they can walk," she says.

As an avid swimmer, Abigail takes to the pool because that is where she feels most like everyone else. She swims competitively and says, "butterfly is my favorite stroke because it's the hardest."

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Qualifying for the National Junior Disability Championship in Tampa, Florida, Abigail was able to compete against hundreds of other athletes with various disabilities. She swam in four events, took first place in all, and even broke the national record in the 25 meter butterfly event. She was pleased with her first place finishes, however she was most impressed by the teammates that she met.

"I was really inspired by them because they showed me a lot of new ways to get around." She returned home determined to learn how to walk with crutches instead of a walker and she is now getting around more easily.

Abigail attributes her positive attitude to her family. Her siblings push her to be her best and refuse to let others treat her differently. Her older sister often tells people, "she can do it herself, she's fine" when she sees people trying to help her with tasks of which she knows Abigail is capable.

Her parents are active advocates for those affected with spina bifida in Washington, D.C., where Abigail always accompanies her mom on trips to help spread the word. Abigail's mom says, "there are 166,000 Americans living with spina bifida and if we can help more than one of them, then we are doing a good job."

The truth is that spina bifida affects 1 in 2,858 pregnancies each year in the U.S. The severity of the condition can vary, but most often, the child is born with a permanent disability much like Abigail.

Folic acid plays a critical role in the formation of the neural tube during the first weeks of pregnancy and it's recommended that all women considering pregnancy take a daily dose of 400 micrograms prior to conception. However, scientists have recently discovered that small differences in an individuals DNA may play a role in how their body processes folic acid, potentially impacting their risk level for having a pregnancy affected by spina bifida.

In spite of the physical setbacks of a condition like spina bifida, Abigail has her sights set high in the future. Her next goal is to compete in the Paralympics and "show other young people that have wheelchairs that you can do anything if you work hard."

Medical references:
- American College of Obstetricians and Gynecologists (ACOG). Neural tube defects. Washington (DC): American College of Obstetricians and Gynecologists (ACOG); 2003 Jul. 11 p. (ACOG practice bulletin; no. 44).
- Danielson M, Thibadeau J, Devine W, and Correa, I. Population Estimate of People Living with Spina Bifida in the United States, 2004. Abstract presented at First World Congress on Spina Bifida Research and Care, March 2012. Note: Upon further review of data and panel approval, CDC researchers revised the estimate presented in this abstract downward to 166,000.
- De-Regil LM, Fernández-Gaxiola AC, Dowswell T, Peña-Rosas JP. Effects and safety of periconceptional folate supplementation for preventing birth defects. Cochrane Database Syst Rev 2010;CD007950.
- Parker SE, Mai, CT, Canfield MA et al. 2010. Updated National Birth Prevalence Estimates for Selected Birth Defects in US 2004-2006. Birth Defects