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Spina Bifida: Nancy’s Story

Spina bifida is one of the most common permanently disabling birth defects in the United States. Spina bifida happens when the spine and back bones of a fetus (a baby still in the mother's womb) do not close all the way. A sac of fluid comes through an opening in the baby's back. Much of the time, part of the spinal cord is in this sac, and it is damaged. This occurs within the first few weeks of pregnancy, often before a woman knows she is pregnant.

Nancy's Story

Photo: Nancy and her son, ClarkNancy went for her five-month ultrasound to find out whether she was expecting a boy or a girl. "They kept repeating the ultrasound over and over. I knew from a mother's instinct, and from being a nurse, that something was wrong. The doctor walked in and said your son's going to have spina bifida. I had briefly studied spina bifida in nursing school, only hearing about the worst-case scenarios, so immediately I thought that's what my child would be facing."

At her prenatal consultation in the spina bifida clinic, she had several questions about her son's prognosis. "The pediatric neurosurgeon told me to put away all my questions and said I don't know, I don't know." Nancy and her husband were very scared and shaken.

Nancy shares that the staff at the hospital where she gave birth were wonderful, "…but the lack of research when Clark was born meant there were so many ‘don't knows.' Every issue is just as important as the next. Some families might deal more with neurological symptoms, while others struggle daily with bowel and bladder concerns. Nutrition and physical activity are also important when it comes to living with the condition. Clark is ambulatory and goes to the gym, but it's still very difficult for him to get his heart rate up. I'm constantly watching his weight. For us, the closest accessible sports are an hour and fifteen minutes away."

Photo: Clark holding soccer ballClark is now twelve years old. He walks with braces. He takes piano lessons and will start guitar lessons soon. He's the assistant coach of his younger brother's soccer team and he likes to hang out with his friends. Although spina bifida impacts his life every day, Clark does not let it define who he is. Nancy continues, "At two weeks, Clark had a shunt put in to relieve pressure around his brain." She crosses her fingers and knocks on wood when she talks about how lucky they've been because shunt problems are common with spina bifida.

"We want there to be more knowledge of all aspects of spina bifida," Nancy says. "I know for some families the information they'd like to have is on the neurological side because they're dealing with frequent shunt revisions, or their child has symptoms from tethered spinal cord syndrome. Also every parent I've spoken with who has a child that's a little bit older says their child seems to show other neurological symptoms like wearing their emotions on their sleeve, or a lack of motivation. Without more research in this area, it's difficult to say if these behaviors are related to puberty, depression, or perhaps the effects of excess fluid around the brain."

CDC would like to thank Nancy and her son Clark for sharing this personal story.

What is spina bifida?

Each year about 1,500 babies are born with spina bifida. Not all people born with spina bifida have the same needs, so treatment will be different for each person. Health issues can range from mild to severe.  The severity depends on the size and location of the opening in the spine, and whether part of the spinal cord and nerves are affected. Women who are pregnant, or could get pregnant, may be able to help prevent their babies from being born with spina bifida by taking the vitamin folic acid.

Most children born with spina bifida live full lives, though they often have lifelong disabilities and need many surgeries. Some children may have problems such as bowel and bladder management, mobility, and learning challenges, while other children do not. With the right care, most of these children can lead independent and productive lives.

Spina bifida is a complex, disabling condition that has a tremendous emotional and financial impact on the entire family.

  • One parent may have to stop working outside the home to become a full-time caregiver.
  • Siblings may experience a change in relationships within the family. 
  • Families may have difficulty finding health care providers in their area who treat patients with spina bifida.
  • Families may have significant costs associated with frequent surgeries, hospitalizations, and educational resources.

What is CDC doing?

The Centers for Disease Control and Prevention (CDC) focuses on addressing mental and physical health, encouraging independence, and achieving a satisfying life for children and adults with spina bifida. Through our research, we are learning which health care services may be most beneficial for people with spina bifida.

One of the spina bifida projects funded and managed by CDC is the National Spina Bifida Patient Registry. Medical care for patients with spina bifida varies throughout the country. This program collects and analyzes anonymous patient information from 17 spina bifida clinics across the country to identify the best patient care.  In collaboration with our nonprofit partners, we will share these best practices with all health care providers who serve the spina bifida community, working towards a national standard of care.

 

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