Real Stories from People living with Spina Bifida
Building a Better Roadmap: The Spina Bifida Multi-Site Study
Nancy 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."
Nancy was referred to a high risk obstetrician and the spina bifida clinic at Children’s Hospital of Alabama in Birmingham. At her prenatal consultation in the clinic she went with 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 Children’s Hospital were wonderful, "…but the lack of research when Clark was born meant there were so many ‘don’t knows.’ It would have been so helpful to have a better roadmap based on research. More spina bifida research would give parents definite steps to take at each milestone to ensure the best results for their child. It would also help manage the secondary conditions. 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. There are not enough resources available."
Clark is now twelve years old. He walks with braces. He takes piano lessons and will start guitar lessons soon. He loves watching college football and he’s the assistant coach of his younger brother’s soccer team. 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, "Clark had a shunt put in at two weeks and then a revision at two years, but since then no shunt malfunctions." 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 and the best way to manage it. Everything is so intertwined," Nancy says. "Any time there is an opportunity that is non-invasive for Clark to be involved in the research, we do it because we know that in the long run the research will help us and all the other families affected by spina bifida, as well as those to come. Clark is proud to be part of the research. I know for some families the research 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 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 an increased emotional response, 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 hydrocephalus."
Each year, about 1500 babies are born with spina bifida. Health issues and treatments for people with spina bifida will be different for each person. Some health issues and treatments related to spina bifida include hydrocephalus, tethered cord, limited mobility and physical activity, incontinence, skin sores, and latex allergy. The 2009 estimate of medical costs for the first year of life for a child with spina bifida was $52,415 and the lifetime medical cost was estimated to be $460,923.
NCBDDD began funding data collection from Children’s Hospital of Alabama as part of the Multi-Site Study in 2008. Today there are 17 spina bifida clinics across the country sending their de-identified patient data to NCBDDD for analysis. The clinics use an electronic medical record (EMR) specially designed for spina bifida and developed by NCBDDD and its partner the Spina Bifida Association, to collect information about patients’ clinical experiences. This information includes the type of spina bifida diagnosis, mobility, surgeries, pressure sores, education and employment, and insurance coverage, as well as other clinical information. Using the EMR also guarantees that all clinics in the study provide registry information in the same way, ensuring that NCBDDD has standardized and reliable data for research.
As part of the Nurse First program she’s launched, Nancy gives presentations on spina bifida to nursing students. As both a nurse and a mother of a child with spina bifida she says, "If I talked about spina bifida in depth, and covered all the topics, it would take me six months of continuous talking. So if NCBDDD did research on spina bifida nonstop for the next twenty-five years, there would still be more to know."
NCBDDD is the only organization in the United States designing the infrastructure and conducting the multi-site clinical research to build a better road map for living with spina bifida.
In collaboration with our partners, we are learning which health care services may be most beneficial, with the goals of health and condition self-management, success in developing relationships, and success in learning so that participation in society throughout life can be relevant and meaningful. The first findings from this study will be shared with health care providers and families beginning in 2012.
CDC would like to thank Nancy for sharing her personal story.
Anifa is an 18 month old boy who lives in Nigeria. Anifa was born with spina bifida. Like most children with spina bifida, Anifa has no movement of his legs (he is paralyzed) and he has no bowel and bladder control. He works very hard just trying to crawl on his chest.
Anifa lives with his family in a village where there is no primary health center. His mother does not own a stroller and cannot buy diapers. She has to use leaves and paper to keep him clean. She and her husband are doing everything they can for their child, but without proper care, the reality is that Anifa's future is uncertain.
Anifa had to wait until he was nine months old before he had his first back surgery to close the opening in his spine. Imagine that for nine months his spinal cord was exposed, without protection. In the United States, the first surgery for a baby born with spina bifida usually takes place within the first 24 hours of life to avoid infection, other complications, or death. But Anifa had no choice but to wait.
Anifa will likely face lifelong medical challenges associated with his spina bifida, and the financial and emotional impacts that his family will endure are overwhelming. In the United States, children born with spina bifida often live long and productive lives, even though they face many challenges. But, in many other countries, the outlook for children like Anifa is not as positive.
CDC would like to thank Anifa for sharing her personal story.
If you would like to share your personal story, please contact us at firstname.lastname@example.org
- Centers for Disease Control and Prevention
National Center on Birth Defects and Developmental Disabilities
Division of Birth Defects and Developmental Disabilities
Divison of Human Development and Disability
1600 Clifton Road
Atlanta, GA 30333
TTY: (888) 232-6348
New Hours of Operation