If you have just been told that your pregnancy is affected by Spina Bifida, you’re likely searching for information to help you understand more about this unanticipated diagnosis. Below, we’ve provided an important overview of what Spina Bifida is, what we know about its causes, and suggested do’s and don’ts during the first days and weeks after the diagnosis.

What is Spina Bifida?

Spina Bifida, a type of neural tube defect (often seen as NTD), is a complex birth defect that is hard to describe. Spina Bifida is often referred to as the snowflake condition of birth defects because no two people with it are affected in the same way.

Many medical professionals will describe Spina Bifida as a spinal cord injury present at birth. However, the severity of Spina Bifida can vary greatly depending on factors such as the level of the lesion along the spinal cord. It’s important that you speak with a health care professional who is familiar with Spina Bifida so you can learn more about how your baby will be affected. Please review our working list of Spina Bifida clinics and call our National Resource Center if you cannot find one near you.

What causes Spina Bifida?

First off, Spina Bifida diagnosis is not the parent’s fault. Every woman of childbearing age is at risk of having a pregnancy affected by a birth defect. Birth defects can’t be prevented; the risk can only be reduced. While there is no single known cause for Spina Bifida, scientists and doctors believe that it occurs from a complex mix of genetic and environmental factors present very early in the pregnancy (by the fourth week). It’s important to know that neural tube defects like Spina Bifida are not entirely understood, and Spina Bifida is not caused by a parent’s actions.

How common is Spina Bifida?

If you are expecting and just received a diagnosis of Spina Bifida, you are not alone. The Centers for Disease and Control and Prevention estimate there are over 166,000 people in the United States who live with Spina Bifida, which also means there are over 166,000 parents and families who have been in your shoes. The Spina Bifida community is supportive, well connected, and always willing to be of service to each other. When you’re ready, we will help you get in touch with other families or mothers in your area. You can call or email our National Resource Center and let us know you’re an expectant parent looking for resources and connections.

Newly diagnosed do’s and don’ts

Don’t feverishly search for “Spina Bifida” online or on social media. Although many organizations offer valuable resources, there are even more who have out-of-date or inaccurate information.

Do make sure that the information you gather is from a trusted, experienced source, and that you follow the advice of health and medical professionals who are knowledgeable about Spina Bifida. Search our list of clinics and providers, and contact our National Resource Center for more information, including how to connect with parents and caregivers who have been in your shoes.

Don’t exhaust yourself trying to determine exactly what the future holds. A diagnosis of Spina Bifida is a lot to take in. While you can’t help but wonder what having a child with Spina Bifida will be like, it’s important to take one step at a time.

Do speak with other parents and caregivers who have experienced what you are going through. Contact our National Resource Center, visit our Spina Bifida Parents Facebook Group, or ask your local Chapter to direct you to their network of parents.