Dear Expectant Parents – When you first learn that your baby has Spina Bifida, you have much to learn and many decisions to make quickly. Receiving a Spina Bifida diagnosis can be confusing and scary when you don’t have much information. At this moment, you may feel overwhelmed with fear, anger, guilt, grief, anxiety or other emotions that often accompany the shock of a diagnosis you were not expecting. Take this journey one step, one day at a time. Ask for, and accept, help. Not every internet search will provide accurate information. Please read the information below and explore the additional resources provided. A 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 condition. Birth conditions 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. To best inform yourself, you will need to see a Spina Bifida expert such as a pediatric neurosurgeon, or visit a maternal fetal center at a children’s hospital to learn as much as possible about your baby’s prognosis and the best options for your baby and family. The Spina Bifida Association of Greater New England can help you to find medical practitioners who have expertise with Spina Bifida. Many other families have been through this experience and can help you during this time. We will be happy to connect you to a trained Parent Mentor who can listen to your concerns and provide non-directive information about their experience of raising a child with Spina Bifida. For more information or to be matched with a Certified Parent Mentor, please complete THIS FORM, or call (888)479-1900.