Information for New and expecting parents

Understanding the Diagnosis

If you have just been told your baby has Spina Bifida, or if you’ve recently learned your baby has Spina Bifida, the first thing we want you to know is that you are not alone.

If you are feeling frustrated, overwhelmed, confused, conflicted – these feelings are normal, and you’re allowed to experience all of these without judgment. There is a strong and growing network of people with Spina Bifida, other parents and families, health professionals, and Spina Bifida clinics that can provide you with information and resources for wherever you are on your journey.

Resources

We know receiving a Spina Bifida diagnosis can be confusing and scary when you don’t have much information. Many others have been through this experience and can help you during this time. The Spina Bifida Association can connect you with experienced parents who have been trained to support you with information, resources, and encouragement as you make decisions and navigate next steps.

There are different ways to connect with a mentor: