For people living with spina bifida
Expectant Families
If you just learned your baby has Spina Bifida, we want you to know you are not alone. The Spina Bifida Association is here for you with information and resources. A team of healthcare providers will help and support you in making care decisions. And there’s a vast network of other parents who know what you are going through and are ready to answer questions and give you encouragement.
Information and Resources
We know receiving a Spina Bifida diagnosis can be confusing and scary when you don’t have much information. The following is an overview of what Spina Bifida is, what we know about its causes, and suggested steps during the first days and weeks after a Spina Bifida diagnosis.
- A Guide to Spina Bifida For Expectant and New Parents
- In Spanish – GuÃa de la Espina BÃfida Para Futuros y Nuevos Padres
- Options for Pregnancies Affected by Spina Bifida
- NICU Guide for Parents of Babies with Spina Bifida
- Baby’s First 3 Months
- Video: Parent to Parent Tips – Diagnosis to 3 Months
- Find a Spina Bifida Clinic
- Booklet: Understanding a Spina Bifida Diagnosis
Support
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 others:
- Connect with a Peer Mentor
- Contact the Spina Bifida Resource Center – ¡HABLAMOS ESPAÑOL!
- [email protected]
- 1-800-621-3141, x. 800
- Join a Facebook Community
- Chapters & Connections