Expectant and New Parents – Spina Bifida Assoc of NYS

Newly Diagnosed?

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.

National Spina Bifida Association

Check out our National Spina Bifida Association is a resource where you can ask questions and get referrals for yourself, your child, or to prepare for your baby’s arrival. Click Here.

Guidelines for Care of People with Spina Bifida. Click Here.

Expectant Parents Resources. Click Here.

New and Expectant Parent Guidelines

This resource contains information for parents who have received a diagnosis or parents who have recently had a baby with Spina Bifida. Click Here.

For a more condensed version of the packet, please review our Expectant and New Parent Brochure by clicking here.

NYS Spina Bifida Clinics and Providers

Check out our list of providers who have experience working with Individuals with Spina Bifida and NYS Spina Bifida clinics. Click Here.

Center for Disease Control

For the CDC’s information on Spina Bifida, Click Here.

Additional Resources

Understanding a Spina Bifida Diagnosis — booklet developed by Lettercase at the National Center for Prenatal and Postnatal Resources: Click Here.
American Academy of Pediatrics: Click Here.
National Maternal Mental Health 24/7 Hotline: Click Here.

It is very important that you feel supported by others in the community and hear these stories of

individuals living with Spina Bifida thriving in their environments.

Yes, having Spina Bifida isn't easy. I’ve had to learn to navigate the halls of a big public school, have multiple jobs, and learn to drive, and I’m currently making my way through a Community College where I study Graphic Design. While this may seem easy to some people, it can be hard. For example, coming from a big family who loves sports, it can be hard to watch my siblings skating in a typical way when I have to use a hockey sled because of my disability and lack of balance. While it can be hard to watch from the sidelines, there are so many hobbies to participate in that make life more fulfilling. I want every expectant mother to know that their child with Spina Bifida can complete tasks such as driving or going to college due to the adaptive changes or resources that are becoming available.

People with Spina Bifida can and do live full vibrant lives but we must have access to jobs, housing, transportation and other vital services that need to work together in order for us to live those lives. want the younger generation of people with Spina Bifida to know its ok to ask for and accept help. You don't have to do it all on your own and you are not alone.

I am strong, courageous, and kind. It is important to always do your best and not give up no matter the circumstance. I am hoping that my personal motto will be able to help others; No Disability Can Stop My Ability!

Having a child with Spina Bifida has taught me that it's not going to be easy and it will take a toll on you at times, but the good far outweighs the bad! And the personality it has given my son is amazing! "There's always gonna be another mountain I'm always gonna wanna make it move Always gonna be an uphill battle Sometimes I'm gonna have to lose Ain't about how fast I get there Ain't about what's waiting on the other side It's the climb." -The Climb, Miley Cyrus

David is energetic, happy, and loving. Having a child with Spina Bifida has taught us patience, understanding, perseverance, and tenacity. He makes us smile every day with his energy and smiles. We are grateful and thankful for the support we have with family, friends, and the Spina Bifida community. We aren't extraordinary people but ordinary people put in extraordinary circumstances.

Expectant & New Parents

Newly Diagnosed?

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