New or Expecting Parent Information and Mentoring

If you are an expectant parent who has been told that your pregnancy is affected by Spina Bifida, we can help you find resources or connect you to people who can share their experience and expertise.

We have parents in our organization who have been there! Please let us help connect you and also check other parents’ stories in our Guide for Expectant and New Parents below. This guide can be downloaded here or mailed to you. You may call or email us at 515-635-1463 or [email protected] for assistance.

If you are a parent of a young child or an adult who has just been diagnosed with Spina Bifida, we have information and resources available for you also.

We know that you are searching for information to help you understand more about your unanticipated diagnosis, and we want you to start in the right place.

Newly Diagnosed?   You are not alone.

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. Many other families have been through this experience and can help you during this time. We will be happy to connect you to a 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.

o   National Resource Center

Our national resource center is a hotline where you can ask questions and get referrals for yourself, your child, or to prepare for your baby’s arrival.

o   Spina Bifida Clinics & Providers

A list of providers and clinics in each state is provided. If you don’t find the information you need here, call the national resource center or your local office.

Iowa and the Midwest

If you live in Iowa, we are here as an affiliated chapter of the Spina Bifida Association to serve you. If you live in a surrounding state, there might be a chapter closer to you that we can help you locate. Please contact us about referrals to local providers. We can also connect you to families in Iowa who have shared your experience. We are here to help and invite you to contact us by either filling out our form or by emailing us at [email protected].

Expectant Parents:

The Spina Bifida Association provides information on 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.

You can access that information here.

What To Do:

The Spina Bifida Association has compiled this list that may be helpful to you at this time of your diagnosis.

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 many Facebook groups, or ask your local Chapter to direct you to their network of parents.