Join the Community

If you recently received a diagnosis for your unborn child, first, "Congratulations on your pregnancy!"  Your pregnancy may have just gone from exciting and hopeful to stressful and scary.  Please take hope in the fact that your baby will still be amazing.  There is support for you as you consider which option is best for you and your baby, moving forward.  There are two Facebook communities specifically designed to support you on your journey and celebrate with you along the way.  


First Layer of Support
Expecting & Considering Fetal Surgery for Spina Bifida: A closed support group for those recently diagnosed and considering fetal surgery for spina bifida.  Families who have undergone fetal surgery (and a few who chose against the fetal surgery option or were not deemed medical candidates for it) are available in this group to offer support and answer questions.  




Second Layer of Support
Spina Bifida Fetal Surgery: A secret support group for those that have already received fetal surgery for spina bifida.  Generally, once families undergo fetal surgery for spina bifida and give birth to their child, they choose to move into this group to gain access to larger group of families and an extensive set of health and life experiences.  Generally, at this point, with the exception of mentor moms and dads (see above) are removed from the Expecting & Considering group.  To join, parents must first message the "Fetal-Surgery Spina Bifida" Facebook profile (available by clicking this section title) with your information. 


Additional Support

There are many great, supportive online communities and resources from which you can gain positive, real-world support from parents and caregivers for those with spina bifida, adults with spina bifida, and medical professionals who work with people who have spina bifida.  Some are public websites.  Some are forums.  Some are closed groups that require identification and a connection to the spina bifida community before joining to safeguard their members.  A few include:

Also, click "In Your State" in the navigation ribbon to see supports in your state/region.