December 12, 2018
 
 

If you are reading this page, chances are you are an expecting a child with spina bifida.  Many of the parents of SBWNY, Inc. understand what you are going through at this time and we are here when you need us.  However, we also understand that you have many questions, therefore we have compiled some information for you below. 

You may also contact our Parent Advocate, Lori Reid

My doctor mentioned the M.O.M.S. study.  What is the study?  
What can I expect at delivery?
What should I expect to see when I see my child in the NICU?
How long will my baby be in the hospital?
What can I expect from the surgeries?
What kind of support will I receive in the hospital?
When we go home is there any special equipment that I will need?

The most important piece of advice that we can give to you is to learn everything that you can before the arrival of your newborn so that you become your child^s advocate. 
Below are additional websites for more information:

Hydrocephalus Association
Provides support, education, resources and advocacy for families and professionals.  If your child has hydrocephalus, this organization will provide you with excellent fact sheets on the medical implications.

Family Village
A global community that integrates information, resources, and communication opportunities on the Internet for persons with disabilities and their families.

What will the rest of my pregnancy be like?
What doctors should I be contacting?