Information for Expectant Parents

Living with Spina Bifida

View the new spina bifida experience video!

 

Find Support

Having support and community resources can help increase your confidence in managing spina bifida, enhance your, your child’s, and your family’s quality of life, and assist you in meeting the needs of all family members. It might be helpful for you to talk with parents who have a child with the same condition. Other parents probably have learned how to manage some of the same concerns you have. Often, they can give advice about good resources for your child’s special needs.

Remember that the choices for one family might not be best for your family, so it’s important to understand all options and discuss them with your doctors.

• The Spina Bifida Association’s website is a great place to connect with other families. Visit this website to find a local chapter near you.
  
  
• The Spina Bifida Association Listservs bring people together online to discuss topics such as parenting a child with spina bifida and growing up with spina bifida.
  
  

• National Resource Center: Get information and find clinics or health care providers who are experts in spina bifida.
  
  

• Preparations Website: Resource about becoming an Adult Living Successfully with Spina Bifida

 

Have a Healthy Pregnancy

During pregnancy, one of the best things you can do for your baby is to get good prenatal (before birth) care. Your doctor will need to closely monitor your baby’s growth and development through ultrasounds. Ultrasounds are a type of picture of the baby in your womb that will give your doctor good views of how your baby is developing. For example, an ultrasound can show if your baby has hydrocephalus, which often is called water on the brain.

It’s important to take good care of yourself during pregnancy by eating the right foods, gaining the proper amount of weight, exercising, and resting.

Learn how to stay healthy during your pregnancy >>

 

Understand Delivery Options and Make Plans

Delivery can be both an exciting and stressful time for any parent to be. This is especially true for parents of a child with special needs. It is important to talk with your doctor about what to expect during delivery.

You also will want to talk with your doctor about your baby’s care after birth. If your baby will be born in a hospital that does not have a neonatal intensive care unit (often called a NICU), talk to your health insurance company about transferring to one. A NICU can provide a high level of specialized care for infants with medical concerns.