Most of the time, you will learn that your baby has spina bifida before you give birth. Specialists in our Fetal Care Program can:

• Confirm a diagnosis.
• Talk to you about what will happen next.
• Provide treatments and services.

We work with the fetal care team to help you get ready to care for a baby with spina bifida. Once your baby is born, care will transfer from the Fetal Care Program to our team.

If your child is diagnosed with spina bifida after birth, we can help make sure your child’s whole care team is in sync.

We start with an evaluation to understand the care your child needs right away. We also  learn what care they may need as they grow.

Specialists who help with evaluation include:

• Fetal specialists
• Surgeons
• Kidney specialists
• Doctors who specialize in the digestive system (gastroenterologists)

During and after your baby’s evaluation, our CDRC nurse practitioner will:

• Work with you on a care plan for your child.
• Connect your family with the specialists and services that will help your child most.
• Be your family’s main contact when you have questions or concerns.
• Help you coordinate care with your child’s doctor and other providers in your community.

Learn about spina bifida treatment at Doernbecher.

During your child’s first year, we see them once every three months. From ages 1 to 3, we see them every six months. After age 3, many children see us once a year.

Our services to help manage spina bifida include:

Behavioral health: Counseling, social support, help finding resources.

Educational support: Help working with schools and teachers.

Medication management: Help making sure your child has no problems with medication.

Nutritional support: Help for children with Chiari malformation, a complication of spina bifida. These children can have choking and other feeding issues.

Occupational therapy: Help with daily tasks, like taking showers or using household items.

Physical therapy: Helping children learn to move in safe and healthy ways.

Eye care: Spina bifida can lead to trouble with vision. Patients need regular eye exams.

Speech-language therapy: Speech and language delays are common in children with spina bifida.

Toileting support: Many children with spina bifida have trouble peeing and pooping. We can help them gain more control.

Our providers are doctors, nurses and therapists with expertise in:

• Neurosurgery
• Pediatrics
• Urology

Learn more about our team.

Our program cares for children only. When our patients are ready for adult care, we can connect them to a new team of specialists and providers. We aim to make this transition as smooth as possible.