Spina Bifida Program

Spina Bifida (also known as myelomeningocele or lower spinal cord defect) is a birth defect that occurs when the bones of the spine do not form properly around part of the baby's spinal cord.  In the US about 1,500 babies each year are diagnosed with spina bifida.

Spina Bifida Care at UVM Children's Hospital

At the University of Vermont Children's Hospital, we offer a family-centered approach with a team of experts who work closely with you to design a treatment plan specific to you and your family's needs. We look forward to working with you and your family to provide the best care possible.

Personalized Care

Your care will be led by a supportive and empathetic team of experts that will help guide you through every aspect of your child's care.

Experienced, Trusted Expertise
Your team consists of dedicated groups who are experts in their field and offer the latest advancements in technology. Our team of experts includes the following services:

• Pediatric Nephrology
• Pediatric Neurosurgery
• Pediatric Urology
• Pediatric Orthopedics
• Pediatric Physiatry
• Developmental Pediatrics
• Family Representatives

Collaborative Approach
We work collaboratively with you, your family, your child's primary care provider (PCP) and other health care team members, to ensure that we are meeting all your child's health care needs.

Spina Bifida Program: What to Expect

The Spina Bifida Program is coordinated through the Pediatric Nephrology division office at 802-847-8840. We schedule visits to the Spina Bifida Clinic every 6-12 months where you will visit with multiple team members, set goals for your child and family, and meet other families who are coming to that clinic.

If your initial visit is a prenatal visit:

In order to get to know you and start a plan together, we prefer to meet with families before the baby is born to prepare for care at delivery and in the newborn period. 

Initial prenatal visits are in the Children's Specialty Center where you will meet with our physician coordinator, our nurse coordinators and our pediatric neurosurgeon.

We offer a consultation with one of our Neonatologists, so that you can learn more about the baby's care in the immediate hours and days after delivery.  Our perinatal team is well prepared to provide excellent care for you and your baby in our High Risk OB Service, our Delivery Room, Neonatal Intensive Care Unit (NICU) and Mother-Baby Unit.

If your initial visit is after the baby has been born, or if your child is older at the time of the first visit:

In order to provide the best care, we will ask that you assist us in obtaining the following:

• Records of all of his or her previous treatment, including the names of the hospitals and physicians involved, the operative notes for all surgical procedures, hospital and office records
• Any imaging (X-rays, ultrasounds, CT scans, MRIs). Please send ir bring all imaging to us on a CD or other electronic medium so that we can review it ourselves and add it to our imaging files here

What to bring with you on the day of the first visit:

• All of the above records and imaging (unless you called ahead and they are already in our office)
• Your questions and concerns  and how we can best help you as part of your child's health care team
• All of your child's current medications (It is best to bring the actual bedications for review.)

How often will your child will be seen in the Spina Bifida clinic?
We recommend each child be seen in our clinic twice a year. During those visits, you will meet with our specialty teams, as well as with other families who are attending at that time. Our physician teams will tailor a comprehensive plan for you and your family so that your needs are met regularly.

Spina Bifida: What You Need to Know

What is Spina Bifida?

Spina Bifida is an abnormality in the way the lower spine forms early in fetal life. This leaves the bones of the lower spinal column open, and the lower end of the spinal cord and its coverings protruding. From the outside, this looks like a patch of reddened skin just above the buttocks, often with a lump of tissue (which is the spinal cord and its coverings). Other names for this condition include “myelomeningocele” or “lower spinal cord defect.”

Prevention
Though the causes of this birth defect are unknown, and sometimes this occurs in spite of all efforts, there are measures that have been shown to help decrease the risk of spina bifida:

• Get plenty of folic acid prior to and during pregnancy.
• Avoid drinking alcohol while pregnant.
• Avoid saunas or hot tubs and treat high fevers right away.

How is Spina Bifida Diagnosed and Treated?

During pregnancy, a blood test and ultrasound and/or an amniocentesis can be used to check for signs of spina bifida and other birth defects. If the baby is suspected of having a birth defect the doctor may perform an X-ray, MRI or CT Scan to see how severe the defect is.

If your child is diagnosed with this birth defect, the first need is to close the spinal cord. Sometimes this can be done before the baby is born, but often is done in the first 1-2 days after delivery.

At the UVM Children's Hospital your baby will be delivered in a setting where there is excellent neonatal, obstetrical and neurosurgical care ready to take care of all your baby's needs.

Once the baby is delivered, our team of experts (including our pediatric neurosurgeon and pediatric urologist) will assess the baby' brain fluids and bladder to make sure they are draining properly. From there our specialists will work with you and your baby to help him or her live life to the fullest.

For more information call us at 802-847-8840 and let us know you're calling for the Spina Bifida clinic.

Other Resources

• Center for Disease Control and Prevention - Spina Bifida
• National Institute of Neurological Disorders and Stroke - Spina Bifida Fact Sheet
• Spina Bifida Association of America
• Spina Bifida Association of Greater New England