How do doctors diagnose spinal dysraphism?

At around 15 weeks gestation, a blood test measures the levels of alpha-fetoprotein (AFP) (a protein made by your baby’s developing liver). If the AFP levels are higher than usual, your doctor may suggest more tests to check for spinal dysraphism. Tests might include an amniocentesis (when doctors check amniotic fluid, or the fluid surrounding your baby during pregnancy, for certain medical conditions) and an ultrasound.

If your baby is diagnosed with a meningocele or myelomeningocele, doctors will also recommend a fetal magnetic resonance imaging (MRI, or an imaging test that gives very clear pictures of the body).

If spinal dysraphism runs in your family, doctors will also recommend genetic testing.

If my baby is diagnosed with spinal dysraphism, what are the next steps?

  1. The Fetal Care nurse coordinator at MGHfC will contact you to coordinate and schedule all consults and imaging tests that your maternal fetal medicine doctor and OB/GYN recommend.
  2. Your fetal echocardiogram, fetal MRI and consults with Pediatric Cardiology, Pediatric Neurology, Pediatric Neurosurgery and Pediatric Physiatry will be scheduled on the same day. At these consults, you will learn about your baby’s condition and which types of surgery are necessary. You will also learn about any medical issues your baby may have after delivery.
  3. After delivery, your baby will be closely monitored and spend time in the Neonatal Intensive Care Unit (NICU).

How does spinal dysraphism affect the birth of my baby?

Depending on the size and location of the spinal dysraphism, you might be able to deliver your baby vaginally. It is important to deliver your baby at a hospital with a NICU and pediatric neurosurgeons, such as MGHfC. This ensures that your baby receives the best care from all necessary specialists.

In other cases, a cesarean section (C-section) is the safest way for your baby to be born. The care team will talk with you about the safest way to deliver your baby.

How do doctors treat spinal dysraphism?

Treatment depends on the type of spinal dysraphism your baby has and if they have other medical conditions. Pediatric specialists from across MGHfC will care for all your baby’s medical, emotional and developmental needs.

If your baby has a myelomeningocele, right after birth, a provider will check the spinal dysraphism and cover it with a soft dressing (bandage). Typically, babies with myelomeningocele have surgery within 3 days (72 hours) after birth. After surgery, the care team will evaluate your baby and make recommendations for future care. The Fetal Care program coordinator will ensure that your baby has the proper follow-up care going forward. This includes making sure your baby is connected to specialists and has follow-up visits scheduled with the appropriate providers.

Did you know…?

Before your baby is born, you can schedule a tour of the NICU. Ask the Fetal Care nurse coordinator how to schedule the tour by calling 857-233-CARE (2273).

Rev. 2/2021. MassGeneral Hospital for Children and Massachusetts General Hospital do not endorse any of the brands listed on this handout. This handout is intended to provide health information so that you can be better informed. It is not a substitute for medical advice and should not be used to treatment of any medical conditions.