What is spina bifida?

Spina bifida is the most common congenital anomaly of the central nervous system in newborns occurring 1 in 3,000 live births.  Spina bifida, which literally means split spine, results when part of the spine does not form properly resulting in a portion of the spinal cord and neural elements being exposed to the amniotic fluid around the developing fetus. Sometimes the exposed neural elements of the spinal cord are covered by a sac, called a myelomeningocele. At other times the neural elements are completely uncovered leading to a myeloschisis. These exposed neural structures lead to progressive and permanent injury along with a loss of cerebral spinal fluid.   Babies born with spina bifida have major disabilities, including paralysis and neurologic disability in the lower limbs correlating with the level of injury to the spinal cord, bowel and bladder dysfunction and a build up of fluid in the brain called hydrocephalus as a result of hindbrain herniation.

What causes spina bifida?

The cause of spina bifida is related to interplay between genetic predisposition and the environment.  Women who have had one child with Spina Bifida have a 4% chance of having another child affected by this disorder in a subsequent pregnancy.

How is spina bifida detected?

During pregnancy spina bifida is typically diagnosed by a screening ultrasound between 16 and 20 weeks gestation. If a birth defect such as spina bifida is suspected, expectant families are referred to a tertiary fetal care center like Midwest Fetal Care Center for additional testing to confirm the diagnosis, educate the family about the diagnosis and work with them on a care plan for mom and baby.  At Midwest Fetal Care Center a comprehensive work up is completed and includes:

  • High-resolution level II US
  • Ultrafast fetal MRI
  • Fetal echocardiogram
  • Amniocentesis
  • Maternal serum alpha fetoprotein (MSAFP) looking for AFP in the maternal blood

How is spina bifida treated?

Midwest Fetal Care Center is the only center in the region specifically designed to care for the most complicated pregnancies, including those involving any kind of birth defect.  Midwest Fetal Care Center and Children’s Minnesota have every treatment option available for the care of patients with spina bifida including prenatal and postnatal surgery.  Patients with spina bifida require closure of the spine followed by a comprehensive and integrated care plan. Our multidisciplinary care team helps patients and families understand completely the diagnosis of spina bifida so that each mother and family can make the best decision possible.

What is prenatal surgery for spina bifida?

Prenatal surgery for spina bifida is a procedure that involves placing the mom and the fetus under general anesthesia so that both can be operated on simultaneously. A lower abdominal incision is made, much like a Cesarean-section (C-section) incision, and with some dissection, the uterus is exposed. After using medications to relax the uterus, the surgical team uses ultrasound imaging to make a safe incision into the uterus, exposing the unborn baby. With the baby’s spine in view, the team closes the skin and special layers of her spinal cord, thereby stopping the devastating injury to the exposed nerves. At the completion of the two-hour surgery, the mother stays in the hospital for 5 days with her unborn baby still inside her womb recovering from the big day. Ideally, babies will stay inside the uterus until 36 weeks of gestation is reached. This is an advanced fetal surgery performed at Midwest Fetal Care Center, something  only a handful of centers in the U.S. perform. The surgery requires a large and skilled clinical team including fetal surgeons, neurosurgeons, maternal fetal medicine specialists, anesthesiologists and more.

Why is prenatal repair for spina bifida recommended for some cases?

Research had demonstrated that although open fetal surgery is not a cure for spina bifida, it can yield significantly better results than traditional postnatal repair. It can dramatically reduce the effects of the condition by reducing the shunt rates related to hydrocephalus by 50%, improve and reverse the hindbrain herniation, improve neurocognitive function and significantly improve unassisted ambulation rates.

When the diagnosis is confirmed, a cross-collaboration of specialists at the Midwest Fetal Care Center meets to review the case and determine the best treatment options for mom and baby, working closely with the family. Not all situations are suitable for prenatal surgery.

What happens to mom and unborn baby after the surgery?

For optimal outcomes, the surgery is usually done within 23 to 26 weeks gestation. Following the surgery, expectant mothers are typically observed in the hospital on bed rest for several days. Most are typically then discharged to continue their pregnancy at home with limited activity and weekly ultrasound appointments, and are followed closely by their clinical team. The goal is for expectant moms to make it to 36 weeks gestation, at which point the baby is delivered via Cesarean-section at Midwest Fetal Care Center where immediate attention can be given to mother and baby by a highly trained, comprehensive multidisciplinary care team.

After birth, the baby is assessed by a variety of specialists such as a neonatologist, orthopedic surgeon, neurosurgeon and urologist, among others. They also get imaging done to further inform their care plan. If the baby makes it to full-term or near full-term they typically can go home about a week after birth.

Choosing the best for your baby and family

Midwest Fetal Care Center has performed the most successful prenatal surgeries for the treatment of spina bifida in the region.   Midwest Fetal Care Center performs more fetal interventions than any other center in the region.  In addition to our highly skilled fetal surgical team, we offer the only center in the region whose sole purpose is the care of the most complicated pregnancies involving the most challenging birth defects at one of the largest Children’s Hospitals and Clinics in the country.  Children’s Minnesota is the largest children’s hospital and clinics system in the region solely dedicated to the care and treatment of children and young adults.