The surgeons at the Johns Hopkins Center for Fetal Therapy are experts in prenatal myelomeningocele repair.

Myelomeningocele is the most severe form of spina bifida. It occurs when nerves from the spinal cord protrude through the opening in the spine and become exposed to the outside. Myelomeningocele is typically diagnosed in pregnancy during routine ultrasound. Mothers diagnosed during pregnancy may be eligible for fetal surgery to repair the defect before birth and help minimize the condition’s long-term effects.

What is myelomeningocele repair?

Myelomeningocele repair, also known as fetal spina bifida repair, is a surgery to close the spinal defect during pregnancy. It is typically performed between 19 and 26 weeks gestation.

There are various techniques for fetal spina bifida repair. Traditional fetal repair is performed through a large incision in the uterus. Due to the open nature of this surgical approach, it carries maternal risk, including:

• Requiring delivery by cesarean section for the current and all future pregnancies
• Other complications, such as uterine rupture at the site of the scar at any time after surgery

Because of the significant maternal risks of open fetal surgery, our physicians also offer a less invasive technique known as fetoscopic spina bifida repair. During this procedure, we gain access to the uterus using tiny incisions to pass a small camera (fetoscope). This minimally invasive procedure can have many benefits, including:

• Babies may deliver closer to their due dates.
• Mothers have the option of vaginal delivery (for current and future pregnancies).
• There is no known risk of uterine rupture after surgery.

Prenatal repair requires the highest level of care from multiple medical specialties and therefore can only be performed at specialized centers. Members of the multidisciplinary team at the Johns Hopkins Center for Fetal Therapy are leading experts in fetoscopic spina bifida repair and are at the forefront of research on how to make these procedures safer for both mother and baby, and more effective.

What are the benefits of fetal surgery for spina bifida?

The Management of Myelomeningocele Study (MOMS), published in 2011, was the first formalized research trial that compared the outcomes of prenatal surgery (before birth) versus postnatal surgery (after birth). This comprehensive study demonstrated that prenatal surgery for spina bifida has significant benefits, including:

• An over 50 % reduction in the need to perform shunting treatment for hydrocephalus
• An almost tenfold reduction in the development of secondary neurological conditions, such as Chiari malformation type 2, at age 1
• A better level of spinal cord function
• Doubling of the ability to walk without assistance

The MOMS trial established the role that fetal surgery can play in improving the outcomes and quality of life for babies with spina bifida.

Who is eligible for fetal surgery?

Fetal surgery for spina bifida may be a good option for severe myelomeningocele when the requirements below are met:

• The current pregnancy is a singleton pregnancy (one child).
• The mother is between 19 and 26 weeks pregnant.
• The baby does not have additional medical conditions or anatomy concerns (not related to spina bifida).
• The mother does not have major medical conditions.

To determine eligibility, we perform imaging tests (such as ultrasound and MRI) and review the mother’s medical history (including of any prior pregnancies). We then meet with the mother to learn her preferences and recommend the best treatment plan. Our patients meet our fetal surgeons, pediatric neurosurgeons and neonatologists before surgery to become acquainted with their treatment team.

Learn more about our unique approach to spina bifida treatment.

Our Myelomeningocele Repair Outcomes

Johns Hopkins experts have been at the forefront of research on the benefits of prenatal spina bifida repair, and they continue to study and refine surgical techniques to make the procedure safer and more effective.

• Study indicates fetoscopic spina bifida repair carries less obstetric risks than open fetal surgery.
• Study of new technique to improve fetal surgery effectiveness
• Study about the use and potential risks of carbon dioxide gas during fetal surgery.