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Fetal Surgery for Spina Bifida

Treating spina bifida

 

All babies born with spina bifida require surgery to cover the spinal cord. The lining of the spinal cord (the meninges), muscle and skin are repaired over the spinal cord, usually in the first day after birth. This is to both repair the condition and to decrease the risk of infection to the spinal cord and brain.

Surgery after birth 


The most common form of care for MMC is surgery after the baby is born — ideally at a facility that has the expertise, clinic and nursing and doctor specialists who can repair and care for babies with MMC.

Most centers with spina bifida clinics will perform surgery the first day after the baby is born. The baby receives follow-up care during and after leaving the hospital to watch for hydrocephalus (an increase in the fluid of the brain). This is considered the standard of care.

Fetal surgery before birth


A newer treatment for MMC is performing the same repair used with a newborn baby but during the pregnancy. This is called fetal myelomeningocele repair (fMMC).


Women who are considering fMMC treatment begin by consulting at a center that can perform the procedure. This consultation with specialist nurses and doctors may take a day or two, plus travel time if the facility isn’t nearby.


During this evaluation, the mom-to-be will undergo:

  • an ultrasound

  • an MRI

  • an echocardiogram (special ultrasound to evaluate the baby’s heart)

A group of specialists (called a multidisciplinary or integrative consult) will meet with the mom-to-be and her family to educate and inform them of the standard of care: surgical treatment of the new baby after birth or this newer therapy, fMMC repair during pregnancy.

If both mom and baby are candidates, we offer repair between 24-26 weeks of pregnancy. The fMMC repair surgery is almost identical to the repair done with a newborn baby. The difference is, it happens prior to the baby’s birth.

The mother’s uterus is opened similar to a cesarean section, and the baby is moved into the opening in the mother’s uterus so doctors can see the MMC. The neurosurgeon then repairs closes the spine while the baby still in the uterus.

The neurosurgical part of the procedure is very brief. The vast majority of the surgery is spent slowly opening and closing the uterus, so that mom and baby stay safe.

After surgery


After the baby’s surgery is completed, the uterus is closed and the pregnancy continues.

After surgery, the mother needs to stay in the hospital for 4-5 days, so we can monitor her for preterm labor. After being discharged from the hospital, she can return home if she lives within a 50-mile radius and finish her recovery for another two weeks. The mother will need to stay in the Kansas City area if she lives more than 50 miles away. It is imperative another adult is with her during this time because if a complication were to occur, someone has to help get that mom to the center to be evaluated. After that two-week period, the mother will visit her OB every week for an ultrasound to make sure there are no signs of preterm labor.

Most moms will give birth between 33-34 weeks, but the goal is for the pregnancy to be continue until 37 weeks and deliver the baby via C-section at a hospital with newborn specialists, neurosurgeons, and a spina bifida clinic.

Qualifying for fetal surgery

 

First, we need know the genetic structure of the baby before we can consider performing the prenatal repair. An amniocentesis will determine if the baby in the womb has normal genes. If the baby has no other issues outside of spina bifida than the child would be considered for surgery before birth.

However, the mother also has to be a healthy person. To be a candidate for surgery, mom can’t have insulin dependent diabetes, have chronic hypertension, she can't have the AIDS virus or hepatitis viruses. She also can’t have had a pre-term birth in the past, because undergoing surgery puts her at pre-term risk. If she’s already had one baby early, she’s more than likely to have this baby early too.

Benefits of prenatal repair

 

Families want to understand the benefits of prenatal repair.

The MOMS Trial helped answer that question as well. While there is no cure for spina bifida, repairing the spine in the womb can minimize the spinal defect.

Prenatal surgery also lowers the risk for a shunt. For babies that have surgery after birth, 82 percent will require a shunt to be placed in the brain. This is due to the formation of water on the brain or hydrocephalus. The shunt drains the fluid from the baby’s brain to the intestines.

Because a shunt is a piece of hardware, it can clog, get infected or break, and a typical child may have one or two shunt repairs before they’re an adult.

For babies that undergo prenatal repair, only 40 percent would need a shunt placement in their first year of life.

Reducing the need for a shunt improves the spinal cord function. The MOMS Trial showed babies that underwent prenatal repair had more mobility, move movement in the legs and better neurologic outcomes.

Another benefit to closing the spina bifida prenatally is the child is healed and sealed at birth. The mother can bond, hold and nurse her child without worrying about a fresh incision she can’t put pressure on. Or worst case, the mother has to worry about the incision getting infected.

Risks that must be considered


Risks to both the baby and the mother must be considered.

Risks to the baby

The baby’s risks are centered on premature delivery.  The fetal MMC repair has an average delivery at 33 – 34 weeks. Babies who have repair after birth are born at 38 weeks on average. The delivery of fetal MMC babies before 30 weeks decreases the chances of the benefits from the surgery during pregnancy. 

Mothers who choose the fetal MMC repair will experience the bag of water breaking before delivery almost half the time. If the bag of water breaks, the mother must be admitted to the hospital. Importantly, if the water breaks, not all women have to be delivered. Most often, at less than 34 weeks pregnancy, if the mother and fetus are stable, the pregnancy will continue. 

About 4 out of 10 women will have preterm labor. When or if this occurs, she must seek medical care and most often be admitted to the hospital. Again, the incision on the mother’s uterus should not have labor pressures. Although rare, the incision could open – referred to as uterine rupture. This rare moment is an emergency for both mother and baby in the womb. 

Risks to the mom

The mothers’ risks are those of premature labor, the bag of water breaking and the possibility of the uterus’ incision opening with labor which may have emergency surgery, bleeding and infection risks. The mothers’ risks most often have her admitted to the hospital. 


Fetoscopic repair

Fetoscopic repair is another method being performed at centers in the United States and Europe. A fetoscopic method is where providers repair the baby’s MMC while in the uterus using a small fiberoptic camera and thin, small instruments. This minimizes the risks to the mother because an incision (opening the uterus) is not required.  Without an incision on the uterus, the woman can labor (if appropriate) when the time of delivery occurs.  

At this time, it is uncertain if this type of fetal MMC repair has the same benefits found from the present operation with the incision on the uterus. 

Spina Bifida: Sarah and Hadley's story

At their 20-week ultrasound, Sarah and her husband, Jed, were excited to learn Sarah was carrying a baby girl. But their doctor also gave them some very serious news—their child had a neural tube defect called open myelomeningocele, the most severe form of spina bifida. Sarah's doctor shared that fetal surgery might be an option for Hadley. Sarah and Jed turned to Dr. Emanuel "Mike" Vlastos at Children's Mercy to create a care plan.

Meet Sarah and Hadley
Baby Hadley, diagnosed with spina bifida and treated at Children's Mercy

Spina Bidifa: Mary Kate's Story

Having a child is nothing new for parents Jean and Brendan McPherson, who already have four children. But the diagnosis of their fifth child is something they could have never imagined they would experience. Little Mary Kate had open myelomeningocele—also known as spina bifida. With the direction of Dr. Vlastos and the fetal surgery team, the McPhersons made the decision to give Mary Kate surgery while still in the womb.

Meet Mary Kate
Mary Kate receives care in the Fetal Health Center at Children's Mercy

Spinal Differences Clinic, care for your growing child

 

Through Children’s Mercy’s Spinal Differences Clinic, children and adolescents with spina bifida and other spinal cord injuries or disorders have access to coordinated, team-based care. Our program bridges the gap between primary and specialty care, and provides a vital link to medical and support services available to children with these disorders.

Learn about services provided in the Spinal Differences Clinic.