Open fetal surgery for sacrococcygeal teratoma (SCT)

What is open fetal surgery for SCT?

Sacrococcygeal teratoma is a tumor on the tailbone that can lead to life-threatening complications. The baby can develop fetal hydrops (a build-up of fluid in the body), which is a sign of heart failure and can cause the baby to die. The mother can also become sick with mirror syndrome, developing preeclampsia-like symptoms in response to the fetal hydrops. In severe cases, open fetal surgery may be the only way to save the pregnancy.

This complex procedure, available at only the most specialized centers, involves removing all or most of the tumor before the baby is born. The fetal surgical repair is similar to the standard procedure done after birth, but doing it during the pregnancy can stop any complications caused by the tumor and reduce the strain on the baby’s heart. Prenatal surgery is recommended only if your baby’s condition is deemed life-threatening; otherwise it is recommended that surgery wait until shortly after birth.

During the procedure, the mother and baby are asleep under general anesthesia and given medications for pain control. The operating room team includes multidisciplinary experts dedicated to caring for mom and baby: maternal fetal medicine specialists, the fetal surgeon who removes the tumor, a pediatric cardiologist who monitors the baby’s heartbeats, and anesthesiologists for both the baby and mother.

After making the incision in the mother, the fetal surgeon opens the uterus away from placenta to expose the baby’s tailbone area. Keeping the baby in the womb, the medical team infuses warm fluids into the uterus to keep amniotic fluids normal, allowing the fetus and umbilical cord to continue to float and remain safe. The surgeon removes most or all of the tumor (depending on the tumor’s size and how much is external versus internal) and then closes the opening. After the baby’s surgery is complete, the surgeon then closes the mom’s uterus and abdominal incision. Mother and baby are also given antibiotics to prevent infection. The entire procedure takes approximately two hours.

Candidates for in-utero SCT surgery

Not every baby with SCT is a candidate for this surgery. For safety’s sake, patients must meet the following criteria:

• There must be a compelling reason for fetal intervention (such as life-threatening complications).
• The mother must not show symptoms of mirror syndrome.
• The surgery must be done within a certain time period in the pregnancy — generally between 19-28 weeks.
• The baby must not have a genetic problem or any other major birth defect.
• The mother must be pregnant with only one baby.
• The mother must not have any one of a number of health conditions.

While prenatal surgery offers potential benefits, it also carries risks for both the mother and the baby, including an increased likelihood of premature labor. The specialists at the Fetal Concerns Center will help you decide whether prenatal surgery is the right option for you and your baby.

How does open fetal surgery for SCT affect my baby?

If the tumor is large, it forces your baby’s heart to work much harder to supply blood to the tumor as well as the other parts of the body. Removing most or all of the tumor reduces the heart’s workload and the likelihood of hydrops, allowing your baby’s body to rest and continue developing in the womb as long as possible. Babies with hydrops who undergo open fetal surgery have a significantly higher survival rate than those who do not undergo fetal invention.

How does open fetal surgery for SCT affect the pregnancy?

To decrease the risk of preterm delivery, you will need to remain on modified bed rest after the surgery. You will be closely monitored for the rest of your pregnancy, and you will need to deliver your baby via a scheduled Cesarean section at 37 weeks, unless you go into labor earlier, at the Froedtert & the Medical College of Wisconsin Birth Center.

What happens after surgery?

You will remain in the hospital for 4-5 days after the prenatal surgery.

What about after birth?

In some cases, your child may need further surgery after birth if some of the tumor remains (as is the case with tumors that have an internal component). After birth, your baby may require extra care in Children’s Wisconsin’s Level IV Neonatal Intensive Care Unit, which is ranked as one of the best in the nation.

Will I be able to help care for my baby?

Absolutely. Our recently expanded and redesigned NICU was created to promote family bonding, with private rooms where parents can stay with their baby 24/7, and other special features for families’ comfort. Our on-call lactation specialists can help you successfully breastfeed and pump and store breast milk when direct breastfeeding isn’t an option.

When can my baby go home?

The incision in your baby’s back needs to heal before he or she can go home. Depending on how your baby does, he or she may be able to go home after 2-4 weeks. Premature babies will likely require a longer NICU stay. Your baby will be discharged from the hospital once he or she is healed and is breathing independently, eating well and gaining weight.

What’s my baby’s long-term prognosis?

In-utero repair is still a relatively new procedure, and researchers continue to collect data on how long-term outcomes compare with babies who have the standard procedure after birth. In general, outcomes for children with SCT are very good. Your child may have problems with urinary and bowel control as a result of the surgery, and there is a chance that the tumor will come back if the coccyx (the last bone of the vertebral column) is not removed. Your child should be monitored by a pediatric oncologist and surgeon and will need blood tests for several years to watch for any signs of reoccurrence.

What about future pregnancies?

These tumors occur in only 1 in every 35,000-40,000 births, and having a baby with SCT does not increase your chances of having another child with the same condition. Because the surgical scar on your uterus puts you at increased risk of uterine rupture during childbirth, you will need to wait two years between pregnancies and deliver all future babies via planned Cesarean section no later than 37 weeks.