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Riley's Sacrococcygeal Teratoma Survivor Story 

Abnormal results from a routine blood test helped doctors discover that Emily Theil’s unborn son had Sacrococcygeal Teratoma (SCT), a tumor that forms at the base of the baby’s tailbone. This is a rare condition, affecting 1 in every 35,000 babies. SCTs develop from the same type of cells that form the reproductive tissues, like testes and ovaries. When the cells develop abnormally, a SCT can result.

SCTs can typically be seen on an initial ultrasound and abnormally high levels of maternal alpha-fetoprotein in a blood test can also signal that a tumor is present. Once it is known that an SCT is present, frequent monitoring through regular ultrasounds is very important.

The tumor, which is often benign, can cause a variety of complications. One of the most common problems facing babies with large SCT’s is prematurity. Fetuses with SCT often develop polyhydramnios or extra fluid in the uterus. This problem, combined with signals from the fetus, often results in premature loss of fluid and labor.

Large SCTs can also steal blood flow away from the developing fetus. The additional blood flow needed to supply the large tumor can cause the fetus to develop heart failure (hydrops). In this setting, the mother can also develop “maternal mirror syndrome,” where the mother starts to mirror symptoms of the sick fetus—most commonly developing pre-eclampsia, which can be life-threatening if untreated. SCTs can also bleed due to trauma during the delivery process.

“When my doctor gave me the diagnosis I was upset and scared. I just didn’t know what to expect,” says Emily, who was referred to FCI when she was 20 weeks pregnant. The team at FCI performed an ultrasound and MRI to get a better view of the mass and its size, and an echocardiogram (ECHO) to check the baby’s heart. Emily also met with SSM Cardinal Glennon Children’s Medical Center pediatricians and neonatologists, and the FCI social services and genetics teams.

Throughout her pregnancy, the FCI team closely monitored Emily’s baby via ultrasounds and non-stress test to ensure his heart was healthy and that there was not too much amniotic fluid, which can signal heart problems. If Emily’s baby had begun showing signs of heart trouble the team would have explored an early delivery to save him.

On April 23, a 7 lb., 11.5 oz. Riley made his entrance to the world at SSM St. Mary’s Health Center. Because of the SCT, Emily was scheduled for a cesarean section delivery. Babies with SCT are typically delivered via c-section to limit the chances of the mass rupturing, or causing further harm to the baby.

“The delivery was scary, I wasn’t sure what to expect for Riley’s future. The doctors let me see him for a few minutes, then he was taken to Cardinal Glennon where the NICU team could monitor him and prepare him for surgery,” says Emily.

When he was born, Riley had a SCT that was the size of a small orange (27 cm circumference). Doctors in the NICU monitored Riley to ensure he could safely handle surgery to remove the SCT. On April 25, the mass was removed and a few days later, on May 9 Riley was able to go home.

Now, Riley is an active baby. Emily says he always the center of attention, making everyone smile with his outgoing personality.

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