"The technician told us the doctor would be going over the ultrasound with us," Mary says. "We learned the fetus had a sacrococcygeal teratoma (SCT)."
The tumor, which was situated on the coccyx (tailbone), is the most common tumor of the newborn.
"We were referred to the Center for Fetal Diagnosis and Treatment at The Children's Hospital of Philadelphia (CHOP) for another ultrasound. The CHOP team explained to us that SCT involves cells that go off on their own," says Mary. It occurs in about 1 of every 35,000 to 40,000 live births.
SCT risks to baby and mom
While most sacrococcygeal teratomas diagnosed before birth are not malignant — and the prognosis tends to be good after removal of the tumor — there are serious concerns. SCT can lead to polyhydramnios, a build up of amniotic fluid in the womb that can result in premature delivery.
The tumor also may capture blood from the fetal circulation, causing the baby's heart to work extra hard and go into heart failure. As a result, fluid can accumulate in the body, causing fetal hydrops.
The mother herself can be at risk as her body "mirrors" these conditions and develops preeclampsia (pregnancy-induced high blood pressure).
The baby's SCT was mostly external, but it was solid and vascular rather than cystic. This variation put the baby and Mary at higher risk for hydrops.
Under CHOP's wing
Mary was assigned to a specialized obstetrician at CHOP.
"I was checked weekly with ultrasound and my amniotic fluid volumes were measured. The baby was checked with an echocardiogram every three weeks." Constantly assessing the SCT was important because there is no way of predicting how large or fast an SCT can grow. "Some have doubled in size in a week," Mary points out.
"Although my pregnancy felt no different, I was frightened. I spent the whole summer being scared. Everything was uncertain."
After one of her visits to CHOP, Mary received a call on her way home. "My nurse practitioner said I had looked uncomfortable. I also was starting to have a little more fluid. Since the baby looked good and was well developed, they wanted me to deliver."
On Sept. 15, one month before her due date, Mary delivered Emily via C-section. "There was no way to do a vaginal delivery — her SCT was 3 pounds and she weighed about 7 pounds," Mary says. At the ready was a surgical team in case the SCT ruptured.
"They removed the SCT and her tailbone as well," says Mary.
After the five-hour surgery, Emily spent only eight days in the Newborn/Infant Intensive Care Unit (N/IICU). The Children's Hospital of Philadelphia has an excellent program for acclimating siblings to the N/IICU, she points out. "The girls came to the N/IICU before Emily was born, and were able to visit while she was there.
Preparing to go home
Before Emily left the Hospital, her parents were taught how to catheterize her because she was not emptying her bladder completely. The condition has resolved, but she is being followed by one of the urologists at CHOP.
Since Emily had to sleep on her back, per American Academy of Pediatrics recommendations to avoid Sudden Infant Death Syndrome (SIDS), her parents were not sure if she was crying for comfort or from pain.
"She slept on her belly on us so we could monitor her while slowly helping her grow accustomed to sleeping on her back," Mary says. "As for the pain, we just held her a lot and did our best to comfort her. She liked motion, so we walked and sang to her.
"She gained weight as well, and the stitches were removed soon after," Mary adds. "All the doctors were pleased with her progress."
Keeping up with her sisters
Now, at almost 16 months, Emily is walking well and has met all her developmental milestones.
"She tries to keep up with her older sisters Marion and Maeve," her mother laughs. "They love her so much and she loves them. They were very protective after the surgery when we explained the situation."
"For being in such a horrible situation, I can't say enough for the time we spent at The Children's Hospital of Philadelphia. From walking into the reception area at Fetal Surgery to the surgery — everyone was wonderful, supportive and understanding. We were so lucky to have access to this team."
Mary counsels other parents in a similar situation to address the problem as quickly as possible. "And try to stay positive," she says. "I tried to focus on the next year when she would be getting into everything and trying to climb the stairs. And I always kept my other two children in mind.
"We are so grateful," she concludes. "The fetal team was amazing."
Originally posted: June 2009