Meredith Warmington-Fluharty's routine 20-week ultrasound was normal -- with the exception of a slightly larger right kidney detected in her second child, a girl. At the 28-week ultrasound, however, the results were devastating for the Bridgewater, NJ mother-to-be and her husband Jeff.
The baby's kidney was fine, but the test showed she had a sacrococcygeal teratoma (SCT), a tumor located at the base of the fetus' tailbone (coccyx). Although rarely malignant, it can grow rapidly to almost the size of the fetus and cause both fetal and maternal problems.
The couple was shocked and distraught.
"Don't even research it on the Internet," Meredith's local New Jersey obstetrician counseled. "We will handle it."
"I had never even heard of SCT before," Meredith says. "I didn't know what to do, and didn't want to share the shocking news with anyone but our family." Husband Jeff, like Meredith, was an elementary school teacher. But when he returned to work the next day in a state of shock, he did share the diagnosis with the school's nurse. She volunteered to call her former college roommate, a nurse at the Center for Fetal Diagnosis and Treatment at The Children's Hospital of Philadelphia.
The Fluharty's got a call back from CHOP immediately.
"The nurse explained the condition, and told us that the Fetal team could do the surgery to remove the tumor. If necessary, they would use a special procedure called "EXIT." During an EXIT (ex-utero intrapartum therapy) procedure, the baby is delivered through an abdominal incision, but remains connected to the umbilical cord. "I felt so comfortable talking to the nurse, I decided to go with Children's for the surgery. I didn't want to hear it was OK, and not to worry. I liked how serious CHOP was about the condition."
Most sacrococcygeal teratomas diagnosed in neonates are not likely to be malignant, and the prognosis tends to be good after surgery to remove the tumor. However, SCT can lead to serious problems in the fetus, including fetal hydrops (heart failure), polyhydramnios (too much amniotic fluid) ro premature delivery. The mother's health can also be jeopardized through what is called "maternal mirror" syndrome, in which the mother's condition mirrors that of the sick fetus.
Meredith went to the Center for Fetal Diagnosis and Treatment for what she calls a marathon day of testing with advanced ultrasound, a fetal echocardiogram, and MRI imaging. "They answered my questions such as how big the tumor could grow, and were great at setting up a treatment plan. I felt I was in the right place."
The mother-to-be then made the hour-plus trip to CHOP every week to monitor the tumor's growth. Meredith recalls she would hold her emotions together during the week -- until she reached the Center and the examination room. "Then I would start crying. The staff was so comforting, I guess I felt I could let down."
As the baby developed, the tumor started to increase in size. At 33 weeks, the baby weighed 4 lb. -- and the tumor about half of that.
During one of the visits to CHOP, Meredith began to have lower back pain. The Fetal team determined she was in labor. And since the couple had their 4-year-old with them at the time, Meredity recalls how the nurses and social worker pitched in to take care of him until a family friend was able to travel to CHOP to bring him home.
Rowan Fluharty was delivered via Cesarean section at 7 p.m. in Children's Hospital on January 18, 2006. She weighed about 5 pounds. The EXIT procedure was not necessary, but she needed a substantial blood transfusion equal to one and a half times the amount of her blood. The baby was immediately taken to the Newborn/Infant Intensive Care Unit, and surgery was scheduled for the next day to remove the massive SCT.
The complicated surgery lasted about six hours. And although the baby did well after the surgery, she didn't open her eyes until about 10 days of age. Meredith clearly remembers the first time.
"She knew my voice by then and would move around when I spoke. At one point, I was talking ot her and she actually opened her eyes. I was sobbing with joy."
Now Rowan is doing well. She has reached all her developmental benchmarks, her mom says proudly, and is a strong, active toddler who holds her own with her older brother.
Meredith lauds the N/IICU nurses, the Ronald McDonald House staff where she stayed during the baby's recovery, and the entire Fetal team. "We felt so supported at CHOP; we weren't going through it alone."
Finally, Meredith sums up how she feels about her experience at CHOP: "We are forever grateful to the team for their kindness, consistent support, and all that they have done for our daughter. It was a tough year, but looking at Rowan now, you would never know she had the tumor."