A family looks back on their child’s journey from a devastating prenatal diagnosis to hope at Children’s Hospital of Philadelphia and now an athletic scholarship to college.
It happened nearly 20 years ago, but Stephanie remembers it like it was yesterday. She was 18 weeks pregnant with her second child when an ultrasound detected a large tumor on the fetus’s tailbone.
“The technician got an odd look on her face and said the doctor would be in to talk to us,” Stephanie recalls. “I looked at my husband and started to cry.”
The doctor said their daughter could die before birth, and if she lived, her bottom would be terribly disfigured. He advised the couple to terminate the pregnancy.
Stephanie and her husband were devastated. They didn’t want to terminate, but didn’t know where to turn. The Internet wasn’t the information superhighway it is today. All they knew was what their doctor told them, which left them hopeless.
Fortunately, Stephanie’s sister-in-law had access to a medical database. She found out more about the tumor and that there was hope: a surgeon named N. Scott Adzick, MD, founder and director of Children’s Hospital of Philadelphia’s Center for Fetal Diagnosis and Treatment (CFDT), had success treating such tumors before and after birth.
Stephanie and her family lived in New Jersey at the time, about two hours from Philadelphia, so they called the CFDT and set up an appointment. After a thorough, daylong evaluation, the CFDT team confirmed the tumor as a sacrococcygeal teratoma (SCT) and sat down with the family to explain the diagnosis and discuss treatment options.
A treatment plan for sacrococcygeal teratoma
Sacrococcygeal teratomas are tumors that develop before birth and grow from a baby’s tailbone. They are the most common tumors found in newborns. The size and severity of SCTs can cause life-threatening complications for mother and baby. Most teratomas diagnosed before birth aren’t cancerous yet, but if they aren’t dealt with quickly, cancer will occur.
The plan was for Stephanie to be monitored extremely closely to watch for any growth of the tumor and signs of heart failure in the fetus, and then deliver the baby at 36 weeks and remove the tumor shortly after birth. If anything went wrong before the planned delivery date, the CFDT team was prepared to perform lifesaving fetal surgery to remove the tumor before birth.
“I was absolutely terrified, but they had a plan,” says Stephanie. “I can’t tell you what it feels like to think your baby is going to die, and then we walked through those doors and they gave us hope. It was just amazing.”
The rest of the pregnancy was a roller coaster. The teratoma caused polydydramnios, which is too much amniotic fluid in the uterus. This can cause the uterus to expand and get much bigger than it should be. It can fool the body into thinking it’s time to go into labor. Stephanie had a procedure — called an amnioreduction — to remove some of the amniotic fluid to reduce the size of the uterus and the chance of preterm labor.
During recovery from the procedure, she had a bad reaction to a medication. All along, CHOP’s obstetric team, led by Mark P. Johnson, MD, provided support and a solution.
“It was really scary,” recalls Stephanie. “I cannot say enough wonderful things about Dr. Johnson, Dr. Adzick and the whole fetal team. They are amazing. Everyone there was fantastic.”
Stephanie made it 36 weeks and delivered her daughter Kate by C-section at the Hospital of the University of Pennsylvania, which is connected to CHOP by a passageway. After birth, Kate was taken through the passageway to CHOP’s Harriet and Ronald Lassin Newborn/Infant Intensive Care Unit where she was stabilized.
Today, thanks to the creation of the Garbose Family Special Delivery Unit, the world’s first birthing unit within a pediatric hospital dedicated to healthy mothers carrying babies with serious and life-threatening birth defects, babies like Kate can be delivered at CHOP.
Surgery to remove the SCT
Two days after Kate’s birth, Dr. Adzick surgically removed the tumor. The primary goal of surgery is to completely remove all of the tumor as well as the tailbone to avoid a risk of recurrence. Surgery also involves reconstructing the child’s bottom in an anatomical way.
Two weeks after surgery, Kate was discharged home. She returned to CHOP every six months to ensure there was no recurrence of the tumor. At age 5, she got a clean bill of health.
“Nothing has stopped her. She’s strong and she does everything,” says Stephanie, whose family has since moved to Georgia. “Of everything we read about that could have been an obstacle, the only thing she has is a scar.”
A bright future
Kate had a healthy, active childhood, doing everything other kids her age could do. She loved to dance, ran track, and has played softball since age 7.
When she was little, she wore her scar with pride, saying she had it because god and the doctors saved her. As she got older, she became self-conscious about it and has undergone plastic surgery to improve its cosmetic appearance.
Kate is now attending college on a softball scholarship and studying to be a veterinarian.
“It was a horrible thing to have to go through as a parent,” says Stephanie. “But from the moment we walked through the doors at CHOP, we felt comforted and we felt hope. My husband and I thank god every day that we found Dr. Johnson and Dr. Adzick. They are our dream team.”