After 11 years of hoping for a baby, Stephanie and Bryan Maines were over the moon when they found out they were expecting. At four months pregnant, Stephanie experienced abdominal pain and went to her local hospital in Dubois, Pa. Doctors performed an ultrasound and spotted a golf ball-sized mass on the fetus’ neck.
“We were devastated,” Stephanie remembers. “It was overwhelming because we tried for a baby for so long and then we hear something is wrong.”
The other news Stephanie and Bryan received was that they were expecting a girl.
To receive the specialized care they needed, the Maines family was referred to Stephen Emery, MD, director of the Center for Innovative Fetal Intervention at UPMC Magee-Womens Hospital. The Center partners with UPMC Children’s Hospital of Pittsburgh to coordinate treatment for fetal abnormalities.
The rare benign mass, diagnosed as a teratoma, pressed on the fetus’ esophagus, blocking the ability to swallow and eventually to breathe. If the baby had any chance of survival, doctors would have to establish her airway during delivery.
Stephanie’s water broke early as a result of the abnormality. A helicopter flew her to UPMC Magee, where doctors were able to delay labor another week. But at 32 weeks, they couldn’t wait any longer. It was time for delivery.
“My husband told me he loved me,” Stephanie recalls. “Then he kissed my belly, told her that he loved her, and that she was strong.”
The multidisciplinary medical team performed a procedure called ex utero intrapartum treatment (EXIT), a specialized c-section that allowed them to create an airway for the baby. UPMC is the only health system in the region qualified to perform this lifesaving procedure, which involves specialists from numerous medical disciplines. According to Dr. Emery, “There can be 30 people in the room at the same time. This procedure shows the strength of UPMC. When Magee and Children’s collaborate, we are really powerful.”
During the EXIT procedure, doctors partially delivered the baby — her head and right arm visible — while keeping her attached to Stephanie through the umbilical cord and placenta. This allowed her to receive oxygen from her mother while doctors worked to insert a breathing tube.
On September 19, Haven Rayn Maines was born with black hair like her dad, weighing just over five pounds. The mass in her neck had grown considerably and accounted for almost half her body weight.
Once the doctors successfully established the airway, they completed the delivery and cut the umbilical cord. Stephanie had only a moment to see Haven before the newborn was taken to the neonatal intensive care unit (NICU) at UPMC Magee, where the neonatology team worked to stabilize her for transport to UPMC Children’s. Once there, the NICU team prepared her for surgery on the dangerous teratoma.
In the two weeks before surgery, Stephanie and Bryan were able to visit Haven in the NICU at UPMC Children’s but couldn’t hold their long-awaited baby because of her delicate airway.
Allison Tobey, MD, pediatric otolaryngologist at UPMC Children’s, recalls, “Haven’s mass contained almost half her blood volume. Removing that much blood put her at high risk, but she wouldn’t have survived if the mass remained.”
When Haven was two weeks old, Dr. Tobey and her team removed the mass and performed a tracheostomy, creating an opening through the neck into the windpipe, stabilizing Haven’s airway.
Stephanie and Bryan were finally able to hold Haven in the NICU. “It was amazing. All you want to do as a parent is hold your child. Haven is my hero,” Stephanie says.
After six months in Pittsburgh, the family was finally able to go home together. They are grateful their daughter is with them today. While Haven will need care for the foreseeable future, she is doing well. “We couldn’t ask for better doctors than those at Magee and Children’s,” Stephanie says. “I can’t thank them enough. They saved my baby’s life.”
To make an appointment with a UPMC physician, please call 1-800-533-8762 (UPMC), or request an appointment online.