Sarah and Jason Rouse were eagerly awaiting the birth of twin boys when doctors found a neck mass on one of the fetuses. Like most parents, the Rouses found the news overwhelming and distressing. Sarah says, “It’s scary; scary to hear something’s wrong with your baby.”
The Rouses were referred to The Fetal Care Center of St. Louis Children’s Hospital and Barnes-Jewish Hospital for evaluation and care. Because the neck mass would interfere with one of the twins’ ability to breathe at birth, the team devised an alternate delivery plan, a procedure called ex utero intrapartum treatment, or EXIT.
Doctors would deliver Ben first, then turn their attention to Caleb, the twin with the neck mass. Caleb would be delivered in stages, allowing the placenta and umbilical to act as a natural bypass machine to keep Caleb’s oxygen levels stable.
On the day selected for delivery, the team that assembled was sizable. There was an anesthesia team for Sarah Rouse and another one for Caleb. A maternal-fetal medicine team managed the surgery required to deliver the babies, and a number of pediatric specialists were present to manage any issues the babies might have after birth.
Jason Rouse remembers sitting outside the delivery room, watching the proceedings through a window. “They pulled Ben out,” he says, and he watched a nurse whisk the baby away so that the team could turn their attention to Caleb.
Caleb’s birth happened in stages. First, an arm was delivered so that the team could administer medicine to prevent pain and affix a monitor to assess oxygen levels. Next, Caleb’s head was delivered, but he remained attached to the umbilical cord he and his mom shared. Then David Molter, MD, a Washington University otolaryngologist at St. Louis Children’s Hospital, performed a laryngoscopy, carefully moving a hollow metal past the neck mass and into Caleb’s airway. Caleb could breathe.
At that point, Molter says, “We knew we had two safe babies.”
Several months after birth, both Ben and Caleb are doing well. Sarah Rouse says that for the foreseeable future, their lives will include plenty of doctor visits for Caleb. For now, he uses the breathing tube. But the hope is that, as he grows, specialists will be able to shrink Caleb’s neck mass with a process called sclerotherapy. Once the mass is reduced in size, Molter says, the hope is that it can be surgically removed.
Alison Cahill, MD, MSCI, a Washington University maternal-fetal medicine specialist at Barnes-Jewish Hospital, describes the care and treatment of the Rouses and their babies as a journey, each member of the team doing what was necessary at the time. As a result, one young family has twin baby boys, each of whom has begun a journey of his own.