Center for Fetal and Maternal Health – 1,000 patients

Zoë Bower was 18 weeks pregnant when she and her husband, Dan Edelstein, received devastating news during a prenatal ultrasound: The fetus had a hole in the diaphragm muscle that normally separates the chest and abdomen.

The hole, called a congenital diaphragmatic hernia, would make breathing impossible at birth. And it had already allowed the fetus’s developing intestines to move up into the chest and crowd the growing lungs. The prognosis for a fetus with CDH is uncertain. Bower and Edelstein had been eagerly anticipating a second child, but now they wondered if there was any hope for this pregnancy.

The couple consulted with physicians at the Center for Fetal and Maternal Health at Lucile Packard Children’s Hospital, a team with deep experience in explaining fetal diagnoses, managing complex pregnancies, and caring for high-risk infants and children. Since its 2009 opening, the center has helped more than 1,000 families through complex medical problems that threaten the health of the fetus, the mother, or both, developing comprehensive continuum-of-care plans.

“Our aim is to provide outstanding care to women carrying fetuses with complex anomalies starting before their infants are born,” said Susan Hintz, MD, a neonatologist and the center’s medical director. At any given time, the center’s team of physicians, coordinators, and nurse practitioners are following 65 to 75 pregnant women—40 percent of whom travel more than 80 miles to obtain the team’s expertise. The team plans everything from which physicians should be in the delivery room to what type of follow-up care to put in place for infancy and childhood. They include experts from every subspecialty at Packard Children’s, from the maternal-fetal medicine physicians who care for expectant mothers, to the neonatologists, radiologists, geneticists and other medical and surgical specialists who provide diagnostic and treatment expertise to critically ill infants.

“We really needed to know: Is this hopeless or can we see some hope there and make a go for it?” Bower said, recalling her family’s first consultation with Hintz and Krisa Van Meurs, MD, who provides sophisticated ventilation support for infants in her role as director of the neonatal extracorporeal membrane oxygenation program at Packard Children’s. CDH carries serious risks, but depending on the gravity of the prenatal findings, and with expert medical and surgical care for the baby, many patients thrive, Van Meurs and Hintz explained.

“It’s hard to describe how incredibly soothing—not naively optimistic but just caring—they were,” Edelstein said. “They spent at least an hour with us, answered every question we had and gave us hope.”

Together with Bower and Edelstein, the team began planning for the arrival of a baby girl who would be named Eloise. Hintz and medical social worker Jane Zimmerman provided support throughout Bower’s pregnancy. The family learned about Eloise’s prognosis and got hands-on preparation for her birth, including a tour of the Packard Children’s Neonatal Intensive Care Unit and an introduction to the different kinds of breathing-support machines that might help Eloise after her birth.

“It did make a big difference, being able to picture these things beforehand,” Bower said. “There were two CDH babies in the NICU when we visited, and we were even able to talk to their parents. That was an aspect of care you wouldn’t get if there wasn’t a center coordinating everything.”

Meanwhile, Hintz and the fetal center coordinators were making sure that all the Packard Children’s experts who needed to weigh in had consulted on Eloise’s case, including pediatric general surgeons, radiologists, and maternal-fetal medicine physicians who guide care for the expectant mother during the pregnancy.

“From a patient’s perspective, knowing that multiple people are reviewing the diagnostic tests and looking at them from different angles, with different expertise, was very reassuring,” Bower said.

About 15 caregivers were present when Eloise was born—after an uncomplicated labor on Bower’s due date—and provided immediate care that included inserting a breathing tube within 30 seconds of her birth. Edelstein went with the care team to the NICU, and watched as they worked to help his newborn daughter breathe.

“They were trying to stabilize her; it was really scary,” he recalled. It took nine hours of intense attention from the medical team, but finally Eloise was getting enough oxygen from an oscillator, a specialized ventilator that keeps the lungs continuously open.
Nine days later, Eloise received the surgical repair she needed: a Gore-Tex patch to close the hole in her diaphragm. She made a slow but steady recovery, returning home at age six weeks. A few days later, a gastroenterologist at a check-up told her parents it was time to remove the nasogastric feeding tube that had been helping the fragile infant get enough nutrition.

“She was finally wireless,” Edelstein said. “That’s when she really felt like a normal baby.” Eloise is now 13 months old, running around, eating like a champ, and having fun with her 3-year-old big sister.

And the team at the Center for Fetal and Maternal Health is preparing for the next 1,000 families who will come through Packard Children’s doors with complex fetal and maternal diagnoses. “We’re able to apply the lessons learned from the first 1,000 cases to all our future patients,” Hintz said. “That is resulting in very innovative approaches to complex deliveries. We look forward to being able to help many more patients in the future.”