When Lauren McDonough began experiencing contractions midway into her first pregnancy, her doctor suspected everyday stress might be the cause. When those contractions became her “constant companion,” Lauren said stress turned to real worry. Noting very high amniotic fluid levels, her doctors suspected an esophageal atresia, in which the upper and lower parts of the fetus’s esophagus do not connect. They recommended she go to Yale New Haven Children's Hospital Fetal Care Center to see a maternal-fetal medicine specialist.
At the Fetal Care Center, an ultrasound revealed an esophageal atresia was indeed the cause of Lauren’s polyhydramnios, or excess fluid. “Amniotic fluid is mostly the baby’s urine. Swallowing and urinating is the cycle, and if there is any obstruction along the way, it can cause too much fluid to accumulate,” says Mert Ozan Bahtiyar, MD, a maternal-fetal medicine specialist, and the director of Fetal Care Center. That same day, Dr. Bahtiyar and the Fetal Care Center team of maternal fetal medicine specialists, neonatologists, pediatric specialists and pediatric surgeons began to devise a plan to address the baby’s atresia.
When it came to discussing her baby’s condition with the Fetal Care Center team, “I really appreciated their candor,” said Lauren. “They said to us, ‘We understand this is going to be tough. This is rare to you, but it’s not rare to us.’”
Esophageal atresia is one of the many complex conditions affecting fetal development commonly treated by the physicians working with the Fetal Care Center. The Center also coordinates complex in-utero surgical procedures, including fetal blood transfusion, fetal shunt placement, radiofrequency ablation, and fetoscopy.
Established in 2014, the Fetal Care Center, a joint effort between Yale School of Medicine and Yale New Haven Children’s Hospital, oversees the care, from diagnosis through delivery, of obstetric patients whose ultrasounds reveal fetal anomalies. “We keep an eye on ultrasounds almost in real time,” says Dr. Bahtiyar. The Center’s Care Coordinator, Diane Wall, RN, keeps up-to-the minute information, including ultrasound updates, delivery plans, and test results, for typically 80 patients at any time. Dr. Bahtiyar says, “One of the very important things Diane ensures that all necessary tests and consultations are done in a timely fashion. There are variety of systems in place to monitor patients, but it all still relies on human intelligence.”
The Fetal Care Center convenes a multidisciplinary team each week, led by Dr. Bahtiyar and Diane, to coordinate the care crucial for at-risk babies in utero, and to relay key information to the pediatric specialists so they will be fully prepared to take over the care of these babies once they are born. Diane also provides emotional support to patients, listening to their worries and concerns, and fielding questions. Two social workers provide additional support to patients through group sessions as well as home visits.
In Lauren’s case, surgery would wait until her son Kevin was born so that further tests could be performed. The Fetal Care Center supervised her care throughout the pregnancy while collaborating with pediatric surgeons and neonatologists to ensure a seamless transition of care once Kevin was born. Well before giving birth, a meeting was scheduled for Lauren to meet the pediatric team that would care for her son “So that when he was delivered, she knew who was going to come and see her. She knew what was going to happen to the baby,” stated Dr. Bahtiyar. This unique, thoughtful approach allows the family to have all of their questions answered at once instead of meeting individually with each provider.
“It used to be that families would have a meeting with a surgeon, but during that meeting, they would have a lot of questions about the neonatal care,” says Doruk Ozgediz, MD. “They would then have a separate visit with the neonatologists. It's fragmented care,” said Dr. Ozgediz, who with Michael Caty, MD, would eventually perform the surgery to connect Kevin’s esophagus following his birth.
“There are a lot of centers that have great physicians, but the things that make hospitals work for the more complex cases is the ability of the different specialties to communicate with each other and come up with coordinated plans, and then present them in a very organized, patient-centered way to the families,” added Dr. Ozgediz.
Dr. Ozgediz worked with the Fetal Care Center, a team of pediatric surgeons and neonatologists to devise a strategy for Kevin’s surgery. Together, they decided to keep him in the Neonatal ICU for several months to allow time for the esophagus to further develop.
Baby Kevin, named after his father and grandfather, spent 118 days, between birth and recovery from his surgery, in the Neonatal ICU, but was able to leave the hospital in time to celebrate his first Christmas at home with his family. Lauren McDonough has been able to return to work, and says that Kevin, known as “the mayor” of his day care, is doing very well. He returns to Yale New Haven Children’s Hospital periodically to continue his care with Dr. Ozgediz and the pediatric gastroenterology team.
“In this case, Dr. Ozgediz will follow Kevin, probably until he is a teenager,” says David Stitelman, MD, another member of the pediatric surgery team who cared for Kevin. “He started thinking about this child before birth. To have that kind of continuity of care is very special.”
