When patients receive news that there may be something wrong with the fetus they are carrying, maternal-fetal medicine specialist Angie Jelin and her colleagues have a comprehensive and multidisciplinary system in place to help patients and their families know more about their baby’s condition and what to expect through pregnancy, birth and beyond. The first step, she says, is getting a better look at the fetus in utero to make a more conclusive diagnosis.
Using ultrasound and occasionally MRI, a skilled team of technologists perform imaging not just of the abnormality in question, but of the entire fetus to identify any additional anomalies that might be affected by global syndromes. Once they’ve identified any issues affecting the fetus, the patient is offered a consult with genetic counseling, if necessary, so they can better understand the diagnosis.
Once the diagnosis is clear, the multidisciplinary team springs into action. Jelin and her colleagues meet once a week to discuss all their complex cases, looping in other experts from fetal-maternal medicine, fetal therapy, NICU and PICU physicians and nurses, and other pediatric subspecialties, depending on the issues being discussed. These might include cardiology, neurology, neurosurgery, or experts from Johns Hopkins’ Greenberg Center for Skeletal Dysplasia. Social workers and chaplains also often attend these meetings as well, Jelin notes.
After this multidisciplinary team develops a plan, patients and their families are invited to meet with each of the members involved in their care. As often as possible, Jelin says, these appointments occur in conjunction, sparing patients multiple appointments on different days. A new fetal program nurse coordinator, who started in August 2018, works with patients and members of the care team to schedule these joint appointments, help them navigate the medical system, and stay well informed throughout this process.
The team then follows patients throughout their pregnancies, deliveries, and postnatal/neonatal period, making sure that they and their babies receive the most comprehensive care possible. Such close follow-up during this stressful time can help ease patients’ anxieties at each step, Jelin says.
“The unknown is a cause of stress for patients,” she adds. “When they come to the perinatal ultrasound unit, we provide them with specifics about how things are going to happen, how their baby’s condition will be managed, and who they’ll work with. This knowledge can help empower them, and takes away the stress of the unknown.”