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Clinical Practice

Feature: Caring for our smallest people—even before they arrive!

By: Loralei L. Thornburg, MD Director, Maternal-Fetal Medicine Division

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Most of the time, pregnancy is great. Ultrasound pictures show a healthy heart and adorable little profile- and new parents can start planning for their bundle of joy’s arrival in the usual, routine ways. But sometimes, those ultrasound images reveal that a new baby is going to need advanced monitoring, care, and delivery coordination- both before and after birth-- to help them do their best. Even when a diagnosis is something treatable and manageable, receiving the news that things are going to be “less than routine” is scary.

These families need unique support to navigate a whole new process, which often involves specialized imaging, complex testing, and meetings with the delivery team and other specialists who will be caring for baby after birth. Many of these families will come from across the Finger Lakes community -- spread over 9000 square miles—meaning that the baby may need to be delivered far away from local physicians, family, and community networks to get the special support and care that is going to be needed.

Stephanie Laniewski, MS, CGC, and Diana Bailey, MS, CGC

The Maternal-Fetal Medicine Division at Strong Memorial recognized that these families with prenatal complex fetal diagnoses were facing unique pregnancy challenges and needed additional support to assure the best outcomes. Two of our genetic counselors immediately stepped up- Stephanie Laniewski and Diana Bailey – and starting in 2016, they transitioned to help facilitate this care as our new fetal care coordinators.

This was a natural fit for Diana and Stephanie – as full time genetic counselors in Maternal-Fetal Medicine they were already counseling many of these patients on the genetic implications of the ultrasound findings. They were also already helping arrange genetic testing (which often goes through specialized reference labs requiring preapprovals and complex authorization), so they were already well acquainted with, the questions and issues these families were facing, and the diagnoses and prognoses for these children, and the needed care coordination. Together they took on the added challenge of coordinating all of the prenatal testing and specialist care for these complex fetal patients to help families get the information needed to start planning for baby’s arrival.

Every family’s situation is unique; and while some patients may only need a few extra visits, many will require multiple hours of coordination. Over the past 5 years, Stephanie and Diana have helped coordinate over 1300 specialist visits and consultation for more than 900 families facing complex fetal care needs from across the region! The fetal care coordination team works together with other support specialists from the Golisano Children’s Hospital and URMC, including social workers, nursing teams, child life specialists, and behavioral health teams. Their work extends beyond URMC, incorporating community organizations such as the Ronald McDonald house, URMC Homecare, and CompassionNet services to help garner needed support.

One area of behind the scenes work is assuring that all complex fetal cases are presented to the multidisciplinary prenatal diagnosis team, and the surgeons, maternal-fetal medicine, cardiology and neonatology specialists all have the opportunity to weigh in on additional care needs, and if an infant can safely be delivered closer to home, or needs to come to Strong Memorial for delivery. Stephanie and Diana then follow up with families, and the primary ob/gyn offices to assure that information gets back to the regional teams, as well as help patients can share care when possible.

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For the most complex cases, the Complex Delivery team- led by Dr. Scheible (NICU) and Dr. Drennan (MFM) will meet (again coordinated by Stephanie & Diana) with relevant specialists, nursing, anesthesia, and other team members to review timing, planning and in some cases even rehearse the delivery day plan, all to allow for a seamless birthday!

"The fetal care coordinators have been instrumental to help us implement patient centered care in a group of patients affected by complex fetal disease for whom this approach is revolutionary, and often lifesaving.”

Kathryn Drennan, MD

MFM Director of Complex Delivery Services

The University of Rochester houses the region’s only MRI scanner capable of fetal MRI imaging at the Golisano Children’s hospital pediatric imaging center. This ultra-fast MRI scanner helps families learn more about their baby’s condition by imaging critical organs such as the lungs or brain structures while they are still inside their parent. Only a select few specialists have the background and experience needed for obtaining and interpreting this type of MRI imaging. Our patients can feel secure that our fetal care coordinators will take charge of referring, scheduling, and organizing these appointments, allowing families to focus on the results and planning for the baby’s birth. In 2021, 24 patients in the Upstate region benefitted from the ability access fetal MRI right here in Rochester.

Diana and Stephanie estimate that most patients and families facing a new fetal diagnosis or concern will need at least 4-5 hours of personalized coordination—and the specialist team for each patient will be slightly different depending on the anticipated needs for their infant’s care. In 2021 alone they helped arrange more than 300 consultations and visits to help support these infants with complex diagnoses. Part of the care coordination and delivery planning process involves the family meeting with a team of providers through the Perinatal Supportive Care Clinic. This clinic (which at present is completely virtual), allows families to “sit down” via video chat with a team of specialists from the Golisano Children’s Hospital- including Neonatology, Pediatric Supportive Care, and Social Work- and is a wonderful opportunity to understand and prepare for what will be happening in their baby’s first few days of life. The virtual nature of this meeting allows families of any size and in any location to attend, allowing for participation from family support persons who, in the time of COVID-19, may otherwise not have been able to come to the hospital. In 2021 the PSCC team met with more than 80 families, providing the prenatal support and information they needed.

Kristin Scheible

“The fetal care service has been invaluable in establishing and maintaining continuity of care for our most complex perinatal patients. Fetal care coordinators bridge the pre- and postnatal team members to provide counseling, assist in delivery planning and appropriate postnatal evaluation so families can experience a seamless transition from one team to another. Their services have greatly reduced the stress for families and team members through the shared mental model that they build.” Kristin Scheible MD, NICU attending NICU Director of Complex Delivery Services

Obstetrical Ultrasounds Completed 2020 - 2021

Total = 26,755

Visit our URMC MFM website to learn more about some of the more common conditions that benefit from our fetal care program, and to learn more about some of the families and babies that have benefited from this unique service. The MFM division and the Golisano Children’s Hospital team sees the highest number of these conditions in the Upstate regions, and has team members on-site every day with the experience to care for these complex infants and children. This experience and excellence is why Golisano Children’s Hospital is recognized as one of the nation’s best in the neonatology specialty area in U.S. News & World Report’s Best Children’s Hospital rankings.

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Since starting their work in 2016, Stephanie and Diana have helped over 980 families facing complex fetal care needs, including the families of Wyatt Robson and Bentley Beardslee. Two very “un-routine” little guys, Bentley was found to have a large mass called a CPAM in his lung during his mother’s routine ultrasound exam during her 20th week of pregnancy, and Wyatt was found to have a congenital diaphragmatic hernia (CDH) at a similar time-- both of which prevent development of the normal lung tissue. Both needed a range of specialist planning and coordination—both before and after birth.

While the medical care and the specialists working together made Bentley’s and Wyatt’s survivals possible—getting that care coordinated, the visits arranged, and assuring the family had the support – well—that is where the behind the scenes work of our fetal care coordinators comes in! Stephanie and Diana are with our families every step of the way—and their personalized care and coordination is so appreciated by families, patients, and every team member. From assuring that families know where to come for various appointments, to answering email and MyChart messages as questions arise- the work they do shines through when these little people do well and ultimately get home safely.

Wyatt Robson
Bentley Beardslee

While planning for these deliveries is anything but routine, knowing that the extra time and effort will allow for the safe arrival of these “un-routine” bundles of joy makes it entirely worthwhile!