New clinic links high-risk fetal care
Women who are expecting babies with congenital abnormalities no longer have to spend days at Vanderbilt University Medical Center walking from one end of campus to the other for appointments with various specialists.
Through a new clinic at the Monroe Carell Jr. Children's Hospital at Vanderbilt, care for these mothers and their babies has been reorganized to incorporate not only their obstetrical care, but also pediatric specialists, all in one location.
Ed Yang, M.D., Ph.D., assistant professor of Pediatric Surgery, is the medical director of the Center for Advanced Maternal-Fetal Care, a multidisciplinary group that advises women and their families who have been told that their fetus has a birth defect, about the prognosis and care of their fetus, options for prenatal treatment and recommendations for post natal treatment.
The Center's clinic meets on Friday afternoons on the sixth floor of the Doctors’ Office Tower at Children's Hospital.
“Our goal is to give moms comprehensive, multi-disciplinary care in one setting,” Yang said.
“Before this clinic, pregnant mothers, their partners and oftentimes even grandparents-to-be would be seen in the OB clinic, then would have to walk all over campus to see the different pediatric specialists — the neurosurgeon, pediatric surgeon, neonatolgist — to see what the baby will be like after birth. These appointments could be on many different days spread out over a long period of time. It was harder to communicate all the issues and very much harder for the doctors to coordinate the baby's care. To facilitate that process and obtain a more accurate diagnosis and an optimal outcome, we organized ourselves into this single clinic to coordinate the care of these mothers.”
Nancy Chescheir, M.D., chair of Obstetrics and Gynecology, said the Center benefits all concerned.
“The fetal patient really doesn't have a doctor,” she said. “Because of the complexity of going from fetal to neonatal life, it's a tough time for the baby because of difficulties of illness or not doing well in utero. It's especially important to have a plan in place between obstetricians and pediatric specialists for after the baby is born, so that everybody knows as much as possible going in, and everybody knows what treatment options are available.”
The clinic has three maternal fetal medicine specialists, including Chescheir, and specialists in Pediatric Neonatology, Neurosurgery, General Surgery, Urology, Plastic Surgery, Cardiology, and also geneticists and social workers.
The unborn babies can have problems including genetic abnormalities, brain and heart defects and urologic malformations.
“For most of the patients, it's about trying to convey what the prognosis is, especially if it's a genetic problem, and trying to convey the most accurate understanding,” Yang said. “Patients come in here with a lot of information from resources that aren't always reliable — from the Internet or from doctors who don't normally take care of a particular problem. They often come here with information that's way off base. So most of our mission is about educating and preparing these patients for what lies ahead so it's not so scary.”
Yang said the location of the clinic in Children's Hospital is especially beneficial because in addition to seeing the specialists gathered there, they can also see the hospital.
“It can be shocking to see it all the first time after the baby is born,” Yang said. “Before, there were all these doctors around, and nobody was familiar. Now we're all a familiar face.”
Yang said that before the patient is seen for the first time, previous diagnostic information, including ultrasound studies and a patient history, is gathered. The first visit includes the appropriate tests, including, most times, a detailed ultrasound. The specialists' visits are then organized, and parents often need to go home and process the complicated, and sometimes heartbreaking, information they are receiving. “They need time to process the information, to absorb it, to think about it, to understand their own reasoning for the decisions they are going to have to make. Then they come back and talk to us about it again.”
Yang said that the group of specialists participating in the clinic are committed to bringing the most comprehensive care to the expectant mother and her child. They include Chescheir; Harold Collins II, M.D., and Kelly A. Bennett, M.D., from Maternal-Fetal Medicine; John Brock, M.D., from Pediatric Urology; William Walsh, M.D., and Judy Aschner, M.D., from Neonatology; Ann Kavanaugh-McHugh, M.D., from Pediatric Cardiology; and Mark Bliton, Ph.D., of Bioethics.
“It takes a real commitment from all these different specialists to really serve these families in their time of need.”
Yang said it's a true team effort, and wouldn't be possible without the assistance of nurse practitioners Mary Dabrowiak and Renee Jones, and office manager Tracy Perry,
The specialists involved also have a weekly conference, similar to an oncologists' tumor board, where the cases are presented and discussed in a multi-disciplinary setting. “This is especially important for babies that will require decision making for the rest of the pregnancy; decisions like how often to do surveillance, whether more testing is required, and for babies where fetal intervention is needed or the delivery needs to be planned very carefully,” Yang said.
This planning and coordination is especially beneficial for mothers participating in the largest fetal surgery trial in history, the MOMS (Management of Myelomeningocele) study. Vanderbilt joins the University of California at San Francisco and Children's Hospital of Philadelphia in this NIH-funded fetal surgery trial for babies with spina bifida, and Yang is the principal investigator.
The study is designed to test whether repairing the spina bifida before birth is beneficial to the baby, specifically in regard to the development of hydrocephalus. The trial is ongoing and likely will continue another four to five years, Yang said.