Winter 2006

Clinic Addresses Many Facets of Congenital Anomalies

Through dramatic advances in fetal and neonatal surgery, many babies that years ago would have died shortly after birth can be saved. Often these babies, however, require years of follow-up care from many specialists and subspecialists. Making sure that these children get the proper care can be a daunting task for both physicians and parents.

To ensure that children can get complete care and to make the process less difficult for their parents, physicians, nurses and therapists at UCSF are creating the Congenital Anomalies Clinic.

"Here, we have the opportunity to combine all the necessary specialties in one clinical setting devoted to kids with congenital anomalies," says pediatric surgery nurse practitioner Barbara Bratton. "I'm not aware of any other program nationally to follow kids with so many different anomalies in a multidisciplinary manner."

The idea for the clinic arose out of the needs of UCSF's Fetal Treatment Center. In utero treatments for conditions like congenital diaphragmatic hernia had become very successful, but children continued to need regular monitoring and treatment from a wide variety of specialists for digestive problems, hearing disorders, heart problems and other conditions. Making and getting to appointments with so many specialists in different places was a heavy burden for parents. For some parents, it was difficult to even keep track of which specialists they needed to consult and when.

"A couple of years ago, we decided that we needed to take a much more programmatic approach to care for these kids after they were sent home," Bratton says.

Kerilyn Nobuhara, M.D.

Kerilyn Nobuhara, M.D., started a program in which developmental pediatricians, audiologists, neonatologists, feeding therapists, pediatric nurses and all the families who came to the Fetal Treatment Center would meet at one time in one location. "Physicians were able to say, 'This kid needs an audiologist; this kid needs feeding therapy; this one, pulmonary care,' and to make sure that the families were plugged in and involved in their child's care," Bratton says.

Another benefit of this approach soon became apparent. Parents would meet one another and talk in the waiting room, providing a ready social network of families, all of whom understood the difficulties of caring for children with chronic medical needs. "The clinic ended up becoming an important source of informal social support," Bratton says.

UCSF clinicians realized that such a multidisciplinary clinic was needed not only for kids treated at the Fetal Treatment Center, but also for those with congenital disorders that were treated after birth. "Since it worked out so well [for the Fetal Treatment Center], we decided we needed to expand the model to other kids," Bratton says.

Esophageal atresia, for instance, can require multiple surgeries, including esophageal stretching and other procedures for years after the initial problem is corrected. "These kids have a tough time long term," Bratton says.

The Congenital Anomalies Clinic will offer a place where all the families of kids treated for esophageal atresia and the specialists needed to treat them can come together regularly to efficiently monitor the kids' condition and set the course of future treatments. Bratton hopes that the clinic will host a rolling sequence of subspecialty clinics. "I would like to see us care for kids with CDH one month, esophageal atresia another month, then imperforate anus and so on."

Those involved think that the Congenital Anomalies Clinic may be a model for programs aimed at treating many other disorders with complicated, long-term therapeutic courses.

For more information, contact Barbara Bratton at (415) 476-2538.

Related Information

News Releases

Renowned Children's Hospital Surgeon Lauded by AAP, Surgeons
Renowned fetal surgeon Michael R. Harrison, M.D., was honored this fall by two of the nation's most prestigious medical professional organizations, the American Academy of Pediatrics and the American College of Surgeons, for his contributions to both fields.

Bloomingdale's Opening Raises Over $200,000 for UCSF Benioff Children's Hospital
The Grand Opening Gala for Bloomingdales in San Francisco garnered more than $200,000 in donations for UCSF Benioff Children's Hospital. The funds will help children suffering from life-threatening illnesses.