When newborns need surgery because of rare birth anomalies, the conditions themselves and the aftereffects of surgery often threaten health and well-being long into adulthood.
Pediatric nurse practitioner Barbara Bratton (MS ’88) understands the threats all too well. The clinical coordinator for the UCSF LIFE (Long-term Infant-to-adult Follow-up and Evaluation) Clinic, Bratton helps children and their families cope with everything from neurodevelopmental delays and respiratory and nutritional problems through hearing loss and social isolation.
The LIFE Clinic was originally part of a research project that looked at long-term quality-of-life issues for survivors of fetal surgery for congenital diaphragmatic hernia (CDH) – a condition in which a hole in the diaphragm allows abdominal organs to move into the chest and prevent the lungs from developing normally. Over time, however, the clinic has evolved into one of the first in the country dedicated to long-term, interdisciplinary follow-up care for children born with a range of rare anomalies.
“We would see the same social and medical issues over and over again, so it made sense to think and talk about these issues early and follow people long-term,” says Bratton about the clinic’s evolution. “Also, because these children often have multiple comorbidities, we wanted to make multiple specialists available, including pulmonary and GI [gastrointestinal] physicians, social workers, dietitians and feeding therapists.”