Long-term follow-up after surgery for congenital anomalies: A time to complication analysis

Children with congenital anomalies often require surgical intervention. Long-term follow-up guidelines are heterogeneous. Our aims were to 1) determine the time to latest complication after index surgery to tailor our follow-up program, and 2) query family attitudes toward long-term follow-up by our clinic. These efforts are intended to plan future quality improvement work at our institution.

This is a single center retrospective review of patients treated between January 2015- January 2026 with congenital diaphragmatic hernia, congenital pulmonary airway malformation, bronchopulmonary sequestration, choledochal cyst, gastroschisis, omphalocele, intestinal atresia, sacrococcygeal teratoma, and esophageal atresia with tracheoesophageal fistulae. We abstracted age at index operation, complications, their timing, and subsequent operations. An internally developed survey was used to assess potential advantages and disadvantages to long-term follow up.

292 patients met inclusion criteria (55 CDH, 26 CPAM, 14 choledochal cyst,16 BPS, 49 gastroschisis, 15 omphalocele, 57 atresia, 10 SCT, 50 TEF). Median follow-up was 3.5 yrs (range first follow-up after birth hospitalization to 19.9 yrs). Common complications requiring surgery more than one year post-operatively were bowel obstruction (n = 7) and ventral/incisional hernias (n = 4). We observed late recurrence in CDH and SCT. Survey results (n = 52) indicate families believe the potential benefits of long-term surgical follow-up (surveillance, longitudinal care) outweigh the potential disadvantages of follow up (schedule, cost, stress).

Surveillance of anomalies is valuable. For some patients with specific anomalies, parental education and pediatrician oversight may be sufficient. Importantly, families perceive an annual follow-up to be beneficial, underscoring the importance of incorporating family perspectives when building and adopting protocols.