Experiences of a parent support group with the long-term consequences of esophageal atresia.

Purpose: The aim of this study was to study long-term effects of esophageal atresia based on data from the world's largest parent support group.

Methods: A questionnaire was completed by 128 former patients, now aged 10 to 34 years (median, 14 years), who were all members of the support group.

Results: Postoperative bougienage was performed in 70% of patients. The most frequently associated anomalies were skeletal (44%), with 18% of patients having a winged scapula. In 30% of patients, food became trapped; this entrapment continues, although with decreasing frequency. In 38% of patients, recurrent episodes of food lodging in the esophagus lasted only a few years, whereas 32% of patients never experienced any swallowing problems. The foods most often trapped were apples, meat, and bread. Most trapped food is removed by the induction of vomiting, without medical help. Unusual findings of this study were the avoidance of chocolate and sweets by 9% of patients and the habit of eating unorthodox food combinations in 13% of patients. Forty-six percent of patients have gastroesophageal reflux, and 7% have Barrett's esophagus. The most successful antireflux prevention was abstinence from eating late in the evening. Fundoplication was performed in 16% of patients; however, only 25% of these fundoplication operations were successful immediately. Eighty percent of patients had more than 4 lung infections or bronchitis episodes per year. Forty-four percent make noises, such as wheezing or whistling, when breathing or straining. Eighty-eight percent are of normal height, and 70% are of normal weight. Eighty-nine percent of patients attended regular schools, and 52% were above-average students.

Conclusions: Very few pediatric surgeons have had the opportunity to follow into adulthood such a large group of patients with esophageal atresia. Patients themselves feel lost when they undergo the transition from pediatric to adult medical treatment. A support group is able to provide an information database, which helps overcome the isolation because of the rareness of the disease and the separation of patients into different medical specialties. Surgeons should be aware of the difficulties that patients and parents face in later life and should seek cooperation with a support group. J Pediatr Surg 36:605-610.