Will a diagnosis of esophageal atresia affect my child’s weight? Are recurrent respiratory infections normal? How long should my child stay on proton-pump inhibitors?
As the patient coordinator for the Esophageal and Airway Treatment Center at Boston Children’s Hospital, Dori Gallagher, RN, fields questions like these every day from patients around the world concerned about their children with esophageal atresia. In this condition, a baby is born without part of the esophagus (the tube that connects the mouth to the stomach). Instead of forming a tube between the mouth and the stomach, the esophagus grows in two separate segments that do not connect. Without a working esophagus, it’s impossible to receive enough nutrition by mouth. Babies with esophageal atresia are also more prone to infections like pneumonia and conditions such as acid reflux.
Fortunately, esophageal atresia is usually treatable — but successful surgical repair doesn’t mark the end of care for this condition. Here, Dori and Dr. Michael Manfredi, the center’s co-director, dispel some common myths about esophageal atresia.
My child is smaller than other kids their age because of esophageal atresia: Fact or fiction?
FICTION. Kids with esophageal atresia should have normal weight gain and achieve normal growth and height. “If your child is on the smaller side, we need to know why and not just assume that it’s because of esophageal atresia,” says Dr. Manfredi. “In many cases, it’s because they’re not actually taking in enough calories.” A dietician or feeding therapist can provide guidance.
Kids with esophageal atresia may need long-term treatment with proton-pump inhibitors (PPIs): Fact or fiction?
FACT. Children with esophageal atresia are at risk for inflammation, called esophagitis, due to acid reflux. Chronic inflammation can lead to Barrett’s esophagus, which can increase the risk of developing esophageal cancer later in life. Outcomes from Boston Children’s suggest that a good percentage of esophageal atresia patients have biopsy-proven esophagitis. “We don’t want kids on PPIs if they don’t have to be, but we also don’t want kids to have chronic inflammation,” explains Dr. Manfredi.
Children can have still have reflux even if they don’t have symptoms: Fact or fiction?
FACT. Because kids with esophageal atresia tend to have high pain thresholds, they may have become accustomed to symptoms or sensations that aren’t ‘normal.’ Although they may not feel discomfort from reflux the way a healthy adult would, that’s not an indication that these children aren’t experiencing symptoms.
Frequent respiratory infections and pneumonia are a normal part of life for kids with esophageal atresia: Fact or fiction?
FICTION. Everyone gets sick, but if your child is on antibiotics several times a year, that’s not normal. “The expectation for these kids is to have as normal and as healthy a life as possible,” says Dr. Manfredi. Frequent respiratory problems could also be a sign of a related airway condition called tracheomalacia and require evaluation.
Routine follow-up appointments aren’t necessary for children who have undergone esophageal atresia repair. Fact or fiction?
FICTION. Even children whose esophageal atresia was repaired years ago should have a baseline endoscopy to check for esophagitis, as well as an airway evaluation to see if they have any evidence of tracheomalacia. “We typically do our first endoscopy one year after a repair,” explains Dr. Manfredi. “Based on those findings, we’ll decide whether we need to do another in a year or two.”