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. …
Noah Hamm has escaped death more times than his mother Danielle can count. And he’s only 3.
Since Noah was born there have been three constants in his life: Noah’s knack for near misses, his family and a neonatologist/pulmonologist who’s always there with the right care for Noah … and the right words for his family.
“I tell Larry [Dr. Larry Rhein] he’s our George Bailey,” says Noah’s mom Danielle.
Larry gave me hope. Even when things were bad, I always felt better when Larry was there.
Noah was a 29-week twin when Danielle’s water broke prematurely. “The only condition I thought I had to worry about after having a STAT C-section was prematurity,” she recalls.
Six hours after Noah and his sister Dakotah were born at Brigham and Women’s Hospital, specialists told Danielle and her husband Brendan their newborn son needed surgery for esophageal atresia, a gap in his esophagus, and tracheoesophageal fistula, an abnormal connection between his esophagus and trachea.
Nurses brought Noah to Danielle to let her hold her son before transferring him to Boston Children’s Hospital. “They weren’t sure he’d make it through the first night,” says Danielle.
But Noah did make it through the night and through his first surgery, when Dr. Terry Buchmiller, a surgeon at Boston Children’s, repaired Noah’s tracheaesophageal fistula and placed a G-tube to deliver nutrition directly to Noah’s stomach.
A few days after Noah’s first surgery, he was was diagnosed with patent ductus arteriosus; the path between his pulmonary and aortic valves did not close after birth as it should have.
Two weeks later, Danielle could see that Noah didn’t look quite right. She grabbed Dr. Anne Hansen, medical director of the Boston Children’s Neonatal Intensive Care Unit (NICU), and doctors discovered the hole in Noah’s heart had blown open. He needed emergency heart surgery.
Rhein made his first appearance in Noah’s life that night. …
Marissa Waite lives in the smallest town in Massachusetts, but she has a big story to tell. When her mother Vicky was pregnant with Marissa 13 years ago, an ultrasound detected esophageal atresia (EA), a condition where the esophagus isn’t connected to the stomach.
Vicky was admitted to Brigham and Women’s Hospital for the remainder of her pregnancy. “I’m a take-charge kind of person. When I was pregnant, I thought, ‘I’ll make all the decisions for my baby.’ But when complications arose, I realized I couldn’t make these kinds of decisions alone,” she says.
At that point, Marissa’s care team was born. …
Eleven-year-old Ryan Page is a budding trombone player whose favorite foods include candy, popcorn and hot dogs. “Ryan loves any choking hazard,” jokes his mother Tracy.
When Ryan was born, few would have predicted he would be able tolerate these foods or master the trombone. “His doctors told us he had the longest gap they had ever seen in a baby with esophageal atresia,” recalls Tracy. Ryan was born with a nearly 4-inch gap between the top and bottom parts of his esophagus.
“This is a kid whose predestination based on standard therapy was chronic aspiration (breathing food, liquid or vomit into the airway), chronic lung disease and multiple operations throughout his life. Instead, he’s a normal kid. That’s the miracle of the Foker process,” says Dr. Rusty Jennings, director of Boston Children’s Hospital’s Esophageal Atresia Treatment Center. …