Stories about: esophageal atresia

Harper’s bright future after care for esophageal atresia

Harper smiles at her appointment for esophageal atresia
PHOTOS: MICHAEL GODERRE/BOSTON CHILDREN’S HOSPITAL

At age 4, Harper Robinson doesn’t really remember most of the clinicians who helped change her life — but that doesn’t stop her from greeting Dr. Russell Jennings with a big smile at a recent appointment. “Whenever Harper had surgery, he would cut her dressings into the shape of a heart,” says her mom, Jessica, of Jennings, surgical director of the Esophageal and Airway Treatment (EAT) Center at Boston Children’s Hospital.

Read Full Story

Esophageal atresia: Sorting fact from fiction

esophageal atresia

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.

Read Full Story

A salute to Noah’s heroes

premature-twins

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.

Read Full Story

Marissa’s story: “Esophageal atresia is never going to define me”

10403713_10204937045012353_2613035753500070747_nMarissa 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.

Read Full Story