‘The best decision we ever made’: Bridging the gap for Arya’s esophageal atresia

When Teja and Naveen learned last year that their daughter, Arya, would be born with long-gap esophageal atresia (EA), they did what many parents do: They took to the internet in search of more information. There, they learned that long-gap EA is a rare but serious condition in which a baby’s esophagus develops in two separate segments that don’t connect, leading to breathing, drinking, and eating difficulties.

Learning about the Foker process

Because the ends of the esophagus are too far apart in long-gap EA to be connected easily with surgery, treatment often involves a procedure known as the Foker process. In this innovative approach, a surgeon makes a small incision in the child’s back and then places several sutures on the upper and lower ends of their esophagus. These tiny stitches connect the ends to a traction system on the outside of the child’s body.

While it can be very effective, the Foker process is also a significant procedure that requires a long hospital stay. Because excessive motion could break or pull out the sutures, babies undergoing the Foker process must stay in the intensive care unit (ICU) on a ventilator and take medication to help them stay still. Over the next few weeks, clinicians gradually increase the tension on the sutures, which causes each end of the esophagus to grow until the surgeon can attach the two ends.

The couple, who live in Texas, were concerned about the length of the process and the need for intubation. “Our initial surgeon was somewhat vague about what he would do,” says Teja. “We were hesitant to proceed.”

A minimally invasive option

During their search for answers, they found family support groups — and a woman named Selina De Leon. Her daughter Devina was also born with long-gap EA and had recently undergone a new minimally invasive version of the Folker process performed by Dr. Benjamin Zendejas-Mummert in the Esophageal and Airway Treatment (EAT) Center at Boston Children’s Hospital. “She told us Devina had only been intubated for three days,” remembers Teja. Intrigued, the couple reached out to the center for more information.

But when the family spoke with the EAT Center’s program director, nurse Dori Gallagher, and the rest of the team, they found there was a catch: There is currently no way to know whether a baby is eligible for the minimally invasive version of the Foker process until surgery has already begun. Although the family was disappointed, the explanation made sense. Arya was a little over 3 months old, and the COVID-19 pandemic showed no signs of ebbing. Nevertheless, they decided to forge ahead and travel to Boston in August 2020.

Confidence and compassion

Upon their arrival they met Dr. Zendejas-Mummert. “As soon as we talked with him, we knew he was the surgeon we needed,” says Naveen. “He took the time to explain everything to us and told us that he’s a father too and would treat Arya like his own child. His confidence gave us confidence in him.” Their comfort grew once Arya was in the operating room and Dr. Zendejas-Mummert confirmed that she was a candidate for the minimally invasive Foker process.

The procedures were a success. All told, Arya spent about six weeks in Boston. “We could have returned home earlier but we didn’t want to travel back and forth for follow-ups because of the pandemic,” says her mom. In addition to Dr. Zendejas-Mummert, the family says they’re grateful for the large team of nurses, social workers, and other clinicians who cared for Arya during their stay. “They wanted us to hold her and just enjoy being her parents,” says Teja.

Today, Arya is a happy baby who’s growing and eating just like any 10-month-old. She doesn’t need a feeding tube and, to her parents’ delight, doesn’t even have a surgical scar. Now, like her friend Selina, Teja is sharing her experience with other families on social media. “Every baby is different,” she says. “But for us, coming to Boston Children’s was the best decision we made for our daughter.”

The minimally invasive Foker process: How is it different?

The minimally invasive Foker process involves very small incisions on a child’s back and uses minimally invasive instruments to place traction sutures on each end of the esophagus and secure them around one of the ribs. This creates a traction system inside the child’s body, reducing the risk of tearing or breaking it. Surgeons tighten these sutures every week until the two ends of the esophagus are close enough to attach to each other. The minimally invasive approach appears to be as safe and effective as the traditional Foker process, but requires less time spent in the ICU and fewer pain medications and sedatives.

Learn more about the Esophageal and Airway Treatment Center.