by Zach Read - firstname.lastname@example.org
Five years ago, Tricia and Marlon Estes, of Wake Forest, welcomed a baby boy. He arrived three weeks ahead of his due date. They named him Trilon, combining their first names.
Tricia’s pregnancy had been routine; during every appointment and milestone along the way, both she and Trilon appeared perfectly healthy. Even though he arrived a bit early, he was a good weight – five pounds, thirteen ounces – and they had no reason to suspect complications.
But hours after he was delivered, Tricia and Marlon noticed that Trilon wasn’t feeding the way he should – he needed frequent suctioning.
“He couldn’t swallow,” remembers Tricia. “When I breastfed him the milk came out of his mouth and nose.”
Worried, Tricia called the nurse, who evaluated Trilon and immediately whisked him away for an X-ray. The results revealed a rare congenital condition called esophageal atresia.
“We were shocked,” says Tricia. “It’s not something that we prepared for or even considered. I’ve always taken care of myself, and I felt I’d done everything right during the pregnancy, but that didn’t matter – we still could have lost him.”
Esophageal atresia occurs when the esophagus does not form a complete tube and connect with the stomach. It is an emergency health condition because the infant cannot take food. Before surgical techniques existed for esophageal atresia, which occurs in 1 in 4,000 births in the United States today, it was fatal.
Trilon was quickly transported to UNC Children’s, where pediatric surgeon Tim Weiner and his team surgically inserted a feeding tube directly into his stomach. Further evaluation to determine the steps needed to surgically correct the condition was required.
The next several days were excruciating for the parents. In the hospital, as Trilon was cared for in the Newborn Critical Care Center, Marlon read information about esophageal atresia provided by Trilon’s care team. He also researched plenty on his own, educating himself on the different forms of the condition and what surgeries Trilon may need. He even reviewed online forums to get a sense of the challenges families face.
“It was scary,” Marlon says. “I didn’t tell Tricia everything I read. We thought we would be taking Trilon home after three days. Instead it took us three months. We just prayed that he wouldn’t have to go through dozens of surgeries.”
A Rare Form of a Rare Disease
Dr. Weiner performed his first surgeries on esophageal atresia as a chief resident in general surgery at UNC before further developing his skills during a two-year pediatric surgical fellowship at Children’s Hospital of Pittsburgh.
“Esophageal atresia is such an unusual condition, and it was an even more unusual form of that condition for Trilon,” says Dr. Weiner, professor of surgery at the UNC School of Medicine.
Annually, UNC Children’s receives roughly 20 cases of esophageal atresia from around North Carolina. The usual form of the condition occurs in approximately 85 percent of cases and includes an anomalous connection between the upper portion of the esophagus and the trachea (a trachea-esophageal fistula) and no connection between the upper and lower esophagus (esophageal atresia). Trilon had an even less common form of the condition, known as pure esophageal atresia, which occurs in only 5 to 8 percent of the cases.
“The two ends were blind, meaning they hadn’t formed the normal complete tube and there was not the typical connection to the trachea,” says Dr. Weiner. “In addition, the two ends are especially far apart in pure atresia, which presents new and complex technical challenges. So, Trilon had a rare form of an already rare condition.”
Immediate surgical operation was not an option – connecting the two tubes had to be done gradually and would take months. Over time, with more feedings through the feeding tube inserted when Trion had arrived, the lower end of the esophagus began stretching.
“We also used instruments through the mouth and in the upper esophagus to stretch it periodically over the course of three months, eventually bringing the two blind ends of the esophagus close enough to where we thought we could attach them surgically,” says Dr. Weiner.
By December 2010, the tubes had stretched enough for the team to surgically open Trilon’s chest and bring them together. The procedure was a success: Trilon went home in early January 2011 and continued feeding with a tube until his esophagus and stomach had grown and the feeding tube could be removed.
But his medical challenges weren’t over. With esophageal atresia often comes a series of other medical anomalies. Dr. Richard Sutherland, associate professor of urology and director of pediatric urology at UNC, discovered a subtle condition that indicated a fistula between Trilon’s rectum and bladder. More often this presents as incomplete formation of the rectum and is obvious at birth, but Trilon’s case, again, was even more unusual than the normal condition.
Dr. Weiner was preparing to go to Afghanistan for a Navy deployment when the fistula was discovered, so the team elected to send Trilon to a specialized center, Cincinnati Children’s Hospital, which had seen something similar to Trilon’s in only two other cases among the thousands they’ve taken care of.
“He had two rare conditions -- and almost the rarest form of each,” says Dr. Weiner. “I don’t know if another kid like Trilon exists, with his combination of multiple congenital atresias and fistulas at both ends of his GI tract. He’s unique. But he has done beautifully, and today he’s like any other kid: happy, growing and eating normally.”
They Touched Our Lives
Trilon’s medical care at UNC has included procedures from and visits with many pediatric specialties: surgery, urology, gastroenterology, and orthopedics, where Dr. Jennifer Patterson performed surgery on Trilon’s right thumb, which was missing a tendon, another health complication that accompanies esophageal atresia.
Throughout all of it, the Esteses have felt close to the physicians and nurses they’ve met. When Trilon turned one, Tricia and Marlon had a birthday party for him at their home in Wake Forest. They invited two nurses who were integral to Trilon’s development during his first three months, Jenna Brogdon and Sandy Taylor.
“They touched our lives,” says Marlon. “Without them, who knows what would have happened? We were able to stay close to home to receive great care – they were awesome for us.”
Although the Esteses no longer worry about Trilon’s development post-esophageal atresia, they still have medical questions and sometimes need referrals for other complications that have arisen. Tricia never hesitates to contact Dr. Weiner.
“I always hear back from him right away,” she says. “There’s been a personal touch from him and all the people who have cared for Trilon.”
Dr. Weiner, meanwhile, credits Tricia and Marlon for how they interacted with Trilon’s care team during challenging times.
“They’re a special family,” he says. “Parents, understandably, get very protective of their kids. They were able to strike the balance of not being overwhelmed by Trilon’s challenges while also participating in the care plan, following the discussion and understanding the needs for big procedures, asking the right questions, and working with the whole team. They understood, they followed, and then they provided a lot of the bedside support we needed as a team and he needed as a patient.”
Brought Closer Together
Tricia and Marlon worried that the amount of time Trilon spent in the hospital so early in his life would impact his personality, perhaps making him quieter and more reserved. As he turns five on Oct. 5, they can safely say that hasn’t been the case.
“He gravitates to people,” Tricia says. “He’s incredibly social.”
Nor have Trilon’s medical challenges slowed him down physically. Both Tricia and Marlon are personal trainers in the Raleigh area – among Marlon’s clients is NBA power forward David West – and they’re committed to being active together as a family and encouraging physical activity in Trilon.
“We don’t like to sit around the house,” says Marlon, who played wide receiver at Wake Forest and professional football in the Canadian Football League and Arena Football League. “We like to be out doing something, as a family, whether it’s playing soccer or baseball.”
Trilon’s interest in baseball comes from Tricia and her side of the family – Tricia’s father and brothers all excelled at the sport, playing in college. When Trilon was three years old, because of the surgery on his right thumb, he was forced to wear a cast all the way up his arm for five weeks, which helped him learn to throw with his left hand.
“After he’s done with daycare or school, I’m almost always throwing the baseball with him in the front yard,” says Tricia. “We’re amazed at how strong he is throwing the ball and how well he hits it.”
As parents, their experiences with Trilon have shaped how they spend their time and strengthened them as a family. Before Trilon was born, Tricia didn’t hesitate to work long hours. Today, she starts her work day early so she can pick him up from daycare or school and spend the rest of the afternoon with him.
“What we went through has determined everything I do in terms of parenting and my time,” she says. “I try to do as much as I can with him. It made me realize the importance of spending more time with him and how precious it is.”
Marlon explains that while he and Tricia were always close, Trilon’s challenges – and how he’s overcome them – have changed them as a family.
“It was really frightening,” Marlon reflects. “But watching him gaves us hope. We knew we shouldn’t complain about anything because of what this little guy had been through, and today we have an understanding that he comes first and whatever we need is secondary. The experience has brought us closer together as a family.”