Esophageal Atresia and Tracheoesophageal Fistula

Nothing holds back Gunnar Rambo. At 8 years old, his main concerns are playing basketball, baseball and spending time with his friends and family. His story is more complex than what can be seen on the surface, however, as he has been fighting a battle for his health since he was born. Gunnar was born on September 1, 2016 at Eliza Coffee Memorial Hospital in Florence, Alabama. He began having breathing problems right after he was born and progressively got worse. His doctors thought he may have esophageal atresia and tracheoesophageal fistula (EA/TEF). They transferred him to Children’s of Alabama at less than a day old and his stomach swelled up overnight. Not even 24 hours later, he received a G-tube. Children’s confirmed the diagnosis of EA and TEF. Dr. Mike Chen performed surgery on Gunnar to connect his esophagus to his stomach and clipped his esophagus away from his airway. After surgery, Gunnar experienced tracheomalacia, which is a collapse of the airway that occurs from a weak spot in the airway. Gunnar was on the ventilator for a couple weeks and his strength wasn’t improving, so his medical team inserted a tracheostomy tube into his neck to allow air to fill his lungs.

The next few months that Gunnar spent at Children’s included many bumps in the road as he continued to heal and grow. His parents received training on how to take care of his G-tube and trach and how to set up and run his equipment at night. Gunnar spent his first Christmas at Children’s in the NICU. Jennifer Rambo, Gunnar’s mom, said the nurses at Children’s encouraged her and her husband to go home for Christmas to be with their other two children. The nurses promised they would make Gunnar’s first Christmas special. “The nurses sent us pictures of Gunnar with Santa and Mrs. Claus and they brought him presents from Children's Sugar Plum Shop program,” Jennifer said. “Knowing Gunnar was getting to experience his first Christmas with these wonderful nurses eased the burden that we weren’t able to be with him.”

A couple months after Christmas, Gunnar finally was discharged from Children’s at six months old. He still visited Children’s for follow-up visits up until he was 2 years old. After his doctor took his trach out and it wasn’t healing properly, he ended up being transferred to Boston Children’s Hospital where he received surgeries to keep his airway from collapsing. The medical team there determined that he also had laryngomalacia, and he received surgery to help repair that. From the time he was 2 years old until now, Gunnar and his family continued to go back to Boston for different surgeries and follow-up visits, with time in between each surgery for him to heal. At 7 years old, his medical team removed his trach and he has been doing very well since.

Jennifer said her family viewed the doctors, nurses, social workers, nurse practitioners and all other medical personnel who treated Gunnar at Children’s as more than just a medical team–they viewed them as family. “If it weren’t for the nurses at the NICU, I don’t know how we would have made it,” Jennifer said. “They gave the best medical and personal advice as we went through a difficult time.”

“Thanks to Dr. Chen and the medical team at Children’s, Gunnar has excelled with eating regular foods by mouth more than most kids who have this disorder.” Jennifer said. “There’s nothing he can’t eat.”

Faith and support from the community was paramount for the Rambo family as they journeyed through Gunnar’s health battles. Jennifer said that their community united together to have several fundraisers to raise money for Gunnar. They sold “team Gunnar” T-shirts, bracelets and plates of barbecue, and they hosted a car show which collectively raised over $80,000.

Gunnar will continue to go to the dentist and the ENT at Children’s of Alabama for the holes he has in both of his eardrums due to the tubes he had when he was younger. Most kids with Gunnar’s condition still have to receive esophageal dilations, but Gunnar hasn’t had dilations since he was 4 years old because his esophagus has held up very well. Gunnar has experienced more medical intervention than most people at 8 years old, but he is thriving. He is a straight-A student, enjoys playing travel baseball, loves superheroes and wrestling, and cheers for his favorite team, Alabama Crimson Tide. Nothing can stop Gunnar from living his best life.