Born a Fighter, Levi Receives Comprehensive Care at Cincinnati Children’s for his Complex Medical Needs

Since his birth at just 25 weeks gestation, Levi has faced challenges few could imagine. The 3-year-old has spent more than 550 days in the hospital, including the first 247 days of his life in the neonatal intensive care unit (NICU), and he’s undergone more than 30 surgeries.

But Levi is fearless and strong-willed, according to his parents, Chelsae and Tyler Stamper. Despite his complex medical needs, Levi is an active little boy who loves digging in the dirt, playing with trucks and riding his toddler-sized four-wheeler on warm summer days.

“Levi is all boy, and he is wild, fearless and a spitfire,” said Chelsae. “But he’s also smart, handsome and has the kindest heart.”

An Early Birth with Challenging Diagnoses

Levi was born in May 2020 at the University of Kentucky weighing just 1 pound and 6 ounces. There, he spent the first seven months of his life in the NICU.

Shortly after Levi’s birth, doctors at UK discovered he had esophageal atresia, a birth defect in which the esophagus (the tube that carries food and liquid from the throat to the stomach) doesn’t attach to the stomach. In addition, he had tracheoesophageal fistula, an abnormal connection between the trachea (the tube that connects the windpipe to the lungs) and the esophagus.

“There are many types of esophageal atresia, and Levi was diagnosed with the long gap type,” Chelsae explained. “He essentially had no esophagus at all, with a gap that was seven rib spaces long.”

Further testing revealed that Levi’s esophageal atresia was caused by a genetic disorder called Feingold syndrome—a rare condition with fewer than 1,000 known cases in the world. He had fused fingers, which doctors were able to separate through surgery. Doctors also found cysts on his brain. 

UK Surgeons attempted to repair Levi’s esophagus, but the procedure failed because of the complexity of his condition. Instead, they constructed a “spit fistula,” routing the top of the esophagus to an opening in Levi’s neck. That helps prevent saliva and other secretions from draining into the lungs, with hopes of preventing aspiration. Despite this, he still struggled to breathe without a CPAP, or continuous positive airway pressure.

Seeking Advanced, Coordinated Care at Cincinnati Children’s

Upon the recommendation of Levi’s UK medical team, he was transferred by ambulance to the NICU at Cincinnati Children’s when he was 7 months old. 

Levi’s care was managed by a team from Cincinnati Children’s Aerodigestive and Esophageal Center, where children receive treatment for a range of complex esophageal and airway disorders.

The Aerodigestive and Esophageal Center’s multidisciplinary team includes pulmonologists, gastroenterologists, otolaryngologists (ear, nose and throat doctors, or ENTs), general surgeons, speech therapists and respiratory therapists. The center is internationally known for its team approach to caring for children with even the most complex airway and esophageal disorders. All of the center’s specialists, social workers and nurse practitioners meet weekly to review each child’s case. Together, they develop a comprehensive care plan that meets each child’s unique needs.

“Cincinnati Children's provides multidisciplinary care in a phenomenal way by bringing the right people together at the right time,” said pulmonologist Gregory Burg, MD. “We have protected time together to discuss what’s best for each child. That coordinated effort leads to a better patient experience.”

Finding Answers and Solutions

After Levi was admitted to the NICU at Cincinnati Children’s, doctors discovered that he had tracheomalacia. This condition caused his airway to collapse every time he took a breath.

“When the trachea collapses, it is difficult to move air and mucus effectively,” explained Dr. Burg. “That’s why Levi was struggling to breathe.”

Surgeons performed four procedures to repair Levi’s airway, and he finally went home for the first time. He was 8 months old.

Chelsae and Tyler were thrilled to have Levi home, but he still struggled to breathe. They took him back to Cincinnati Children’s, where he was diagnosed with sleep apnea and put on oxygen support at night.

In October 2021, a team in the Aerodigestive and Esophageal Center repaired Levi’s esophagus through a procedure called colonic interposition. This involves removing a section of his colon and placing it between the throat and stomach to create a new swallowing tube. Despite the procedure, however, Levi is still unable to swallow because of neurological complications.

For now, Levi still needs a feeding tube. His parents hope someday he will be able to eat by mouth.

Doctors at Cincinnati Children’s also discovered that Levi has a Chiari malformation, a condition in which the lower portion of the brain pushes through an opening at the base of the skull and into the spinal cord. He had one surgery to treat that in May 2022, along with follow-up surgeries, as needed. Tethered spinal cord surgery is planned for next year. 

A New Way to Breathe

It’s not unusual for children born prematurely to have underdeveloped lungs. In Levi’s case, the esophageal abnormalities further complicated his development. 

Despite having many surgeries, taking medications and using other interventions, Levi continued struggling with chronic aspiration, making him sick frequently. In September 2022, Levi underwent a tracheostomy placement—a procedure in which surgeons create an opening in the windpipe from outside the neck. A tube inserted through the opening allows Levi to breathe. 

“It got to the point where Levi had been in the hospital more than he was at home because he was just so sick,” said Dr. Burg. “We typically place trachs for one of two reasons: that the child has upper airway obstruction or that the child needs long-term ventilation. Levi didn’t clearly fall into either of those categories. It was challenging for me to consider a trach for him, but he was definitely not thriving. We thought a trach may allow for better clearance of secretions and treatment of aspiration.

“As we approached the possibility and talked it over with the family, they were very much on board with that [plan],” Dr. Burg continued. “Now, he seems to be thriving with the trach, and his family is managing it well.”

Chelsae and Tyler have been pleased with the tracheostomy results. Levi hasn’t been admitted to the hospital for the last six months—the longest stretch he’s ever been at home. And while he still needs to rest during the day, Levi is active and enjoys a better life. He even started walking several months after the surgery.

“You can tell Levi feels better, and he doesn’t bother the trach—he never pulls it out,” Chelsae said. “He can breathe better, and he doesn’t need oxygen anymore. He’s just on the ventilator at night and gets the air reserve his lungs need for the day. It’s not perfect. He still has times he needs to rest and can't be as active as other kids. But it’s definitely helped him do much more than before.” 

Uniquely Levi

Levi’s life may have gotten off to a bumpy start, but now, “He is your average child, just with some accommodations,” Chelsae said. “He's so sweet, and he loves everyone. He has a really sweet personality.”

Chelsae is grateful for the care Levi has received at Cincinnati Children’s. Many of the doctors and nurses have become like family to them. 

“Overall, our experience at Cincinnati Children's has been really good,” Chelsae said. “So many of them truly care for Levi. They’re not coming to work and being robots doing their job. I’m able to have conversations about Levi, and I know that they love him and the other kids they care for.” 

Chelsae recently wrote and published “Uniquely Me,” a children’s book about Levi and his experiences. The story answers questions about who Levi is as a person and why he needs certain medical accommodations.

“I wrote it to teach other kids and adults about inclusion,” said Chelsae, who recently gave Dr. Burg an autographed copy. “I try to advocate and spread the word of inclusion as much as I can because nobody ever thinks about it until it happens to them. And I want other families like ours to know that they are not alone. There are so many people out there who know exactly what you're dealing with, even if it doesn't feel like it at the time.”

(Published November 2023)