At Children’s, a multidisciplinary team cares for heart patients with swallowing and feeding problems. (Stock photo)
Within days of being born with hypoplastic left heart syndrome, or HLHS, in early 2025, “James” underwent life-saving surgery to reconfigure blood flow so the right ventricle of his underdeveloped heart could pump blood to his little body. Unsurprisingly, the newborn had trouble swallowing and building the endurance needed to feed by mouth. In swooped skilled clinicians from the Dysphagia Clinic at Children’s of Alabama, who worked with James and his parents to determine the safest, most optimal feeding strategy for him after discharge.
The baby—now heading toward his first birthday and doing well—exemplifies the value of the Dysphagia Clinic’s multidisciplinary approach. The clinic previously existed in other capacities at Children’s but coalesced in January 2025 after the arrival of physician assistant Alex Clifton, PA-C, who runs the once-weekly, full-day clinic, seeing about 10 patients each week. Clifton works closely with speech language pathologist Kristen Kirkland, MCD, CCC-SLP, along with several other speech clinicians who rotate to cover the clinic.
Leaders with the Children’s of Alabama Aerodigestive Program created the Dysphagia Clinic to address the feeding and nutrition needs of babies with congenital heart disease as well as babies followed within the Aerodigestive Program who need close support from the gastroenterology, nutrition and speech therapy teams. In the clinic, patients receive medical and speech therapy perspectives, along with nutrition support. Kelly Trumbull, a registered dietitian with the Children’s Clinical Nutrition team, is embedded in the clinic.
The cardiac portion of the program was designed to address the previous gap of multidisciplinary, outpatient feeding care for babies with congenital heart disease. The team cares for these patients using the pediatric feeding disorder framework, addressing medical, nutritional, skill and psychosocial needs. Cardiologists, pulmonologists, otolaryngologists and pediatric surgeons collaborate with the clinic on this effort.
“We long wanted to fill a local void in this type of care for these heart patients,” said Rachel Kassel, M.D., Ph.D., a pediatric gastroenterologist with the Aerodigestive Program. “Buy-in from the University of Alabama at Birmingham (UAB) Department of Pediatrics, the Children’s Hearing and Speech team and the Children’s Nutrition team—paired with having a team of passionate individuals in the Dysphagia Clinic—has improved outpatient feeding and nutrition care for babies with complex congenital heart disease.”
Congenital heart disease encompasses a set of conditions that greatly predispose a baby to feeding and swallowing difficulties. These problems occur in pediatric heart patients in several ways: either by compressing the esophagus or vessels; through nerve damage; or from rapid breathing and fatigue in infants that can disrupt the coordination of sucking, swallowing and breathing. Their cases can also be complicated by vocal cord paralysis, ECMO treatment or the need for intubation.
Clifton and Kirkland estimate that perhaps 70% of pediatric cardiac surgery patients deal with some component of feeding difficulty or aspiration. “Many pediatric GI programs in outlying communities refer to us, so we’re often the last step in the region for these complex kids,” Clifton said.
Clifton also sees patients in the Children’s GI clinic, addressing challenges with formula tolerance, advancing diet, and any other feeding issues. Additionally, she refers patients to the aerodigestive team, which treats children with overlapping problems involving the airway, lungs and upper digestive tract. In the Dysphagia Clinic, Clifton and Kirkland are often joined by nutrition specialists and other speech clinicians, and they also consult with social work and lactation professionals as needed.
“It’s helpful to have multiple disciplines looking at a child with complex medical problems,” Clifton said. “Every kiddo is different.”
Kirkland works closely with patients’ parents and caregivers to help them look for feeding stress cues in infants as well as signs of aspiration. She helps align the child’s individual challenges—which can also include aversion to oral feeding—with the needs of the family, often employing feeding tubes to fill the gap in nourishment. Other interventions can involve thickening formula, adjusting feeding utensils or bottles, and prescribing medications to help with reflux, nausea or appetite.
“Some babies associate eating with negative past experiences such as frequent emesis or overall GI discomfort or intolerance,” Kirkland explained. “And malnutrition alone makes them less likely to eat, because they tend to fatigue earlier.”
All of these issues can affect a patient’s ability to lead a normal life, even down the road. But Kirkland and Clifton are doing their best to smooth the path forward.
“Feeding is a very emotional experience for a lot of families. It’s also something that families just expect to occur—that everyone can eat and swallow and enjoy those experiences,” Kirkland said. “While they’re inpatient, we’re trying to get them home, and in clinic, we’re focused on the long-term goals of how this will shape their future.”
The Dysphagia Clinic strongly complements and reinforces the care these cardiac patients are getting at Children’s, Clifton said. “We’re looking at the big picture,” she said, “and making sure they get all the resources they need—the individual parts that might otherwise get forgotten or overlooked.”
No Comments