Watching your baby struggle to eat can be heartbreaking. The daily challenge of offering food only to have it rejected by an unhappy crying child leaves parents frustrated and frightened, all the more so when their child has Down syndrome.
Carolyn Ross, professor in the Washington State University School of Food Science, knows the difficulty firsthand.
“In the beginning, my son Isaac got very annoyed while eating and expressed that with his behavior,” she says. “As the gatekeepers of our child’s eating experience, it can be very stressful trying to figure everything out.”
Ross, who specializes in the chemical and physical analysis of food, had no training in child feeding but could see that her son with Down syndrome was handling food differently than his two older sisters had.
“If a child’s unhappy, we immediately tend to think it’s taste or flavor, but there’s also the sensory input feeling of it and how it feels on the lips or in their hands,” she says. “There are a lot of things that go into the eating experience, including a comfortable high chair.”
Wading through online anecdotal information and scientific literature in 2012, Ross learned that children with Down syndrome have a smaller and narrower jaw, smaller mouth cavity, and more dental problems than typically developing children.
“At that time, however, there was very little information about how their anatomy influences what they eat and how can we use that information to start them on their texture journey,” Ross says. “It’s not like you go from eating applesauce to steak the next day. It’s a food texture journey and you kind of move along as you get used to different textures.”
Desperate to help her son as well as other parents and pediatricians, Ross launched her own study, which was published last June in the Journal of Texture Studies. The investigation is the largest of its kind for children with Down syndrome.
Through a nationwide search, she enrolled 218 children, including 111 with Down syndrome, for a home-use test that evaluated the appeal of various-textured snack products. The study included a contingent of typically developing children as the control group.
“Participants each received a gigantic box of food,” says Ross. “We included four food products, and each product was fed once a day for six days. We also sorted the products by flavor categories, like cheesy, and assigned each child flavors they liked.
“Caregivers filmed the child’s reactions as they tried the foods,” she says. “Later, my colleagues and I analyzed the videos and coded them for the various behaviors.”
The results revealed that some children, whether typically developing or with Down syndrome, are texture sensitive and others are not. That sensitivity plays a major role in the child’s eating habits.
Children with Down syndrome and texture sensitivity showed a clear preference for dissolvable snacks like puffs or vegetable straws. They also liked oily and crispy textures but tended to reject snacks that were dense, gummy, or hard. These children ate significantly less than all the other children.
In addition, youth with Down syndrome often have oral sensory processing difficulties that make them over- or under-sensitive to the food in their mouths. This can lead to overstuffing the mouth and problems with gagging and choking. Choking is a frequent cause of death for these children.
“I think the takeaway for parents is to view texture acceptance as a journey,” Ross says. “Start with a preferred texture like pureed applesauce and move into less preferred textures over time such as denseness and gumminess. And really be patient with feeding. Allow the child to interact with the food.”
Ross says the study helped her family understand that Isaac is hyporesponsive—he has low registration of sensory input to textures.
“That explained a lot of his behaviors,” she says. “And we eventually were able to move him forward with textures. He really liked dissolvable foods, so we looked for something dissolvable that was more nutritious and with higher fiber to help move him along.”
Ross is currently working on another paper that incorporates the texture and flavor information as well as shape, color, and size to create a complete dietary picture.
“It’s essentially designing food for a child with Down syndrome,” she says. “The idea is to get information and food products out there to help move children through the texture journey.
“Ultimately, we want to provide texture so children can learn how to process it and know what to do with food in their mouth,” Ross says. “We want to decrease the risk of choking as they get older. And to give them more nutritious foods as well as quality of life with more variety.”