Eating is a natural instinct, but for some babies and children, nature needs a nudge. For these kids and their families, Nourish is there to help.
“Just imagine that your baby doesn’t eat. Maybe they don’t know how. Maybe they can’t suck or swallow in an organized way or maybe food feels bad in their mouth or they have pain when they eat. When all goes well, babies should just eat, but for those we see, something went wrong,” said Marsha Dunn Klein, a pediatric occupational therapist and author who specializes in pediatric feeding.
She is also co-founder with Mandy Carlsen of Nourish, a local nonprofit dedicated to providing family and community support for children with feeding challenges.
For 13 years, Nourish has offered a range of support and scholarships for dietitian evaluations; breastfeeding support; direct feeding therapy, including speech therapy and occupational therapy; and specialized feeding equipment and supplies that aren’t covered by health insurance. Clients include children born prematurely and those with physical and emotional disabilities, as well as children with developmental delays, special needs and conditions such as autism spectrum disorder. The majority of Nourish clients range in age from birth to five years, but the organization serves children up to age 21. Nourish also provides parent support, community education, and therapist training and mentoring.
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While the concept of feeding challenges may be surprising, the National Institutes of Health found that approximately 20 to 50 percent of normally developing children and 70 to 89 percent of children with developmental disabilities are reported to experience some type of feeding problems.
“Feeding challenges are much more prevalent than people think, but you often don’t realize it until you have a child who needs feeding therapy. It is something that is very difficult and impacts the entire family,” said Carlsen, a pediatric occupational therapist and member of the board of directors of Nourish.
The hands-on support from Nourish takes many forms, covering issues such as newborns struggling to breastfeed or bottle feed or having difficulty transitioning to solid foods. Other children need nutritional support with specialized infant formulas or with gastrostomy tubes (feeding tubes or g-tubes) or transitioning from g-tubes to oral feedings.
Dunn Klein said that typical scenarios also include premature infants who lack the endurance to eat and infants with medical complexities — including cleft palate, cerebral palsy, respiratory or cardiac problems that make it difficult to breath while eating, and gastrointestinal issues that cause discomfort during feeding.
“That is the scary thing about feeding challenges. You have to eat in order to live. When you have a newborn coming out of the Neonatal Intensive Care Unit who can’t nurse or take a bottle or can’t eat without aspirating and putting their lungs at risk, it becomes a scary and life-threatening issue,” Carlsen said.
Aside from the physical implications, these issues present emotional and social challenges that can have long-term impact.
“Many of our families say mealtime is their least favorite part of the day and that is heartbreaking. So much of society and socialization is about coming together around food and eating. When these kiddos aren’t eating it is a real source of stress for everyone,” Carlsen said.
Dunn Klein said that Nourish also work with children who many describe as “picky eaters.” These children may eat just five or six foods, object to food textures or tastes, and often struggle to gain weight and grow.
“These are kiddos that have a nervous system that interprets the sensory properties of food in a neuro-diverse way. They are wired differently. We might have a disgust reaction to some foods and they have that sort of big reaction to many foods. Parents often become desperate and we can help them with different strategies,” Dunn Klein said.
Ultimately, Nourish seeks to educate the public and health care professionals about feeding challenges and the services the organization provides.
“We started this nonprofit to support these families. It is enough when families are struggling to help their children eat. They shouldn’t also have to struggle to find money to cover the equipment or therapies they need to make that happen,” Dunn Klein said.
Supporters of Nourish also hope to promote awareness about the fact that the nonprofit is an Arizona Qualifying Charitable Organization (QCO). Monetary donations made by Monday, April 15 may qualify for an Arizona tax credit of $421 for individuals and $841 for married couples filing jointly on 2023 Arizona state income taxes; the credit for 2024 is $470 for individuals and $938 for married couples filing jointly.
“This tax credit provides a substantial boost for our programming and scholarships. People are sometimes more inclined to donate when they know they can see a benefit come back to them in state taxes,” Carlsen said.
