For infants and children with pediatric feeding disorders (PFD), every bite of food can be painful, scary, or impossible – often having long-term negative effects on children’s growth, cognitive development, physical strength, behavior, and nutritional status. That’s why Feeding Matters is dedicated to creating a world where children with pediatric feeding disorders will thrive.
“Feeding is something that happens daily, several times a day,” says Feeding Matters’ parent Lisa. “Consider that babies eat about eight times per day, and most of us three times per day plus some snacks. When feeding is a struggle it consumes all aspects of the day.”
Defined as a severe disruption to eating, drinking, or digestion, a pediatric feeding disorder may cause medical problems and compromise growth and development.
“I want to paint a picture of all the obstacles and frustrations we encountered in our 3 year quest for a diagnosis,” adds Lisa. “Constant skin rashes, some that required hospital stays. Mouth sores. Cracked and bleeding fingers. Stomach and bowel problems. Visits to multiple specialists, even going out of the state and country. Financial strain due to high deductibles and uncovered services. Being reported to Child Protective Services and the fear about what this might mean.”
This cycle of abnormality is often the norm for families navigating PFD.
Applying the US Census Bureau’s 2017 population estimates, approximately 2.3 Million children under the age of 5 experience severe pediatric feeding disorders annually. Yet, there is no functional system of care for pediatric feeding disorders locally, nationally, or globally.
Dealing with a pediatric feeding disorder can feel stressful and isolating, but what Lisa learned is it not something that needs to be navigated alone. Lisa connected with Feeding Matters and joined the Power of Two program where she was paired with a parent coach named Cathy who had experienced a similar scenario with her own child.
Lisa’s parent coach helped her make the difficult decision to eventually have a gastric tube surgically placed.
“The Power of Two program helped me cope, shifted my view of normalcy, and helped me find a purpose to the struggle,” said Lisa. “Soon thereafter I became a parent coach. For me, the silver lining of going through the struggle is the hope that my experience might help other parents who are going through similar feeding issues.”
Feeding Matters – the first organization in the world dedicated to advancing the research, identification, and collaborative care for children with pediatric feeding disorders – is on the precipice of impacting significant systemic change, including family and professional support.
In 2017, Feeding Matters reached more than 129,000 families and medical professionals from all 50 states and 112 countries.
The NASCAR Foundation is proud to support Feeding Matters on behalf of our Betty Jane France Humanitarian Award Finalist Shannon Goldwater. Because of Shannon’s outstanding commitment to helping families of children affected by PFD, The NASCAR Foundation provided Feeding Matters with a $25,000 donation in 2017 to help them provide support to even more families just like Lisa’s.