Shannon Goldwater believes that our greatest accomplishments in life often come from our greatest challenges. Her dream of healthy children was shattered in 2002 when her triplets were born four months prematurely. Although they overcame numerous life-threatening infections and countless surgeries, feeding and nourishing them quickly became the biggest challenge. All three babies cried, gagged, vomited, and often turned blue during feeding and eventually required feeding tubes to survive. Shannon had nowhere to turn, no information, and no support.
Shannon and her family spent over a year of their lives living in and out of numerous hospitals across the country to find help. However, no particular feeding program had all the right answers, and each one contributed to the triplet’s triumphs in varying degrees. She quickly realized that every family’s journey is unique. Treating children who struggle to eat is complex and requires the efforts of multiple specialists working together. It was through this battle, and the love for her children, that Shannon was inspired to create an organization that would build awareness, ignite research, and increase education for the then unnamed condition.
Her determination and collaborative spirit brought together international feeding experts to form the PFD Alliance, formerly known as the medical professional council. She inspired the creation of an online platform for family advice, resources, and support –as well as virtual learning center for the healthcare community– that has made a substantial impact nationwide. And, it was Shannon’s vision for a universally accepted definition and identity that facilitated a pivotal consensus meeting and the groundbreaking consensus paper. Accepted for publication by the Journal of Pediatric Gastroenterology and Nutrition in October of 2018, “Pediatric Feeding Disorder: Consensus Definition and Conceptual Framework” declares the universally accepted term and stand-alone diagnosis for the broad spectrum of pediatric feeding struggles now treated as a symptom to over 300 other conditions, such as autism, cerebral palsy, and cystic fibrosis.