Nonprofit offers support for families struggling with feeding disorders
The news came when Sandra Wernsman and her husband Michael took their 3-month-old son, Mason, to a routine pediatric visit. They were shocked to discover Mason had stopped growing and his head circumference was smaller than normal.
“I had been nursing him and everything seemed to be going well. So it was really scary when his height and head circumference stopped growing,” Sandra recalls.
Mason was referred to a gastroenterologist who told the worried parents that their son simply wasn’t getting enough calories. Wernsman worked diligently to adjust Mason’s feeding schedule, offered various formulas, and tried bottles of varying shapes and sizes, but nothing worked.
By the time Mason was 2, his gastroenterologist recommended having a gastrostomy tube, or G-tube, placed through Mason’s abdomen into the stomach to ensure proper nutrition. Without a diagnosis in sight, Mason lived with a feeding tube for the next three years. Seeing no major improvement in his growth, and feeling increasingly isolated and overwhelmed, his parents felt they had no one to turn to for support.
One day, when Wernsman was with Mason at the doctor’s office, she asked if there were other families who were facing similar issues. The office staff referred her to Feeding Matters, a Scottsdale-based nonprofit that connects families coping with feeding disorders and provides education and resources.
“I didn’t know it was such a widespread thing,” says Wernsman. “I kind of just thought it was me, so it was hard for me to reach out to anybody to talk about it. I went online and got the education and support that way.”
Wernsman was encouraged by blogs written by parents coping with similar issues as her own. “To hear the real stories from the parents and their true feelings about the situations they were going through, that’s what I could connect with,” she says.
Currently, an estimated 1 million American children under the age of 5 have severe feeding problems. According to a report by Feeding Matters, pediatric feeding disorders make it challenging for children to eat, drink or digest food, potentially delaying growth and development or causing health problems.
“When you’re going through this, you’re so overwhelmed and nothing makes sense. We empower parents with the right knowledge and information so they can be the best advocates for their children,” says Shannon Goldwater, founder and strategic advisor of Feeding Matters.
Following her own personal struggle with her triplets’ feeding disorders, Goldwater wanted to create a support system for parents that would provide the solid foundation families need to navigate the medical, emotional, financial, educational and social issues they face. She also saw the need for early intervention, more research and the importance of collaborative care for children and their families.
“Our goals are to further the field of pediatric eating disorders. That starts with tools for medical professionals to identify these kids sooner; unite families with a stand-alone diagnosis for the condition; further research to help advance the field so we can develop best practices; and to develop a reimbursement code for insurance,” says Goldwater.
In partnership with Chris Linn, president and CEO of Feeding Matters, Goldwater launched the program in 2006. Currently, the organization helps 60,000 people learn how to navigate the complex healing journey associated with a pediatric feeding disorder.
To further education and awareness of feeding disorders, Feeding Matters hosts a biennial Pediatric Feeding Conference where medical professionals from across the country share information and develop better diagnoses and treatment protocols.
“At our last conference, there were 300 attendees in person and over 200 called in virtually, representing 43 states and 12 countries,” says Goldwater. “We’re truly the only organization of our kind in existence and we’re really uniting the field by inviting leading medical experts to help address the critical concerns and trying to effect systematic change for children suffering from pediatric feeding disorders.”
These days, Mason is 6 and thriving. Having enrolled in a three-month feeding therapy program that addressed sensory and behavioral issues, Mason no longer needs to use a G-tube to get the nutrition he needs.
“After the program, meal time was not as stressful as it had been for the prior four years,” says Wernsman. “It’s still something we work on, it’s still something he struggles with. But I think we can all handle it a little bit better now.”
Mason loves to play soccer at school and at home, he plays with his sister Milana and builds with Legos. Now, the Wernsmans volunteer with Feeding Matters’ Power of Two program, parent-to-parent coaching designed to provide support to other families.
“While Mason was going through therapy and all of his tests and procedures, we came across so many volunteers who impacted us in such a positive way,” Wernsman says. “Volunteering is my way of giving back.”
Story: Leigh Farr
Photo: Mark Lipczynski