Meet Elizabeth Goodman, mother to Elliot, and 2022 Virtual Community Event Honorary Chair. Learn more about the event and how to register here.
Early in my pregnancy with Elliot, I found out I had severe IUGR (Intrauterine growth restriction). As a result, I was closely monitored and had to undergo an early scheduled c-section. It was determined that she needed to come out at exactly 37 weeks. She was born healthy but at a very low birth weight of 4.14 lbs, which was less than 1st percentile.
During her first year, Elliot had no issues with feeding. She breastfed and then transitioned to solids like I had come to expect for her feeding journey. Right at year 1, she started refusing all solids. We didn’t understand why or what was going on. My mind initially went to Autism because she seemed to have gross motor skill and speech delays. Our pediatrician dismissed my concerns. He said some kids are just picky eaters. I did some research on my own and enrolled in a two-year evaluation at local organization for Autism and early childhood development. It was advised that Elliot had gross motor skill and speech delays and we were referred to the children’s hospital’s developmental pediatrician and outpatient rehab.
The Developmental Pediatrician ruled out Autism and diagnosed Ellie with hypotonia and sensory processing disorder. Throughout all of this, I was desperate for help with feeding and didn’t know where to find it. Her diet during this time consisted of milk, yogurt, and limited purees. We started feeding therapy as part of her overall Occupational Therapy, but it didn’t seem to be helping. Elliot would only eat a handful of solids. I was worried about her nutrition. Every day I struggled with what to feed her and how to get energy into her growing body. Every day I felt like a failure.
She slowly started accepting a few solids. I was scared to give her non-accepted foods for fear that she would refuse to eat. I lived in fear of feeding time. I was desperate every single day to be able to give her the nutrition she needed. She was no longer on the growth chart.
It was very difficult for me, a healthcare attorney and lobbyist with resources, to navigate the confusing web of finding a diagnoses and treatment. This always reminds me that others are probably struggling even more to get access and figure out what is going wrong. We have to find ways to make treatment more accessible and available to marginalized and underserved populations.
After a lot of research and referrals, I finally started seeing a pediatric gastroenterologist at the local children’s hospital. She was the first doctor to listen to me, believe me, and help me find meaningful solutions to feeding. She prescribed a nutritional supplement and Elliot’s weight started increasing. She was back on the growth chart and for the first time I felt hope.
We were then connected to Feeding Matters. At Feeding Matters, I found solace to know that I wasn’t alone. It wasn’t just me, it wasn’t my fault, and there were resources available. Feeding Matters connected me with a pediatric nutritionist and a pediatric psychologist, who we still see today. I also got connected to a new feeding therapist.
Elliot is now almost 8. She’s 30th percentile for weight and 70th percentile for height. We still participate in feeding therapy and have made so much progress. She now eats lots of fruits, grains, dairy options, and…BACON! She loves bacon and we go through several packages a week. Can you blame her? It remains the only meat product but adding a single meat product was an enormous hurdle as it was her biggest aversion. Sometimes she lets us add spinach into smoothies. Previously, she would stealthily sniff out a single morsel of veggie we attempted to incorporate into anything. And while her growth continues to be supported by some nutritional supplements, I can now see a future where we won’t need it for long. For me, this is huge.
With the help of Feeding Matters and the incredible providers who listened, believed, provided a safe space, and helped us find solutions, we have made incredible progress and are incredibly grateful. I am honored to chair the 10th Annual Community Virtual Event to help raise awareness, funds, and hope for families with pediatric feeding disorder.