Finn, Age 6

Location: Georgia, United States

Challenges:Dysphagia, vomiting, early satiety

Formal PFD Diagnosis: Yes

Age of Formal PFD Diagnosis: 2.5 years

Type of Insurance: Aetna, BCBS

Percent of monthly budget that goes to feeding difficulties: We’ve spent a ton on thickener, formula, medical visits

Does insurance cover any / all medical costs? Most costs, except thickener and formula

Summary

When Finn showed no interest in nursing during the three days in the hospital after his birth, I knew something was wrong. I begged for the lactation consultant to stop by, but she did not come until we were being discharged, showed me how to use a nipple shield, gave us formula, and we were sent home. We were in the pediatrician’s office week-after-week for months on end where I would explain Finn was not eating enough, choking, letting formula drip down his chin, projectile vomiting, and averse to the bottle, sippy cups, and eating in general. Even after multiple upper respiratory infections, his pediatrician was not concerned because he was “staying on his curve” at around the 15th percentile and it was “not unusual” for daycare babies to frequently get sick. When I finally convinced her to order testing, a swallow study showed severe aspiration and Finn was immediately put on honey thick liquids after 11 long months. A GI specialist we were referred to afterwards told us Finn would “grow out of it” and he was “just too busy to eat,” but I argued otherwise. The next few months are a blur for me because I was experiencing a mental health crisis at this time with severe PPD/PPA; I felt so alone, unheard, helpless. Finn went through test-after-test (scopes, EOE biopsies, swallow studies, a ph study, a gastric emptying scan, etc) which finally revealed a type 1 laryngeal cleft, but nothing to explain the early satiety and vomiting. We had his laryngeal cleft repaired at 18 months, went to outpatient feeding therapy throughout, and an intensive outpatient feeding program where they diagnosed him with ARFID and put him back on purées at 2.5 years old. At 6 years old, we most recently completed a family therapy program for ARFID through Stanford which tremendously helped us and Finn put on 8 pounds in 6 months. Finn’s little brother has the same issues and both are still undiagnosed outside of their laryngeal clefts. I am so thankful for organizations like Feeding Matters whose agenda it is to widen the scope of knowledge around PFD and ultimately develop a better care model for families affected going forward.

What having coverage could mean

Coverage of formula and thickener would be tremendously helpful in addition to our medical coverage - we spend around $400/month on formula.