Letty, Age 4

Location: Tennessee, United States

Challenges:Letty primarily eats independently now, but she started out being fed 100% by a feeding tube and on a nightly feeding pump. Through early intervention and therapy, Letty now only receives 1-2 tube feedings a day.

Formal PFD Diagnosis: Yes

Age of Formal PFD Diagnosis: 8 months

Type of Insurance: Blue Cross Blue Shield

Percent of monthly budget that goes to feeding difficulties: 15%

Does insurance cover any / all medical costs? Some - We had to fight to get a lot of it covered - multiple appeals


Letty struggled with eating from the beginning. Early on, we knew something was wrong. By 5 months of age, Letty had already had two surgeries related to GI issues and was on a high dose of a PPI for severe acid reflux and erosive esophagitis. Letty was put on a feeding tube at 5 months old. From there, it took another 3 years of doctor's visits, surgeries, and genetic testing before we received her official diagnosis of Cornelia de Lange Syndrome. A symptom of this syndrome is feeding difficulties and GI issues. We felt fortunate to have built a supportive medical team prior to this diagnosis who already started her on a path of early intervention. By the time we received her official diagnosis, Letty had already started feeding therapy, among others, which positively impacted her feeding development. It was not without struggle, though. Our insurance company does not have a feeding therapy policy. Therefore, many times Letty's therapy was delayed due to a denial of service while we appealed the decision.

What having coverage could mean

Hard decisions have to be made about what we can financially cover and what we cannot. We have gone through many appeals with our insurance company to receive feeding support for our child, and sometimes our appeals work and other times they haven't. Getting our daughter the support she needs should not have to be so difficult. When she receives consistent therapy, we see a reduction in the need to use her G-tube and an increase in developmental and social skills as her feeding skills grow and she becomes a more independent eater. The process of mealtime develops skills beyond simply nourishing my child. Getting the insurance company to acknowledge that and support the services to help her develop and grow is vital. Every time the insurance company denies a claim or maxes-out her therapy services, it delays her developmental progress which in the long run will cost the insurance company more because her G-tube supplies are expensive and covered by the insurance plan.