Feeding Matters is the only organization where education, advocacy and support for pediatric feeding disorder (PFD) is our passion and purpose. In this season of nonprofit giving, one supporter explains why her family chooses Feeding Matters for their charitable giving.

From the day Kirbi Lamb’s first son, Finn, was born, she knew something was wrong with feeding. “He was just totally not interested in eating, literally from the moment of birth,” she says.

She reached out for support from the hospital providers, but everyone told her it wasn’t unusual. On the day of discharge, Lamb finally met a lactation consultant who handed her a nipple shield and formula.

Lamb was sent home with a baby who refused to eat and never did manage to breastfeed. She pumped, but her baby only took a little bit from a bottle. Milk dribbled down the sides of his mouth, and he vomited nightly.

Lamb and her son were at the pediatrician’s office once or twice a week. There, she also felt like she wasn’t being heard. Her baby was still steadily growing, thanks to the Lamb family’s sheer determination to feed him. Everyone told her spitting up and vomiting was normal.

It took 10 months until they finally got a referral for a swallow study. They discovered he was aspirating so badly that his liquids had to be as thick as honey. “That was the day I broke when they told me my child had been aspirating all this time. I was holding it all together until that day,” she says.

Since then, Finn, who’s now 7, has undergone feeding therapy, medical testing, laryngeal cleft surgery and an intensive feeding program. He never got an official diagnosis to explain the exact issues. What was clear is that from birth, it was hard to swallow, and gastrointestinal issues made eating more uncomfortable. Today, he eats about 20 different foods.

One of the most challenging parts of navigating their son’s feeding issues was not knowing what was wrong and not being believed. When Lamb’s second son was born with similar issues, the family knew how to help him from the start.

Since becoming a parent of a child with PFD, Lamb has been dedicated to supporting the education and advocacy work of Feeding Matters. “It’s the only organization where pediatric feeding disorder is their passion and purpose,” she says.

PFD impacts 1 in 37 children, making it more prevalent than autism and cerebral palsy.

Still, even providers need the education Feeding Matters offers, says Lamb. “Providers still don’t know what they need to know about feeding disorders. Everyone thinks it’s picky eating.”

The Lamb family are generous donors to Feeding Matters. She says, “I want other people who are going through it to know what to look out for and that there are others out there going through this.”

How Feeding Matters uses charitable gifts to support families and raise awareness about Pediatric Feeding Disorder

Feeding Matters is a 501c3 nonprofit organization that operates on grants and charitable gifts from generous donors. We have the highest possible rating on Charity Navigator of 4 stars.

Charitable gifts to Feeding Matters are used in the following ways.

Family financial assistance program:
Raising a child with PFD is expensive. That’s why we offer grants to help support families in need. Grants are used for formulas, care and medical costs.

In 2023, 4 families were awarded $2,500 each.

Advocacy:
We advocate for policy changes and increased awareness of pediatric feeding disorder on a national and international level. We were the catalyst for the name and code for PFD, which is the foundation for all future system changes.

Research:
A lack of longitudinal, evidence-based data and the diverse nature of PFD are barriers to understanding the individualized needs of children with the disorder. Together with our PFD Alliance, we strive to identify, fund and facilitate research and clinical studies that address these issues. We aim to move the field from using practice-based evidence to relying on evidence-based practice.

Education:
We provide crucial resources and support to families navigating the challenges of PFD. We facilitate professional educational initiatives for clinicians, ensuring healthcare providers are equipped with evidence-based knowledge and tools. XX clinicians joined our International PFD Conference in April.

Whether you are a long-time supporter or are giving for the first time, thank you for helping us improve the lives of children with pediatric feeding disorder. We are grateful for donations of all sizes.

Donations made to us are generally tax-deductible in accordance with applicable laws. Click here to donate.