Addressing Cleft-Affected Infant Feeding Around the World

One of our local connections requested help developing a feeding system for cleft-affected infants.

My name is Ashley and I was born with a complete bilateral cleft lip and palate. When I was born in 1985, feeding options were very limited. The hospital provided my parents with a single two-ounce glass bottle and found a lamb’s nipple buried deep in the back of a drawer. The lamb’s nipple was the consistency of a couple of rubber gloves. I was able to push on it with my extended premaxilla to express milk since I was unable to suction.

Now, thankfully, parents in the United States have many specialty feeding options. Dr. Brown’s Specialty Feeder, Mead Johnson Cleft Palate Nurser, Pigeon nipple and bottle, and the Medela Special Needs Feeder are all excellent options.

I began writing online about my experiences growing up and living as a cleft-affected person and through the magic of the internet, I have been able to reach people in many other countries. This past summer, a mother from the Philippines messaged me just after her cleft-affected son was born, asking for advice because she didn’t know how to feed him. I was struck that in developing countries, there are still limited resources for, and information about, feeding babies affected by cleft. I was able to collect pre-loved specialty bottles from all over the United States. I shipped them to the Philippines for distribution among families, with income and severity of cleft being factored into distribution.

The most significant issue I encountered was shipping cost. As a result, I am working to figure out a smarter, cheaper way to feed babies affected by cleft in developing countries.

I researched designs people have already developed in an attempt to address specialty feeding issues in developing countries. One such product is called the NIFTY cup, however, upon asking contacts in the cleft community from the Philippines what they thought of them, I was told the cups are not very effective. The specialty bottles work much better.

A mother’s instinct to feed her child is innate and when she is unable to do so, it’s devastating for the baby and the mother both. I’m in the very early stages of contemplating and brainstorming, but my goal is to someday find a way to address this significant issue, ideally with something that would be locally sustainable. While I’m not there yet, I want to find a way to help on a smaller scale in the meantime.

Currently, I am interested in finding ways to reduce shipping costs for donated bottles. For example, through my research so far, by word of mouth from families, I’ve heard that the valve piece is what makes the Dr. Brown specialty feeder work. Many people said they were able to use the valve in more widely available bottles, and it worked equally well. If that’s true, the small valves could be shipped at a much cheaper rate, reducing the astronomical shipping costs. Additionally, I am interested in the creation of a cheaper specialty feeder that could be available in developing countries, perhaps provided to local hospitals or missions who do perform cleft treatments.

Thank you for your time. If you have any ideas or suggestions that would help address this significant global issue affecting the cleft community, please let me know. My goal is to be of service to my beautiful cleft community around the world, and I’m slowly figuring out how to do that, one step at a time.

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Hi there @brentcourson, is there any way you could get Ashley onto the forum?

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