Chelsey Taylor and Elle Walters: Feeding Knowledge is Power

Chelsey Taylor found feeding her infant son “terrifying.” He was born with a cleft and a severe case of gastroesophageal reflux disease (GERD), which caused him to suffer dramatic choking episodes. During some, he even stopped breathing.

Chelsey promptly reported each incident to her son’s primary care doctors.

They dismissed them.

“It took a doctor seeing a GERD episode in real time for us to receive medications and a GI referral,” she said. “Until that point, I felt as if the doctors didn’t trust my instincts or believe what I was saying. I had to advocate for my child on a level I had never experienced before.”

Meanwhile, 700 miles away, Elle Walters was facing her own challenges. Her cleft-affected baby daughter would tire herself out drinking just a few ounces of milk. She had to pump every three hours, day and night, for months, filling her fridge freezer, chest freezer, and even a friend's chest freezer with frozen milk. Her hands grew dry, cracked, and bloody from all the work.

Chelsey and Elle knew they were not alone. They knew that cleft parents everywhere were likewise spending sleepless nights agonizing over how they would feed their babies. Chelsey heard personally from many mothers who returned home from the hospital with zero guidance on how to nourish their newborn.

“That was incredibly disheartening. I could not just let that go without trying to find a solution,” she said.

Into Action

Each on their own, Chelsey and Elle joined Smile Train’s Cleft Community Advisory Council (CCAC). Each on their own, they contacted Iva Ballou, Smile Train’s Community Development Manager, with the same message:

We want to help.

Iva put them in touch.

Elle is a creative copywriter, Chelsey a realtor and former teacher. They decided to combine their talents to put together a webinar that would empower new cleft parents and walk them through the first year-plus of caring for their babies’ nutrition and health.

Elle also invited a member of her daughter’s medical team — Dr. Jill Rabin, a speech pathologist and board-certified lactation consultant — to offer her expertise. Together, the four women collaborated for months to develop “Feeding Your Cleft-Affected Child: Prenatal Prep, Pumping, Bottle Feeding and Introducing Solids,” a seamless, 90-minute talk rich in facts and empathy.

“For my work, I’ve given many presentations to clients, but this one felt extra special and extra high stakes,” Elle said. “This one could actually change someone’s life for the better.”

They kicked off the webinar with a list of questions to ask doctors when building a medical team for cleft care. They then spoke extensively about the process of breastfeeding, comparing it with bottle feeding, before turning to solid foods: purees, spoon feeding, baby-led weaning, and adapted baby-led weaning. Finally, they wrapped up with a Q-and-A and provided a detailed appendix of linked resources so that parents could continue their own reading.

First-Person Perspective

Amid all the technical details, Chelsey and Elle made sure to sprinkle in observations and bits of wisdom from their own journeys.

Elle shared how she learned early on to take the lead in communicating with her medical team, advocating for a birth plan she felt comfortable with.

“I had heard stories from other cleft parents of very fear-based hospital environments, not very supportive,” she recalled.

“We were in constant contact with [our team], and we ended up having a wonderful experience. And really, besides giving us some lactation support, they were hands-off. And that's what we wanted.”

Chelsey recalled the success she found with baby-led weaning. When her son started on solid foods, she gave him safely portioned bites and closely watched as he took control of holding and chewing.

“It's so ironic, because our cleft-affected child — he's 18 months old now — eats 10 million times better than our four-year-old. She is so picky and hardly eats anything!”

Ultimately, Chelsey hopes “Feeding Your Cleft-Affected Child” can serve as a reference not only for parents but also medical professionals.

“I have been very surprised that hospitals, specifically labor and delivery units, are not more knowledgeable about our babies,” she noted. “Especially in more rural, smaller hospitals.”

“You are strong, beautiful, and loved.”

Chelsey and Elle’s contributions to the cleft community extend well beyond the webinar. Both women have found their voices as advocates, offering up their own experiences in public and one-on-one with other parents.

“My cleft community began with just two other cleft moms,” said Elle. “Both women were incredible sources of support and information. Especially during my daughter’s first year of life, I would reach out to them with questions about surgical recovery, feeding, speech… it was so nice to be able to talk to other moms who knew exactly what I was going through.”

Alongside their wealth of practical knowledge, they continually underscore the joy woven throughout their journeys as cleft moms. Chelsey points to the unforgettable moment she saw her son after his lip surgery.

“I fell in love all over again,” she remembered. “He was just as perfect and as beautiful as he was the first time I laid eyes on him.”

Elle celebrates the strength of her little girl, who has accomplished so much in her healing journey.

“I could not be prouder to be her mom,” she said. “She’s a happy, energetic, funny, confident child, and her resilience in the face of everything she’s gone through is astounding. She makes it all look easy.”

“How blessed we are to be chosen to fall in love with not just one beautiful smile, but two,” Chelsey reflected.

Just like their webinar, Chelsey and Elle couldn’t leave our interview without sharing some words of hard-earned wisdom.

Elle’s are for every child with a cleft. Chelsey’s are for their mothers.

You are strong, beautiful, and loved. You are perfect just as you are. Your cleft is just one of the many wonderful things that makes you unique. While challenging, your cleft journey will make you strong and resilient. It is all part of your story.” -Elle Walters

You and your baby are strong and you are chosen for this work. Trust your motherly instincts. -Chelsey Taylor