Mother and daughter navigate cleft lip and palate journey together

MURRAY — Tiffiny Tyler knows the cleft lip and palate journey from both sides — as a patient and as a mother.

Born with cleft lip and palate herself, she has undergone about 25 surgeries. At her 20-week ultrasound, she faced a familiar uncertainty when she learned her daughter, Kairi, would also be born with a cleft lip.

"I remember just going through all the emotions of my child having to go through the same things I did," she said.

Utah has about twice the national rate of babies born with a cleft lip or cleft palate, though researchers don't know exactly why.

A cleft lip or cleft palate is a birth defect that happens when a baby's lip or the roof of the mouth doesn't fully form during pregnancy. It can affect feeding, speech, hearing and dental development.

"Any time you receive a diagnosis for your child, it can be scary and unknown, and rightfully so," said Dr. Dana Johns, a plastic surgeon with University of Utah Health and Intermountain Primary Children's Hospital.

Johns explained that a cleft lip can often be detected during an ultrasound, while a cleft palate can be more difficult to identify before birth. Treatment can involve years of surgeries, appointments and care from a team of specialists.

"These kids are just like all other kids. They're just probably a bit tougher and a bit cooler and a bit more ready to face the world than all other kids because they've gone through a lot more in their short little lives than most kids go through in the entirety of it," she said.

Kairi has already undergone multiple surgeries of her own.

"I think the scariest thing for me currently is I don't know when I'm going to get another surgery, and surgeries aren't fun, so I don't want to get another," she said.

Today, Tiffiny and Kairi are using their experience to support other families facing similar challenges.

They have traveled to Washington, D.C., to advocate for legislation to improve insurance coverage for cleft-related surgeries and care.

"Find those communities of people who understand, because it is a lot," Tiffiny said. "Be kind to yourself. Give yourself some grace."

"In the end, it should all turn out right," Kairi added.

100 Cleft Portraits Tour

Those wanting to learn more can visit the 100 Cleft Portraits Tour, a national traveling art exhibit making its Mountain West stop in Salt Lake City.

Hosted by Intermountain Health Primary Children's Hospital, the free exhibit features portraits and personal stories of people affected by cleft lip and palate.

The exhibit will be open to the public at the Utah Museum of Contemporary Art on Saturday from 4 to 8 p.m. and Sunday from 2 to 6 p.m. Admission is free.

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