Geneva family members highlight cleft lip, palate issues in Guatemala

GENEVA – Evelyn Gibbons is a lively, chatty little girl, a bundle of almost nonstop energy and a joy to her parents.

When she was born in 2006, Evelyn had a cleft lip and palate, which means her lip and the roof of her mouth – the palate – did not close all the way.

Her parents, Adam and Heidi Gibbons of Geneva, said they took it in stride, taking their baby on a medical journey of surgeries, bone grafts and therapies to correct the problem. Evelyn has more surgery to come, but in the meantime, she is enjoying third grade at Harrison Street Elementary School and playing with her 5-year-old brother, Toby.

“Nobody knows what causes cleft palate,” Heidi Gibbons said. “It’s a birth defect that happens about 1 in 700 to 1,000 births.”

While Evelyn underwent multiple surgeries and therapies at Rush University Hospital in Chicago, her grandparents, Jane and Joe Bartel of North Carolina, came to help. They met a doctor who was from Guatemala.

“I hadn’t heard of the thousands of babies with cleft palate who are just abandoned in a field or so malnourished because they are so hard to feed,” Jane Bartel said. “I went back to my daughter’s house, and I could not get it out of my head. What if Evelyn was born in Guatemala, and she died and no one tried to help her? That put a seed in my head.”

Six months later, Jane Bartel and her husband founded Evelyn’s Baskets of Love and Life and have helped about 300 babies with a cleft lip and palate and their families.

The charity helps give babies in rural Guatemala access to lifesaving surgery, but that’s not all. The baskets contain items to help the mothers support their babies to be strong enough for the surgeries, such as special bottles and money for formula. They also contain photos of Evelyn before and after the corrective surgery.

Evelyn and her father, Adam Gibbons, went to Guatemala for a week this summer, meeting up with the Bartels, who were there for a month. Evelyn was quite a celebrity to several families in Guatemala, as parents of cleft lip and palate children helped by Evelyn’s Baskets had only seen her in photos, not in the flesh, he said.

“They wanted to meet Evelyn,” Joe Bartel said. “Her before-and-after picture is what brought them hope that saved their babies’ lives. … I had my birthday on June 22, and this was the day we had with these first babies we saved. Evelyn was hugging these children, and the mamas were hugging Evelyn. It was heavenly. It was wonderful.”

The charity raises about $5,000 to $10,000 a year to pay for surgeries and transportation to hospitals, as well as the baskets.

But this year was different: Not only did Evelyn go to Guatemala, she hosted an art show through her mother’s photography website, heidigibbonsphotography.com, raising cash and collecting art supplies for the children she would visit in Guatemala that had been helped by Evelyn’s Baskets when they were infants, her mother said.

Evelyn added small stuffed animals, yo-yos and jump ropes, and began calling them fun kits, her mother said.

“The art show was far more successful than we could have imagined, raising enough art supplies and toys for 18 fun kits,” Heidi Gibbons said. “She raised over $100 to spend on additional supplies, and over $800 in monetary donations directly to Evelyn’s Baskets.”

The baskets, which are woven in Guatemala, contain a manual breast pump, water filter, and money for formula and specialty bottles with nipples that do not require suction, Heidi Gibbons said. They are made by the Medela Corporation in McHenry.

The nipple has a T- or X-shaped slit in the top, and a valve allows the baby to swallow a little at a time, she said. Guatemalan babies with cleft palate would become malnourished, Heidi Gibbons said, because of their inability to nurse. The babies need to weigh at least 10 pounds, and doctors will turn them away if they are not strong enough or don’t weigh enough, she said.

As an infant, Evelyn relied on this type of bottle, which allowed her to get strong enough to withstand the surgeries, her mother said.

“She is the face of our mission,” Jane Bartel said of the photos of her granddaughter included in every basket. “It brings them so much hope.”

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The Bartels previously had been to Guatemala on mission trips with a church, but Evelyn’s Baskets became a higher level of faith, Joe Bartel said.

“We arrived, and we didn’t know where to go,” Joe Bartel said. “We bought a basket made locally there in Guatemala and put specialty bottles in there and some bottle brushes, soap, tea towels to dry them.”

The couple sat at a lunch table and talked about what to do, when a young woman who sat across from them said, “ ‘I think I can help you,’ ” Joe Bartel said. The young woman was a volunteer pediatrician from Stanford University who could speak Spanish and was living with a family whose baby was born with a cleft lip and palate, Joe Bartel said.

“Was there a higher power here? I have to say yes,” Joe Bartel said. “We believe it was a higher power guiding some of this stuff. She helped us … and we made a presentation to the local clinic.”

Launching Evelyn’s Baskets saved more than babies’ lives. The charity gave strength to their parents, Joe Bartel said.

“They’d been told, if a child was born with any birth defect, it was a curse on the family and there is no hope. There was nothing to do about it, because, basically, there was no medical care,” Joe Bartel said.

“You can imagine, if you are the mother … and they show you before and after pictures of an American baby transformed,” Joe Bartel said. “And suddenly, you have hope. ‘Oh my gosh. What I’ve been told is not true. My baby can survive. My baby can be OK.’”

Evelyn smiled when asked how she liked being a celebrity to so many families in Guatemala.

“I felt perfect,” Evelyn said. “Niney-nine percent perfect.”