UW Health Kids: Team helps Janesville twin with cleft lip and palate thrive

July is Cleft and Craniofacial Awareness Month

MADISON, Wis. – Nine years ago, Sarah and Dan Harvey, of Janesville, were overjoyed to learn they were expecting twin girls.

But after Sarah’s 20-week ultrasound, the Harveys knew one of their twins was in for a long, difficultroad.

 While still in the womb, one of the twins, who would be named Victoria, was diagnosed with a unilateral cleft lip and palate. Her twin sister, Gwendolyn, was unaffected. These are congenital birth defects where the upper lip or roof of the mouth doesn’t fully develop, leaving gaps in the lip, nose and mouth. 

 The Harveys were sent to American Family Children’s Hospital in Madison while Sarah was still pregnant to meet with Dr. Catharine Garland, pediatric and adult plastic surgeon, UW Health, and medical director of the Cleft and Craniofacial Anomalies Clinic at the children’s hospital.

 “It was an uncertain time, but Dr. Garland took the time to explain everything and go over the game plan,” Sarah said. “She reassured us that the cause of cleft lip and palate is often unknown, and we were not alone.”

Cleft lip with or without palate impacts one in 700 children in the United States, according to the American Academy of Pediatrics. While some of these conditions can be diagnosed during pregnancy, others are diagnosed after birth, according to Garland.

The Cleft and Craniofacial Anomalies Clinic at American Family Children’s Hospital has a team of doctors, surgeons, speech and language experts, social workers, nutritionists, dental experts and hearing specialists to help address issues with the head and neck. This is one of the few clinics in the region with comprehensive specialty care all in one place, which is the best way to provide care to patients, she said.

“It can be overwhelming for families,” said Garland, who is also an associate professor of plastic surgery, University of Wisconsin School of Medicine and Public Health. “Facial differences can be stigmatizing, and people may make incorrect assumptions that there are also cognitive differences, but that is usually not the case.”

 These kids just need to go to the hospital more often for surgery and sometimes therapies, she said.  

The twins were born Oct. 14, 2016, joining their growing family that included older sister Ally, then eight years old.

Victoria ultimately needed both surgery and therapy, as well as special support right away.

“We literally left the hospital in Madison a few days after giving birth and we drove straight to American Family Children’s Hospital,” Sarah said. “They helped us with special bottles to feed Victoria and made sure we could properly care for her as an infant.”

The medical team created a mold, similar to a dental retainer, of her gum ridges, lip, and nose to assist in planning future treatments. Most patients with a cleft lip and palate undergo two surgeries within the first year or so of life to help meet developmental milestones, according to Garland.

In Victoria’s case, her cleft lip and nose were repaired at six months and her cleft palate was fixed at 14 months. Both surgeries were successful with minimal scarring, she said.

“My job as a surgeon is to look at the end game. These are tough times with all the treatments, visits, therapy, information overload and two big surgeries,” she said. “But it won’t be this way forever. There will be a normal childhood, and that is what gives patients hope.”

Victoria, now 8, has had four total surgeries, including two ear surgeries to help her hearing, as she was at a high risk of ear infections due to her diagnosis.

“It is scary to see your baby go off to surgery, but everyone at the children’s hospital was amazing; they put us at ease and took such good care of us,” Sarah said. “The Cleft and Craniofacial Clinic staff are like family to us.”

Victoria still sees Garland once a year for check-ups and has her next surgery scheduled for September to support her developing teeth, but any other procedures should be completed before she becomes an adult. In the meantime, she is a busy, thriving 8-year-old girl who enjoys dancing, playing with friends, and spending time with family.

“I have people who tell me, ‘Wait, didn’t one of your twins have facial differences?’ The scarring is so minimal, they can’t even see it,” Sarah said. “It warms my heart to see how far we’ve come. I hope we can inspire and support other families by sharing our journey.”

For Garland, seeing the before-and-after photos is the best part of her day.

“I am a small part of these families’ lives, whom I often meet before their kid is born, and seeing them living their best lives years later is why I come to work every day,” she said.