Published date: January 30, 2023
Faith Denefe has a heart for exploration. Whether bravely balancing a hawk on her arm or gently studying a frog in her hands, the 8-year-old from Rogers is eager to learn about the world around her.
“One of the things that makes Faith so special to me is just that she's always curious, and she's eager to share anything that she learned with everybody around her and willing to try new things,” said her dad Dr. Matt Denefe. “She's always incredibly active. She's trying to explore around outside, trying to find the next bug that she wants to show us or teach us about a new animal that she learned about on TV.”
Nothing slows her down, including her vascular anomaly. Denefe was born with a large, red vascular birthmark known as a capillary malformation or “port wine stain” on the left side of her face. Capillary malformations are the inappropriate connection of blood vessels, specifically capillaries, that affect the skin's surface and are present at birth. These malformations have well-defined borders, are flat and change color based on the patient's blood pressure or body temperature. They are not painful and do not cause other systemic conditions unless associated with a syndrome. The birthmark can appear anywhere on the body. If untreated, the birthmarks grow slowly, become darker over time and are more challenging to treat with a laser. They also begin to rise off the skin and change texture.
In the pediatric population, capillary malformations are rare, but one of the most common vascular anomalies treated at Arkansas Children’s Hospital's Vascular Anomalies Center of Excellence.
As new parents, Matt and Sam Denefe initially thought it was bruising from childbirth. The following day, they were told it was more serious.
“It definitely took us aback, and we really didn't know kind of what this meant. Was there long-term consequences? Was there anything deeper? We had all sorts of stuff racing through our mind,” Matt Denefe said. “Dr. (Gresham) Richter was a huge blessing because the first time that we met him, he took all of our anxieties and stresses and just relinquished them. He put us at peace, made us stop assuming the worst.”
Gresham Richter, M.D., is a pediatric otolaryngologist, chief of Pediatric Otolaryngology and director of the Vascular Anomalies Center of Excellence at Arkansas Children’s Hospital and professor and vice chair of Pediatric Otolaryngology in the Department of Otolaryngology at the University of Arkansas for Medical Sciences. He has performed about 15 laser therapies on Denefe since she was 6 months old. The treatments lessen the color of the malformation.
“She's a wonderful girl who has a beautiful personality and has an amazing attitude considering she has a vascular malformation on her face,” Richter said, adding at ACH, “we have a cadre of lasers that allow us to treat a whole variety of different colors, shapes and sizes of vascular malformations. We call this selective photothermolysis, which means we are selectively using laser energy or light to heat up the blood vessels specifically that are abnormal without injuring the surrounding soft tissue.”
Denefe has a multidisciplinary care team, including an ophthalmologist, ENT and dentist. Matt Denefe said seeing all the medical experts in a one-day visit is ideal, especially after moving from central to northwest Arkansas.
The medical team focuses on ensuring the slow-growing vascular birthmark does not impact her eye and gives special attention to the gum line so the extra growth does not cause any shifting.
“Faith’s capillary malformation is improving with the various laser therapies we're using to treat her. I don't think you ever truly cure a capillary malformation, although we can lighten it to the point where she only needs a treatment every couple of years or every five years,” Richter said, adding the number of treatments varies by patient. “So will it ever be completely gone? Remember this is part of her and it’s part of what makes her unique and wonderful in so many ways.”
Even though she’s facing more treatments throughout her life, Faith doesn’t mind visiting Arkansas Children’s Hospital.
"(Dr. Richter) is funny, and he always gives me a fist bump when he comes in the room,” she said. “The nurses always give me high-fives when they come in the room, and sometimes they give me suckers.”
Matt Denefe said other families should choose Arkansas Children’s because “it’s a home.”
“They really do just try to go out of the way to make things easy on the family and inviting for the kids,” he said. “Faith has never once been scared to come to a doctor's appointment. It's just been a welcoming place for everybody.”
The Vascular Anomalies Center of Excellence at Arkansas Children’s Hospital in Little Rock has state-of-the-art lasers to provide individualized treatment for patients with various vascular malformation colors, shapes and sizes. Dr. Gresham Richter explained more about the two lasers used in Faith Denefe’s surgeries:
“We use two lasers. What we'll do at times is use a double-pass technique where we go over the surface once to get the deep component of the skin and then change the settings just slightly so we can get the superficial part of skin,” Richter said. “So, we're getting two layers of the skin where the capillary malformation is embedded.”
Many people call them stork’s bite or angel’s kisses, but vascular birthmarks (medically called vascular anomalies) are abnormal blood vessels that people are born with. Most often, you’ll see them on a baby’s skin not long after they’re born. But they can also be found deeper than the skin and are discovered later in life as they grow.
Its characteristics are a port-wine stain that involves the skin around the eye and cheek as well as the covering of the brain; seizures; atrophy of the brain tissue; and developmental delay. Early diagnosis is important to allow control of seizures and monitoring of eye pressures by an ophthalmologist to help preserve vision.
Vascular malformations are made up of arteries, veins, or lymphatic channels depending on the type of malformation.
The characteristics of this syndrome are a mixed venous-lymphatic malformation usually involving the extremities. There is usually a port wine like stain on the affected limb and there is usually a difference in size between the affected and nonaffected limb, the affected one being larger.
Traveling from Ukraine to Little Rock, Anna and her father seek treatment from the world-renowned Vascular Anomalies Center at Arkansas Children's Hospital with the hope of making Anna better today and healthier tomorrow.
At Arkansas Children’s, a comprehensive, multi-disciplinary Vascular Anomalies Center diagnoses and treats children and adults with congenital vascular anomalies.
Various hemangiomas (also called strawberry birthmarks) are treated by the pediatric vascular anomalies team at Arkansas Children's.