What's in a Face?

Personal stories about children with craniofacial disorders.

What does a face tell the world? Do our faces reveal who we are?

Approximately one in 650 babies is born each year with a craniofacial disorder, an abnormality of the face and/or head resulting from atypical growth patterns of the face or skull. These conditions include disfigurement brought about by birth defects, disease or trauma, and the soft tissue and bones are generally affected.

Medical and technological advances help to treat many craniofacial anomalies. But, the correct treatment requires the correct diagnosis, which can be difficult to pinpoint. In fact, doctors may use different terms to describe the same lesion. Three types of birthmarks commonly confused with one another are port wine stains, hemangiomas and vascular malformations.

Years ago, there was little knowledge of safe and effective treatments for children with facial anomalies. Children were sent away, ostracized by their communities. Even today, there are people who cannot cope with another person’s facial difference.

Children with craniofacial anomalies deserve the right to medical treatment and an emotionally supportive environment. When parents serve as advocates for their children, children are better equipped to cope with life’s challenges. I know from experience in raising my son Kenny.

Maritsa’s Story

“We all want the perfect child,” admits Effie Radoslovic, mother of Maritsa. “When Maritsa was born, the slight redness on her nose looked like a scratch.” The nursery thought nothing of it. The pediatrician said it would go away. “But day after day, the redness got worse,” remembers Effie. After researching, Effie took her daughter to a dermatology specialist in New York. Maritsa had a hemangioma.

Hemangiomas are benign (non-cancerous) tumors that may or may not be apparent at birth. However, they always become visible within one to four weeks after birth. While hemangiomas usually occur on the head or neck, they can occur anywhere, including the internal organs. Some hemangiomas will grow and change for the first 12 months of life and then regress. Others continue to grow.

Treated unsuccessfully for eight months with laser treatments and steroids, Maritsa was taken to Boston. She underwent her first surgical procedure at age 1. As surgery proved unsuccessful, the hemangioma continued to grow.

The Radoslovics trusted their surgeon and persevered. In 2005, at the age of 2, Maritsa’s second surgery to remove the hemangioma was a success. “There is still a bump above the skin and remaining scarring,” explains Effie. “When she’s ready, we can control the discoloration with laser.”

Effie says at first she was weary of people’s reactions to Maritsa, because she was unaware how to respond to questions. “But Maritsa accepts it; she sees nothing different about herself.”

For parents in a similar situation, Effie recommends joining an online craniofacial support group. “I read postings from families and write back to them to share my experience.”

Kenny’s Story

At 36 weeks gestation, my son Kenny was born. My husband and I hardly noticed the red “bruise” on his nose. The nursery said it was trauma from the birth canal; the pediatrician called it a port wine stain that would go away with a few laser treatments. But it was more complicated. An endovascular surgeon in New York explained that Kenny was born with an AVM.

An AVM is a tangle of abnormally connecting arteries and veins that exist without capillaries between them. The accelerated pressure of the blood supply feeding the malformation forms a sponge-like reservoir, causing the nose to be red and bulbous. AVMs are typically found in the brain. Only a small percentage of AVMs occur in the face, and nasal AVMs are rare.

Kenny’s AVM could not be cured. And it was critical to control the saturation of blood to prevent harm to the underlying tissue or growth of the nasal bone. I thought Kenny’s condition was my fault, but was assured it was a genetic fluke. Willing to go to any lengths to educate myself, I digested highly clinical information.

Kenny has forgotten the years of laser treatments, nasal cauterizations and multiple angiogram/embolization surgeries to the seal blood flow in the vessels. The teasing, staring and ignorant remarks took place early in life for Kenny. While Kenny was so young, my older son and I did whatever we could to intercept the tormenting.

Before Kenny started kindergarten, I educated the school’s staff about Kenny’s facial difference and cited the emergency protocols. “The kids were completely accepting of Kenny even though his nose was larger and redder than any they’d ever seen,” reflects Kenny’s kindergarten teacher, Jayne Mazie. “To them, he was just Kenny.”

For our family, the fear surrounding Kenny’s nasal resection in 2002 was indescribable. Uncertain what the next step would be once his AVM (and nose) were removed, we prayed for the safest outcome. The options were a nasal prosthesis or a skin graft using skin from Kenny’s groin. His surgeon did what was best for Kenny. The graft has survived and stretched with the growth of Kenny’s face.

When his face and body are developed, Kenny will have a fully reconstructed nose. “Kids ask me all the time what’s wrong with my nose,” says Kenny. “I tell them it’s a birthmark and I was born with it. That’s pretty much all they want to know.

Jordan’s Story

Up until age 10, everything in Jordan Fellman’s life was fine. “We went to the dentist because my teeth were loose and my left cheek was swelling,” recalls Jordan. “He sent us to an oral surgeon for a biopsy.”

But, the biopsy could not be completed. “Bleeding from the jaw was excessive,” says Jordan’s mother, Bonnie Schiller. “We were sent immediately for an MRI.” An interventional radiologist in Washington explained that Jordan had an arteriovenous malformation (AVM), a rare vascular condition, that could be controlled with one or more embolization surgeries. “From that moment on, life as we’d known it turned upsidedown,” Schiller admits.\

Jordan’s face continued to swell. After seven embolizations, the AVM is under control, but there is residual infection. Jordan awaits surgery to remove both the AVM and material used during embolization.

“My friends are accepting of my face,” says Jordan. “But some kids aren’t. I try to ignore nasty comments and stand up for myself. If everyone understood how serious AVMs were, then maybe they wouldn’t make fun of it.”

Brittany’s Story

Brittany’s Sullivan’s hemangioma was not present at birth. Within a week, however, a small red rash developed on her upper lip. “It continued to get darker and the skin was raised,” says Brittany’s mother, Marisa. The Sullivans met with four specialists. “There were conflicting opinions on what to do and when to do it. I felt very alone and didn’t know where to turn.”

When Brittany was 1, she underwent surgery in Los Angeles to have her hemangioma removed. In the process, her upper lip and nostril were affected. Three years later, the flat part of the remaining hemangioma was discolored. Brittany underwent four to five laser treatments. “No one understood why we’d travel so far for her care,” says Marisa, “but her doctor had an excellent reputation.”

Now age 12, Brittany faces challenges. “Adolescence is tough, especially for a kid with a facial difference,” says Marisa. She reminds Brittany that kids are curious. “I encourage her to answer questions and move on.” In 2007, Brittany began a series of three surgeries in New York to reconstruct her upper lip and straighten out her nostril. “Our surgeon’s primary concern at all times is for Brittany.”

Marisa wishes that adults were more educated about facial differences to be better role models for their children, who may know someone with the condition. “Teasing can be devastating.”