One in a Million ®

NORD raises awareness of rare diseases by telling the stories of affected individuals and families. In these “One in a Million” stories, we hope to communicate that every life is important and no disease is rare when it affects someone you love.

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Kenny, Jordan, Maritsa and Brittany

The following article was written by Deb Breslow for Parent Guide News. Deb is the mother of one of the children (Kenny) whose story is included here.


WHAT'S IN A FACE by Deb Breslow

"We restore, repair, and make whole those parts....which nature has given but which fortune has taken away, not so much that they may delight the eye but that they may buoy up the spirit and help the mind of the afflicted." Gaspar Tagliacozzi, Plastic Surgeon, Italy 1597

Sad Realities

Approximately one in 650 babies is born each year with a craniofacial disorder. These conditions include disfigurement brought about by birth defect, disease or trauma. Craniofacial disorders are abnormalities of the face and/or head resulting from abnormal growth patterns of the face or skull. Typically, the soft tissue and bones are affected.

Years ago, there was little knowledge of safe and effective treatment for children with facial anomalies. Children were sent away; ostracized by their communities. Even today, there are parents who cannot cope with their child's facial difference. Unable to focus on the child as a whole, they seek rationale as to why their child does not look normal. This child is at risk of being deprived of an emotionally supportive environment.

Without a parent advocate, children with craniofacial conditions are in a boat without a paddle; missing opportunities to partake in every avenue of medical treatment, losing the confidence to develop a health sense of self, lacking the courage to face life's challenges.

Craniofacial Conditions

Different doctors may use different terms to describe the same lesion. Medical advances are rapidly taking place but the correct treatment requires the correct diagnosis. Three types of birthmarks that are commonly confused with one another are port wine stains, hemangiomas and vascular malformations.



Maritsa

"We all want the perfect child,' admits Effie Radoslovic. "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." After doing her own research, Effie took her daughter to a dermatology specialist in NY. Maritsa had a hemangioma.

Hemangiomas are benign (non-cancerous) tumors that may or may not be apparent at birth, but always become visible within one to four weeks after birth. They usually occur on the head or neck, but 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 and steroids, Maritsa was taken to Boston; undergoing her first surgical procedure at the age of 1. Unsuccessful, the hemangioma continued to grow. Trusting their surgeon, the Radoslovics 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. When she's ready, we can control the discoloration with laser," Effie explains.



"Initially, I was very emotional -- afraid to see people -- unsure how to answer questions. But Maritsa accepts it; she sees nothing different about herself."



Radoslovic recommends joining an on-line craniofacial support group. "I read postings from families and write back to them to share my experience." Connecting with others who understand is the best solace.

Brittany

Brittany Sullivan's hemangioma was not present at birth. But within a week, a small red rash developed on her upper lip. "It continued to get darker and the skin was raised", her mother, Marisa remembers. 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."

Since the population of children with this condition is so small, there are few parents with whom to talk. When Brittany was one, 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 4-5 laser treatments. "No one understood why we'd travel so far for her care but her doctor had an excellent reputation."

Now 12, Brittany faces challenges. "Adolescence is tough; especially for a kid with a facial difference", remarks Sullivan. 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 NY to reconstruct her upper lip and straighten out her nostril. "Our surgeon's primary concern at all times is for Brittany."

Sullivan wishes that adults were more educated about facial differences to be better role models for their kids. "Teasing can be devastating".

Kenny

Deb Breslow of Wyckoff, NJ was focused on a healthy baby. At 36 weeks gestation, Kenny Breslow was born. Breslow and her husband 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 NY explained that Kenny was born with an arteriovenous malformation, a rare vascular condition.

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

"Kenny's AVM could not be cured. It was critical to control the saturation of blood to prevent harm to the underlying tissue or growth of the nasal bone." Breslow recalls. "I thought it 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's forgotten the years of laser treatments, nasal cauterizations and multiple angiogram/embolization surgeries to seal blood flow in the vessels.

The harmful teasing, staring and ignorant remarks took place early in life. "Since he was so young, my older son and I ran interference," Breslow explains.

Prior to kindergarten, Breslow educated the school's staff about Kenny's facial difference. Emergency protocols were reviewed for bleeding. Jayne Mazie, kindergarten teacher in Wyckoff, played an integral role during Kenny's most difficult year. "The kids were completely accepting of Kenny. Even though his nose was larger and redder than any they'd ever seen, he was just Kenny", she reflects. "Ms. Breslow's book about Kenny was distributed to parents to deflect comments from the peanut gallery".

"The fear surrounding Kenny's nasal resection in 2002 was indescribable", Breslow remembers. "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 his groin. His surgeon did what was best for Kenny. The graft has survived and stretched with the growth of his face."

When his face and body are developed, his nose will be fully reconstructed.



"Kids ask me all the time what's wrong with my nose. I tell them it's a birthmark and I was born with it", Kenny shares. "That's pretty much all they want to know".

Jordan

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," he shared. "He sent us to Washington, DC for a biopsy". Jordan's mother, Bonnie Schiller explains that they biopsy could not be completed. "The bleeding from the jaw was so excessive, we were sent immediately for an MRI." An interventional radiologist in Washington told us that Jordan had an AVM. He explained that it if treated soon, it could be controlled with one or more embolization surgeries".

"I couldn't understand anything the doctor said", Jordan reflects. "I knew it was bad, just not how bad". Schiller recalls that time as life turning upside down.



Jordan's face continued to swell. After seven embolizations and subsequent infection, the AVM is under control and the cheek has begun to shrink.

"There was a lot of scarring after surgery", Jordan notes. "My friends are completely accepting of the way my face looks." But not all kids are nice. "I try to ignore the nasty comments and stand up for myself", Jordan admits. "I wish everyone understood how serious AVMs are; then maybe they wouldn't make fun of it".

Jordan's parents are grateful for the parents who've gone through similar trials. "But there aren't a lot of them", Schiller notes. "You can talk to parents about ear infections and tonsillectomies and broken arms. But how many people know about vascular malformations?"

Cautious Optimism

Though parents and family are affected by a child's facial difference, their {tribulations} pale in comparison to what the child has had to endure. As parents, we learn to cope by identifiable experience. Younger in years, our children have learned to accommodate; taking adversity in stride. As their advocates, we contribute to their framework but it's them who prevail. Inspiring us, they teach us that beauty is not seen with the eyes. Beauty is strength, resilience, truth, pride, self-esteem, humor, insight, gratitude, patience and tolerance.

What's in a face? What does it tell the world? Does it reveal who we are? Is a person's character defined by a face that's disfigured, unsightly, bruised, swollen, bandaged, or simply different? What we choose to do with our face (with our persona), contributes to who we are. Normal or not, like it or not, it's what we have. Being comfortable in our skin invites people in—gives them the opportunity to know us.

Challenge yourself to look beyond the face. The person within is beautiful; inside and out.

Deborah Breslow is a freelance writer. She lives in Wyckoff, NJ with her husband, Jay and sons, Robbie (12), Kenny (11) and Danny (8). Ms. Breslow's work is published in magazines and craniofacial support publications in the U.S., Canada, and U.K. Her book, FUNNY FACE, is available on-line at: http://members.aol.com/djbreslow/funnyface/