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'Beyond the Face is a Heart:' Craniofacial Acceptance Month

September is Craniofacial Acceptance month. The Middlebury Hydrocephalus Association Walk will take place in October. Craniofacial conditions can be accompanied by hydrocephalus, a build-up of fluid that leads to swelling of the brain.

 

This is Tyler. He's a healthy, happy, active two-year-old who enjoys watching his older brothers play baseball and keeping his mom on her toes. In short, Tyler is like most little boys. He was also born with a rare craniofacial condition called a Large Congenital Melanocytic Nevus (LCMN).

An LCMN is a birthmark that occurs in approximately one in every 20,000 births. The nevus causes dark pigmentation of the skin that can range in size from small to giant, some even covering most of the body's surface. Those with an LCMN are more susceptible to skin cancer, and in a small percentage of cases pigmentation cells can be found on the brain and spinal cord.

Tyler's birthmark covers his right cheek and causes the affected skin to appear brown and hairy. His mom, Vivian Kudej, had no knowledge of the condition before her son was born.

"The first year of his life was an emotional roller coaster, trying to learn everything we could about what it was, what to do with it, finding a doctor familiar with it and who knew how to treat it. We did a lot of research online. It was very challenging," she said.

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Children with craniofacial conditions sometimes have hydrocephalus, a build-up of fluid inside the skull that leads to swelling of the brain. The second annual Middlebury Hydrocephalus Association Walk will take place from 9 a.m. to 2 p.m. Saturday, October 6, at Meadowview Park in Middlebury.

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Vivian and her husband Dave have lived in Shelton for the past 14 years. Their two older sons, David (12) and Ryan (9), are more than used to the unusual mark on Tyler's face, but other kids their age are not, as children are so often innocently naive.

"When I take him [Tyler] into school for the older boys' events, things kind of stop," Kudej said. "We get the pointing, whispering and stares. Sometimes people will ask questions like, 'Is he OK?' and 'What's wrong with him?'"

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Fortunately, Tyler is very much OK. Though people born with an LCMN are more likely to develop melanoma and neurological problems, an MRI showed that Tyler's condition is mainly aesthetic and that he is developing normally. But having a facial difference can lead to psychological challenges, especially in the formative years.

"Now he’s starting to become a little more aware of it, and I do worry that kids will judge him based on what they see," Kudej said. "My husband is very involved in Little League and the teammates have asked questions and spent time with Tyler and touched his cheek, so it's no big deal and they stick up for him. But not everybody gets to know him so well."

Thus, Vivian and Dave decided it is in their son's best interest to have the birthmark surgically removed — which brought on a whole new multitude of challenges.

"We needed to find a plastic surgeon who works with reconstructive surgery," Kudej said. "We went on numerous consultations with lots of doctors, and there were times when we actually educated the doctor instead of the other way around!"

Tyler was scheduled to have surgery at six months old, but an ear infection caused a setback and then the doctor canceled altogether because he said he did not have time for the procedure.

"At that point we felt that surgeon wasn’t right for us and it was time to move on. There is a doctor in Chicago who has pioneered the surgery for LCMN removal, but having two other boys I was worried about having to take the trip and the emotional upheaval it might cause," Kudej said.

They searched onward and finally found Dr. Richard Stahl, a cosmetic surgeon conveniently located in Guilford, Conn. Stahl removed portions of the skin from Tyler's cheek and nose back in March of this year to make sure the birthmark was not developing into skin cancer. With all tests showing normality, the next step is removal surgery.

"It will be a full mask grafting, where they take all the layers of skin including blood vessels from a donor site, which in Tyler’s case will be his belly," Kudej explained. "It's a very extensive surgery because it requires the reattachment of all the blood vessels."

That surgery will probably begin when Tyler is another year or two older. Kudej said the goal is for it to be completed before he enters kindergarten.

"It seems like forever. You get anxious in wanting to move forward," she said.

Equally as important as a doctor's care, Kudej said her family has managed to cope with Tyler's condition very much thanks to "two wonderful organizations:" Nevus Outreach, Inc. and a national nonprofit called Children's Craniofacial Association (CCA).

Nevus Outreach, Inc. has a conference every two years in Texas and one of the things they focus on is the emotional and psychological issues that develop with a facial condition. Kudej has also found support in online Yahoo and Facebook groups. Even the Shelton school system has stepped up, displaying posters for Craniofacial Acceptance in the hallways.

"I've met a lot of parents going through the same thing and to know that everything's turned out alright and to have their encouragement has been a Godsend. It’s so nice to have people understand," she said.

And understanding is really all they ask for from others, she added.

"It's heartbreaking that people will see someone who looks different and judge them before they know them. I love that CCA motto, 'Beyond the face is a heart.' There have been hurtful things said to us and I want to shelter Tyler from that. If you have a question, ask me. I'd rather talk about it than have you point and stare."

For more information about Craniofacial Acceptance month, visit ccakids.org.

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