Ask parents whose children have facial disfigurements to describe their lives, and the stories are strikingly similar.
For starters, these parents say, they and their child regularly endure stares, double-looks, pointing and thoughtless and even cruel remarks and questions.
“People look at you like you did drugs or something to cause this,” said one Chicago father of a 12-year-old girl with a facial difference. “People don’t stop and think before they make comments or lay blame.”
Having a facial difference is also hard because people often say such individuals “act kind of weird; act different,” said Will Eiserman, an educational specialist in the University of Colorado’s Department of Speech, Language and Hearing Sciences.
The reason they act differently isn’t due to the congenital condition that caused the facial difference, he said. Rather, it’s because other people don’t interact normally with them.
Research has shown, Eiserman said, that when people talk to someone with a facial difference, they tend to begin and end conversations more abruptly, ask intrusive questions and make eye contact for shorter periods.
“How are they supposed to learn normal social cues if everybody is interacting with them in a weird way?” said Eiserman.
And the difficulties don’t end there.
“A big problem is that people will look at a child or adult with a facial difference and assume immediately that the person is mentally deficient,” said Bruce Bauer, chief of the Division of Plastic Surgery, Children’s Memorial Hospital in Chicago. “But that’s rarely the case.”
To overcome these hurdles, experts advise that people with a facial difference need to develop social skills that go beyond those required by most people. This challenge may be all the greater because they may have a hearing and speech difficulty, said Eiserman. These social challenges come on top of the medical challenges confronting the child and family.
Although a single surgery might correct a minor cleft lip, children born with a severe facial problem may require up to 30 or 40 surgeries between birth and young adulthood, and require extensive orthodontia work, speech and language therapy and counseling, said Kathy Kapp-Simon, a nationally known pediatric psychologist with Northwestern University’s Cleft Palate Institute. She specializes in helping children with a facial difference and their families.
The physical and emotional demands experienced by both parents and child can become overwhelming, she said.
Yet, being born with a facial difference need not be entirely negative, said Eiserman, who was born with a cleft lip and palate that he said was “pretty significant. My speech was pretty incomprehensible well into adolescence, and the scars were quite noticeable.”
According to the Cleft Palate Foundation, clefts result from the incomplete development of the lip or palate before birth. Surgery can close both the lip and palate and make them appear similar to those of children whose lips and palates closed before birth, although some scarring and differences in growth may remain, experts say.
Eiserman specializes in early interventions for children with special needs, particularly children with facial differences.
“The question is,” he said, “how do we get from facing the challenge of the medical needs and the things that truly are hard about looking and sounding different, to realizing that this can really contribute to a neat personality, a sense of community and a tighter family bond? It need not be just this really awful thing.”
Jennifer Justice, 22, was also born with a severe cleft lip and palate. It was severe enough to affect her eyes, a problem that multiple surgeries have been unable to completely correct. A senior in a bachelor of fine arts program at The Art Institute of Chicago, she is a performance artist who also paints in oils. Her favorite artists include the Baroque masters and Francisco de Goya; her favorite contemporary artists include Jim Lutes of Chicago and Fiona Rea of Great Britain.
Having a facial difference, she said, “is not the end of the world.”
She feels the experience has made her a less judgmental person. “You learn how to cut through a lot of pretension; you learn how to see what’s important.” She feels it has made her sensitive to others, more introspective. “You have to know your body and yourself.”
But, she said, “it’s hard for people to deal with it. It’s scary for them. The hardest thing is that people don’t know how to talk about it. They’re afraid they’re going to hurt your feelings; that it’s so painful you can’t talk about it.
“I try to be light about it. It’s something I live with every day. It’s like living with being a woman. … It’s part of who you are; it’s natural.”
Eiserman said that about 484,000 people in the United States are newly affected by facial disfigurement every year. The number, he said, includes 250,000 traumatic injuries, 75,000 cases of skin cancer, 27,000 cases of head and neck cancer and 32,000 burn injuries.
The number also includes about 100,000 children — about 1 in 700 — who are born annually with a congenital problem involving a facial difference. The majority of those involve a cleft lip or a cleft lip and palate.
Other congenital causes, all of which are rare, can affect the orbits of the eye, the cheek bones or the upper or lower jaw, said Bauer. They include an underdeveloped jaw or other region of the face; underdevelped parts of the head and face, which happens in Treacher Collins syndrome; or the premature closure of one or more sutures in the skull, a condition known as craniosynostosis, he said.
Reconstructive surgery helps many people with a facial difference blend into the crowd, said Eiserman. “But others are hiding because of the huge stigma that is associated with having a facial disfigurement in our society, which overemphasizes beauty and has increasingly narrowed the parameters of physical acceptability.”
In most cases, giving birth to a child with a cleft lip and palate or some other facial difference comes as a surprise to most parents, said Kapp-Simon.
“Routine ultrasound is usually not focused enough to show facial deformities.” As a result, she said, “most families are shocked, and a bit numb in the beginning.”
They may then cycle through a host of reactions, including anxiety, fear, sadness and depression, she said. “Some families become very activist and seek information; others withdraw and barely function; sometimes one spouse will blame the other.
“This turmoil is normal. This is a crisis, and it takes time for the body to equalize and come back to normal again,” Kapp-Simon said.
An important first step following the baby’s birth is to seek care at a medical center with a team that specializes in craniofacial disorders, said Rickie Anderson, executive director of AboutFace USA, an organization that provides emotional support, information and educational services for people with facial differences and their families.
Anderson’s son, now 24, was born with a congenital condition known as Crouzon’s syndrome, a condition present at birth that affects the skull and bones of the face. Several of the sutures in the skull fuse, restricting the growth of the brain and deforming the mid-region of the face. It may be accompanied by vision, hearing, learning and eating problems, Kapp-Simon said, adding that surgery can ease many of these difficulties, as well as improve the child’s appearance, but it usually will not eliminate all signs of the disorder.
“His condition was severe and he wasn’t expected to live very long,” Anderson said of her son. He not only survived, she said, but he also graduated from college this year on Mother’s Day, and is getting married in the fall.
“These children are best cared for at a center that does this kind of work every day,” she said. It’s important “because the first surgeries are the foundation for those that follow.”
As the child grows, families must balance acknowledging the difficulties of having a facial difference with challenging the child to reach out and establish new relationships and activities, said Kapp-Simon. The child also will need help learning how to deflect people’s questions and stares with well-thought-out responses.
“I tell children that if they feel someone staring, to look that person in the eye and smile. It’s disarming,” she said.
Learning to forgive strangers in their ignorance is also important, said Eiserman. “People are going to stare and say things. The sooner a parent can get over that, the sooner they can really start being helpful to their child.
“Parents of very young children are setting the tone now for how their child will deal with difficult social situations later,” he said. “When they’re in the supermarket and somebody makes a comment or asks a question, they have to decide then and there about how they want their child to handle the same moments when he’s on his own.
“If they get defensive or have some kind of negative response, that’s what the child learns to do. And that does not make friends. Once in a while, that’s all you can do, but it should not be your only approach for handling those moments.
“My goal,” said Eiserman, “is that whatever the child does, he comes away from it feeling a sense of integrity. He may be sad or depressed that the situation arose, but he can feel good about how he handled it. That’s really important, and that’s probably as much as we can do.”
Denise Boneau and Matthew Kiell’s daughter was born with craniosynostosis, which results in a malformation of the face and head. When the Hyde Park couple took their new daughter, Marina, to the park or shopping, said Boneau, “someone would see us and say, `Oh, a baby!’ and I would cringe waiting for their reaction. Thank God for those who said, `Oh, she’s adorable; she’s cute.’ “
As Marina, now 10, grew older, Boneau and Kiell taught her to explain to young children who are inquisitive about her appearance that “my face looks different because I was born this way, and I have had many operations.”
Such approaches don’t work with all children, however. “Marina once took a swimming class,” said Boneau, “and one child wouldn’t go into the water with her because the child was afraid she would catch what Marina had. I said, `Don’t worry, you can’t catch it,’ but the child quit the class.”
The parents of a child with a facial difference also may need new social skills. The year after Marina was born, Boneau and Kiell’s friends, who had children with no facial difference, stopped visiting. “They gave us a gift for the baby, and we didn’t hear from them again,” said Boneau.
“There was a lot of discomfort. They had their beautiful normal babies, and they were afraid of what our reaction would be. But we felt abandoned.”
New parents of a child with a facial difference, she said, “need to know people are still thinking of them. Take them soup once a month. Your friendship, even when uncomfortable, is essential.”
“Ask the parents how they are doing and how the child is doing,” said Kiell. “If you get the impression they don’t want to talk about it, don’t press it. But you can say, `I want you to know we’re thinking about you. If you’d like to talk, we’re here to listen.’ If they get emotional but want to talk, that’s probably what they need.”
Parents can also seek help from organizations like AboutFace, said Bauer. “The main message of AboutFace is that the outside of the package doesn’t show you what’s inside.”
Jennifer Justice best summed up how to treat a person — child or adult — with a facial difference. “We should be kind and accepting,” she said. “You’re not better than somebody because of the way you look.”
BEST GREETING: A READY SMILE
Treat children with a facial difference as you would any child, said Kathy Kapp-Simon, a nationally known pediatric psychologist with Northwestern University’s Cleft Palate Institute. Kapp-Simon specializes in helping children with a facial difference and their families.
“They have the same needs, interests and possibilities for success as other children,” she said. “If there is someone in your child’s classroom or in the neighborhood who has a facial difference, invite the child over and get to know him or her as a person. Get information and learn about facial differences. They are beautiful children. There is just a part of them that is different.”
“Try to see the person with a facial difference as a person,” said Denise Boneau, mother of a 10-year-old daughter with a facial difference. “Don’t stare or make a comment about the `problem.’ Have the conversation you would have with anyone else.
“If you see a baby or a child with a facial difference and strike up a conversation with the child’s parent,” said Boneau, “pay a compliment about some nice feature or personality trait. `What beautiful blond hair!’ `What a nice smile!’ `What a talker!’ `What a lot of energy!’ Even `She’s so cute!’ ” if this can be said genuinely.
“Avoid comments about how bright the child seems, however, because this can seem to thinly veil the underlying assumption that a child who looks `that way’ might be developmentally delayed,” Boneau said.
Teachers who have a child with a facial difference in the classroom should talk with the child’s parents about what the family would like the classroom to know about their child and the cause of the facial difference.
The simple reaction whenever anyone encounters a child or adult with a facial difference is described on the Web site for the organization Let’s Face It: “To support a person with a facial difference, look them in the eyes and smile at them.”
WHERE TO FIND MORE INFORMATION
The following are among the resources available to those looking for help dealing with facial differences. The Web sites listed have links to other informative sites.
AboutFace: The goal of AboutFace, according to its Web site (www.AboutFace2000.org), “is to assist persons with facial differences to have a positive self-image and self-esteem so that they can participate fully in their communities.” E-mail: AboutFace2000@aol.com; 888-486-1209. Contact: Rickie Anderson, executive director, P.O. Box 458, Crystal Lake, IL 60014.
Let’s Face It USA: The non-profit network (www.faceit.org/letsfaceit) links people who have a facial disfigurement and those who care for them to helpful organizations and other resources. It also publishes a 60-page resource list annually. E-mail: Letsfaceit@faceit.org. Let’s Face It, P.O. Box 29972, Bellingham, WA 98228-1972.
Cleft Palate Foundation: The non-profit organization (www.cleftline.org) is dedicated to providing information to parents of newborns with clefts and other craniofacial birth defects and to the health-care professionals who deliver and treat these infants. E-mail: cleftline@aol.com; 1-800-24-CLEFT. ACPA/CPF National Office, 104 S. Estes Drive, Suite 204, Chapel Hill, NC 27514.
Will Eiserman: An educational specialist in the University of Colorado’s Department of Speech, Language and Hearing Sciences, Eiserman specializes in early interventions for children with special needs, particularly children with facial differences. He can be reached at the University of Colorado at 303-492-5794.
Also, “Children with a Facial Difference: A Parents’ Guide” (Woodbine House Inc., $16.95) by Hope Charkins is a good book for parents of children with a facial difference.
