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Anxious mothers wait outside the doctor’s room. Some with babies cradled in their arms. Others with sons or daughters, mostly in their late teens, seated beside them. Next to the corridor, toddlers romp on colourful plastic slides, see-saws and rocking horses. Born with a cleft lip and/or palate (a congenital deformity where the upper lip and/or the palate fails to fuse during a foetus’s growth), these children have undergone reconstructive surgery. And they are here today for a follow-up with their plastic surgeon.

Prathibha, a young dentistry student, who is fifth in the line, says, "I’m shy but I do have friends. I love kids. It hurts me when they avoid me because I don’t sound clear to them. When they ask me about my scar, I feel sorry for myself." She grew up in a "positive environment of supportive parents, peers, and teachers," but fifteen-year-old Satish has not been as lucky. "My classmates direct rude jokes at me. Neighbourhood kids shy away from playing with me."

Psychological support

Medical teams in Chennai claim to provide "psychological support" to children with such deformities and their family, but the absence of a clinical psychologist in any of them is an omission too glaring to miss.

Plastic surgeon Dr. Jyotsana Murthy, who heads the cleft team sponsored by the international NGO, The Smile Train, in Sri Ramachandra Medical College, confirms that there is no psychologist on their team (comprising ENT specialists, dentists, a speech therapist, a nutritionist and a paediatrician). She says children are referred to a psychiatrist if they show signs of depression or take longer than usual to pick up normal speech. In Balaji Dental, Craniofacial Hospital & Research Institute, Dr Manoj Kumar, an oral medicine specialist who has a correspondence post-graduate degree in psychology, spares a few moments from his dental session with the patients to allay the anxiety of parents before surgery. He also dispels some of the myths and superstitions associated with cleft during these sessions. Says Dr. S. M. Balaji, chief maxillofacial surgeon of this clinic, "Perfect speech correction and facial appearance can be attained at an early stage of 3 to 7 years through surgery. So where is the need for a psychologist?" He says interactive sessions with parents/children once in six months or in a year will suffice.

Diffident

Dr. Nappinnai Seran, consultant psychologist at Meenakshi Mission Hospital, disagrees. She says most cleft children grow up into diffident adults. "As their voice may not be clear, they may be asked to repeat what they speak. Such responses discourage them from speaking. Also, a scar left by a surgery can make them painfully self-conscious." Kochi-based maxillofacial surgeon Dr. Sajish Kuriakose echoes her views. He said that even though psychological support is a shared responsibility of all the specialists in a cleft team, a clinical psychologist or a psychiatrist has expertise in it.

"While the psychologist can deal with the emotional problems, a psychiatrist can counsel as well as explain the medical and surgical aspects," says Dr. Raman, psychiatrist at Sri Ramachandra Medical College, who recollects treating a couple of children with depression and mild aggression. He observes that those were extreme cases that could have been avoided through early intervention.

"Parents are the primary source of confidence for these children. But most parents are themselves distressed," says Dr. Nappinnai.

"What if Satish develops suicidal tendencies later?" asks Chinamma, Satish’s mother, disquieted. Urmila Kankaria, mother of 3-year-old Muskaan, is equally apprehensive about the future of her daughter. "She is too shy. When other kids in her playschool ask about her cleft, I don’t know how to answer them. How will my daughter handle such questions from them," she wonders.

"Counselling by a trained clinical psychologist solves the day-to-day emotional problems faced by children with cleft and their parents," says Dr. Nappinnai. As adolescents, such children tend to be introverts, as that is when they become more conscious about their looks. Self-esteem dips. "A few counselling sessions could reinstate it," she assures.

A New York mother, Jacqueline Dooley says she found much of the support from networking with other parents through Internet, which has also made it possible for her daughter Emily to meet other kids with cleft. The cleft team of the New York University Medical Center brought a psychologist for Jacqueline when she was terrified of Emily’s surgery. In her blog ( www.cleftstories.com) which chronicles Emily’s progress and lists many links related to cleft, a quote sums up her anxieties: "Yes I worry about her future, her challenges, her resilience and her pain. But in the quiet night, when I hold her against me, for those few moments, all that matters is that she is mine. My baby. My own."

Appreciate their little achievements, be it a drawing or a nursery rhyme

Avoid being overprotective as it can erode their confidence.

Treat them on par with their siblings.

Encourage them to participate in dance, sports that don’t require much verbal skills.

Slowly, exchanging cues in a group and team spirit win them friends and self-confidence.

Teachers can sensitise other children on how to behave if there is a child with a cleft in the class.

Motivate them to talk freely, introduce them to other kids and sensitise their siblings.

UMA SREEDEVI

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