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No. 67 Skin |
The arrival of our grandchild Aïcha in January 2001, with a severe case of lamellar ichthyosis, created a hiatus in the family. She was a collodion baby, her skin at birth so hard and shiny she looked as if she were wrapped in cellophane. She was immediately put in a high-humidity, oxygen-enriched incubator at the hospital. The first evening there her grandfather stood by the incubator with her father, who sang to his sick little newborn daughter. Within hours her skin developed deep and bleeding crevasses. For a week we did not know if she would survive. Sometimes Fatoumata, who turned two, 4 days after Aïcha’s birth, accompanied her parents and reached into the incubator to caress her little sister. After a few days our daughter took Aïcha out of the incubator once or twice a day to breast-feed her. Aïcha came home at 3 weeks. It was frightening that she could never close her eyelids, which turned inside out (ectropion), and that her carapace-like skin kept her almost immobile. And meanwhile the parents searched frantically for information and competent doctors who knew something about this very rare skin disorder (but were, nonetheless, for the most part oblivious to the burdens and sudden wrenching adjustments in family life). There have been many tears and times of despair and depression. Our daughter and son-in-law found themselves with a full-time job for which they were unprepared. Aïcha was quite passive for the first six months, as if her little body were using all its energy to survive. Fatoumata wanted to proudly show everyone her baby sister and was perplexed by people's strange reactions. Still small herself, it was difficult having a sister who needed so much of their mother’s care and attention. For two years Aïcha was bathed twice a day; one bath is now often replaced by a quick shower. She took to bathing and swimming (tub, pool, lake) as a duck to water. And we all try our best to let the stares of strangers run off us like water off a duck’s back. Her skin has to be treated immediately, so that the moisture is as far as possible ‘locked in.’ Rough over most of her body and extremely dry, it desquamates constantly, sometimes like cornflakes, sometimes smaller, like fish scales. The nape of her neck is dark, with the appearance and texture of a turtle’s neck. If her skin itches, she peels it off; if it bleeds, she needs special bandages without adhesive tape. Once a week her mother smears her scalp with ointment, wraps it in plastic foil (occlusive dressing), then a scarf, and after half a day shampoos her hair to comb the thick scales from her head. Aïcha's arrival had not only emotional, but also logistical consequences: inordinate quantities of laundry, hot-washing her greasy clothes and bedding almost daily; getting a car with air-conditioning because she cannot perspire (danger of hyperpyrexia); keeping her mostly inside in very hot weather and having a cooling spray handy when outside; installing humidifiers in all the rooms in winter, when the air is dry. Despite her severe skin handicap, the goal has been to let Aïcha lead a normal life – sandbox, swing, tricycle, and all activities typical of a young child. It is now hard to believe she is the same girl who was born almost 3 years ago. The first year she was unable to use her thumbs (the skin so taut she could not stretch them); her mother patiently did exercises with her, so that she is now as skillful with her hands as any other child. She is bright, lively, loves to sing, and radiates such an inner joy and has such a contagious sense of humor, the family find her just as charming outside as in. However, other children can be cruel, pointing and shouting comments, so that Aïcha now frequently says things like ”Mama, I'm not ugly, am I?“ or ”Mama, I'm not disgusting, am I?“ Or they refuse to hold her hand in playing games. It tears one’s heart out. Adults may either stare mutely, offer inappropriate advice or ask if she has been burned, so we are all constantly faced with quite a pedagogic task. Among friends and the large extended family, Aïcha is a cheerful, clownish little extrovert. But the minute anyone stares at her, she sticks out her tongue, or does as she recently did in a supermarket, saying to her mother, ’Mama, I'm staring back!“, or she withdraws into herself. Aïcha and her sister, like any siblings, can get in terrific tiffs with one another. But if Fatoumata notices that Aïcha is being insulted or hurt in any way, she is immediately protective and puts her arms around her. Aïcha is always accompanied by a small pharmacy of salves, ointments, oils and lotions (she knows all their names and what they are for), which are used depending on several factors: which part of the body, the time of day or night, the season, the weather, etc., treatment done mostly by her mother and father, sometimes her grandparents, and now also with the help of Aïcha herself and her sister. Having a grandchild with a permanent, genetically caused health problem that will always necessitate intensive care has made so many of our former personally focussed concerns seem trivial. We have become more aware than ever of inner worth versus outward appearance. We hope that Aïcha’s obvious innate stamina and her outgoing personality will pull her courageously through adolescence and into a rewarding adulthood. |
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