L’enfant né avec une malformation faciale et les moqueries : analyse et prévention

Abstract

Dans la pratique clinique avec des enfants nés avec des malformations faciales, les moqueries sont fréquemment évoquées. Pourtant, a contrario, certains enfants n’en subissent pas. Une réflexion théorico-clinique a été menée, dans un souci de prévention, sur la base d’entretiens cliniques réalisés autour de ce sujet. Il en résulte que les enfants moqués ont, la plupart du temps, une incapacité à se raconter. Leurs parents évoquent toujours une expérience traumatique au moment de la découverte de la malformation et du diagnostic, une faille narcissique, mais celle-ci est restée telle quelle dans le psychisme parental. La honte et la culpabilité transpirent. L’enfant en a hérité, dans l’évitement de cette partie de son histoire et le déni de sa malformation. Il se trouve donc sidéré face à la remarque d’un Autre. Dans notre hypothèse, cette première moquerie blessera d’autant plus qu’elle touche au narcissisme, à cette honte transmise et ressentie par l’enfant héritier. Toutes les conditions seront réunies pour que la moquerie s’installe dans le temps.

Parental and Child Diagnosis Storytelling and Self-Image in French Children With Cleft lip With or Without Cleft Palate

“…Sometimes other children's curiosity is awakened by this half-perceived secret or they can use this easy target as part of typical children's quarrels. 10 Finally, this age of 4 to 6 years is also the age in France at which bone grafting is indicated for labio-alveolar or labio-palatine clefts. This surgical procedure is often the first time that children are developmentally able to fully participate in and remember.…”

“…6,7 A positive self-concept has been suggested to result from a positive construction based on parental support and child's parental image. [8][9][10] For children with CL ± P, some authors consider self-concept as an important variable that influences the way children feel about themselves and cope in relationships with others. 11 In fact, the way individuals view themselves influences their responses to others.…”

“…This social skill, which can be developed even with young children, needs to be scaffolded by an adult, starting with children's parents. 10,18 Suggestions to parents from cleft teams and in materials provided by specialized cleft associations, such as American Cleft Palate-Craniofacial Association (ACPA), Cleft Lip and Palate Association (CLAPA), or other associations specialized in visible difference (eg, Changing Faces) 19,20 include to communicate openly with their children about their diagnosis, to take and share photos at birth, and explain why they are going to the hospital frequently. However, little is known about how many parents implement these suggestions to handle this sensitive task.…”

“…Clear diagnosis explanations are key as studies demonstrate that when children do not understand an explanation, they will generally ask the same question again and again. 10 In their study with 10 north European cleft teams, Feragen et al 16 suggested that 93% of parents provided specific information in response to their children's questions, but less is known about parental communication with children who do not ask their parents questions. It is informative for cleft teams in providing support to families to know more precisely how parents cope with explaining a cleft diagnosis to their children as well as how children cope with telling the story of their cleft and answering questions about their diagnosis.…”

“…This social skill, which can be developed even with young children, needs to be scaffolded by an adult, starting with children's parents. 10,18…”