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CHARGE association looking at the future--the voice of a family support group
Insights
CHARGE association, a complex congenital anomaly, presents long-term management challenges. Increased awareness aids early diagnosis and intervention for affected children, improving developmental outcomes.
Area of Science:
- Medical Genetics
- Developmental Pediatrics
- Clinical Education
Background:
- CHARGE association is a recognized non-random cluster of congenital anomalies.
- Increasing awareness leads to a rise in diagnosed cases among children.
- Early management often prioritizes life-threatening issues, deferring long-term challenges.
Purpose of the Study:
- To examine the long-term management issues in CHARGE association.
- To address misunderstandings regarding the impact of multiple disabilities, including sensory impairments, on child development.
- To gather parental insights on teratogen exposure, specifically Lindane.
Main Methods:
- A questionnaire study distributed to parents via the CHARGE Association Family Support Group (UK).
- Follow-up data collection through personal contact and telephone interviews.
- Cross-referencing information with medical and educational records for accuracy.
Main Results:
- Identified significant long-term management challenges in children with CHARGE association.
- Highlighted widespread professional misunderstanding of developmental impacts from multiple disabilities, particularly multi-sensory impairment.
- Collected data on teratogens, with a specific focus on Lindane exposure.
Conclusions:
- Emphasized the need for comprehensive understanding and management of long-term issues in CHARGE association.
- Stressed the importance of addressing the impact of multi-sensory impairment on early development.
- Underscored the role of parental input in teratogen research within the context of CHARGE association.
Abstract:
CHARGE association is a non-random collection of congenital anomalies. The condition is becoming more widely known to medical and educational professionals. The number of children diagnosed is increasing, probably because of the greater awareness of this condition. This paper considers some of the long-term management problems which are often deferred in the early months, when acute life threatening problems take priority. Questionnaires were sent to parents via the CHARGE Association Family Support Group, UK. Thirty-nine were returned and incomplete information was sought by personal contact or telephone. The majority of children were known professionally to one or both authors and information was therefore checked from medical and educational notes. There is still widespread misunderstanding about the impact of multiple disability, especially when this includes multi-sensory impairment, on the early development of the child. Therefore, the information collected from the study has been from an educational and medical perspective, thereby aiding the understanding of these complex problems. At the parents request, information was gathered about certain teratogens, of which Lindane, an organophosphate, is highlighted.