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Causes of Death in CdLS


        For parents, caregivers, health care providers, and teachers, concerns and questions often arise regarding the care and well-being of individuals with Cornelia de Lange Syndrome. 

The most common causes of death in infants with CdLS are congenital diaphragmatic hernia (hole in the diaphragm) and respiratory (breathing) problems. In children with CdLS, the most common causes of death are heart defects and respiratory and gastrointestinal (stomach/intestines) problems.

Causes of death in adults with CdLS relate to gastrointestinal, pulmonary (lung) and cardiac (heart) systems, as well as infections or anaesthesia (medically induced loss of sensation).


Recommendation(s)

Causes of Death in CdLS

R27
The use of emergency cards should be considered for every person with CdLS.

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