Genetic testing for Mansour

Mansour Mahmoud El Maraey is a 4 month old Egyptian boy born with complex congenital heart disease, asplenia, midline liver, dextrocardia, bilateral ventricular hypertrophy, bilateral hearing impairment and dysmorphic features. He is currently in heart failure and maintained in SKMC paediatric ICU. His treating physicians are requesting genetic testing: 'whole exome sequencing' important to guide his management and further advice to parents on future pregnancies.This testing is not available in SKMC and has to be outsourced so insurance does not cover it. The current cost is 1,140 euros.