Anyone here have experience with congenital heart defects and skeletal malformations syndrome? not many documented cases. daughter diagnosed, seen all the specialists, havent found anything other than a small asd and joint issues. need to worry?

Your posted information is too vague to provide much of an answer. CHD are relatively common and some are linked to genetic syndromes or chromosomal defects. If the kid has been evaluated by a clinical geneticist, they would have all the relevant information on what to be looking for. If not, I would look into it. They are found at medical schools or children's hospitals.

The majority of ASD occurs as random event. Holt-Oram syndrome is a rare combination of ASD and skeletal abnormality-absent or hypoplastic radius bone.

Watch for development of chest wall change in configuration and scoliosis. Your Pediatrician will examine your daughter during follow up visits. Does anyone else in your family have similar findings? There may be a genetic syndrome associated.