Our 13 year old girl passed away from a cardiac event

Our little girl passed away in December 2006 from a cardiac event at the age of 13 years. Samantha had a rare chromosome disorder and a bicuspid aortic valve, however, no other similarly diagnosed persons have succumbed; in fact, there are several adults who are developmentally delayed, but otherwise healthy. Almost all individuals have some problems with bowels, constipation and diarrhea that needs to be managed. Our daughter, appearing healthy, experienced a one day illness that stuck suddenly at school: She had been fine, suddenly got pale, began to get gaggy and vomited a couple of times. She rested the day and seemed groggy, but being mainly non-verbal, was unable to express her needs. In reflection with others, we believe she was experiencing headaches. As well, Samantha had been experiencing auras... upon review of medical documentation, this was noted as far back as her 3rd year by professionals, but the condition was not disclosed to us, explored, nor treated. We, parents, and school suspected something must be going on - we would see Samantha momentarily pause in the midst of an activity before resuming what she was doing - and so, our daughter underwent an echo and eeg. The echo was normal and did not show the valve difference (this can only be found on ultrasound; which was performed following cardiac arrest) but we were told it is a common defect and should not be the cause of arrest. The eeg was determined to be "inconclusive" because our little girl grinded her teeth significantly. We were set up for another eeg under anesthesia to give a truer reading, but Samantha arrested the very day before the procedure. We know for sure there was absence seizures because earlier in the month she had an episode in our pediatrician's office that was witnessed by the doctor, a teacher and us and we were to begin treatment immediately following the test. The only clues in hindsight: A few weeks prior to the cardiac event, we found our daughter in the middle of the night, profusely vomiting in her bed. She had not been sick either before sleep, nor following the episode of vomiting. She had also begun to belch more frequently than usual. I strongly believe the seizure activity is tied in to the cardiac event. Our daughter was revived by hospital, but within days, all organs began to fail and we lost her. Our sons, as well as my husband and I were all tested for potential familial cardiac defect (thankfully, none was present.)
This is our story and if the clues are able to help anyone else prevent death, then we feel, there has been a larger purpose to our immense pain and loss.
God Bless,
Velvet
http://www.tetrasomy18p.ca/
"Samantha's Syndrome"