My sister took her for further tests, knowing that something had to be wrong, and discovered that she has Long QT Syndrome, and was a lucky girl. The usual first symptom is sudden death. Occasionally there are fainting episodes that indicate it. A simple ECG is not always enough. It takes a specialist in heart rhythm to diagnose it properly. Even many cardiologists miss it on the ECG. The odds of other family members having this is 50%. Futher testing has been done, and my infant niece also has it, as does my sister. The treatment is simple. Usually beta blockers treat it successfully (blood pressure medicine). Occasionally pacemakers are required, but it beats death. My family has so far tested in the safe range, but we are continuing with genetic testing.
Anyway, the reason I'm writing is that if YOU know of someone who has a family member who died a sudden death, and the autopsy turned up nothing, Long QT is a possibility and the rest of the family should be tested. Remember, the first symptom is often sudden death. It is more common that previously thought. I'm sure we've all heard of that teen athlete that died on the field. Or the teen/young adult/young mom who died in her sleep, or in the tub. Even a sudden surprise can trigger cardiac arrthymia leading to death. Death has been documented from Long QT from a babies a few days old to 44-years-old. This is a TREATABLE heart problem!
Long QT is a suspected cause for SIDS (Crib Death) babies.
If you know of someone that could be in this situation, please check the SADS Web site. |