The Sudden Unexplained Death in Children Program (SUDC) is something I found in my early desperate googling for people in similar circumstances as me. People who like my husband and I put a healthy three year old with a cold to bed one night and then found him dead in bed in the morning. While I found SUDC a few months out from my loss, I didn't contact them.
Why didn't I contact them? Well by then we had an autopsy report and a death certificate with severallisted causes of death. Drew had idiopathic (not showing symptoms) pulmonary hypertension, which of course we had no idea was occurring. There were two other things on the death certificate which I remember the pediatrician, who met with us to explain the autopsy report, were from the fact Drew stopped breathing. The thing the autopsy didn't figure out is any reason why he stopped breathing. So we have some symptoms but no cause.
I had gotten the mistaken impression that in order to be considered SUDC that the death had to have a completely unknown cause. I'm not sure from where. I did consider Drew's death to be SUDC in my head, since how else do you deal with the unexplained.
Daven from Missing Evan told me to contact SUDC and see what they had to say. Thanks Daven, I'm glad I did. So far I've spoken to the director and had a call that I need to return from the volunteer nurse. It has been good to talk to them. It should be possible to enter Drew in their research study. This may yield some answers for us or maybe not. Either way it will help me get some closure to have an expert check out his case. Also SUDC has some other resources available and I will check them out soon.
It is useful to find other people in your situation, even when your situation totally sucks and should never happen.