After the long wait, I received a draft of the report from the SUDC research study this afternoon. I emailed the research associate earlier in the week to check on the status of Alexander’s case review and she told me to expect the report this week. I told myself I would wait before reading the report but as soon as I saw the email today, I had to stop what I was doing and read it.
I had mixed emotions about finally getting the report. Part of me was filled with dread there would be no answers and I would be left to wonder what happened to my child and why. The other part of me was scared they would find something that I should have known about and prevented Alexander’s death. Either way, it was going to be hard to read.
Much of the report was based on family history that Dan and I provided along with Alexander’s medical records so it was all information I knew. Based on this information and evaluation of tissue samples provided by the medical examiner in our town, Dr. Krous and his team concluded that Alexander’s death was caused by Sudden Unexplained Death in Childhood. The report did say they couldn’t rule our cardiac arrhythmia (such as that caused by Long QT syndrome). I’ve been in touch with the Long QT study at the Mayo Clinic to check on the status of Alexander’s case review with them but haven’t back yet.
So, for now, we still have no answers. I’m a bit numb and feeling a wide mix of emotions. I’ll probably reread the report and then schedule a conference call with Dr. Krous in a few weeks to review his findings. For now, I just need to let the report conclusion to soak in.
Thanks for sharing the update Michelle. So frustrating to not know. Hugs to you and Dan.