The congenital heart defect (hole in his heart-VSD) that was repaired with open heart surgery when he was four made him more susceptible to sudden cardiac death.

That's scary. I have an intraventricular septal defect. Never needed surgery, but still.

On the lighter side, a co-worker (NOT ME!) had a demonstration of the law of unintended consequences in action.

We're in a new office; it has a LEED rating - Silver, I believe - and one of the energy-saving measures is that the lights are activated by motion sensors. Walk into an office or area and the lights click on. Leave for a certain amount of time and they click off. Well, turns out that if you go into one of the restrooms for a little, shall we say, quiet contemplation, the lights go out. Leaving you in the dark. With no windows, no light at all. Until you emerge from the stall and move in the sensor's range.

That's scary. I have an intraventricular septal defect. Never needed surgery, but still.

It is scary. My nephew has had two open heart surgeries because of a birth defect. He's doing fine now, but I worry about him all the time.

My office installed those motion sensor lights in the restrooms. After several complaints and one poor woman freaking the freak out, they removed them.

Thinking about my heart beating scares me. Maria, I'm sorry. It's just so unfair.

Rose is a beautiful name. Welcome, little Rose.

I had a motion sensor light in my office. If I sat at my computer without getting up for half an hour, as one does at sedentary jobs, the light turned off. I got good at waving my arm just right to turn it back on.

It somehow seems really unfair to go through the fear and trauma of cancer and then die unexpectedly of a heart defect.

We're in a new office; it has a LEED rating - Silver, I believe - and one of the energy-saving measures is that the lights are activated by motion sensors. Walk into an office or area and the lights click on. Leave for a certain amount of time and they click off. Well, turns out that if you go into one of the restrooms for a little, shall we say, quiet contemplation, the lights go out. Leaving you in the dark. With no windows, no light at all. Until you emerge from the stall and move in the sensor's range.

My new office is in a LEED-waiting to be rated building. It has the same thing. I asked if the sensor could be added to the stall area. The response. "No, we don't want anyone thinking it's a camera".

I hope having an answer means that there's one less open question to nag at you. But it's a shitty and random answer indeed.

amych, it’s what we all suspected. The kicker is the randomness. It just sucks that it was something that was supposed to fix him, but there’s going to be structural defects after you cut into something to repair it. I just wished we would have known the increased risk, because perhaps it could have been monitored. The overwhelming majority of cases like this don’t present with prior symptoms/arrhythmias It’s one and done.

wow. well at least you have some closure there. it probably doesn't make you feel any better though.

took long enough, but I suppose that's about right time wise.

le n, the closure is good. You’re right, and it definitely doesn’t bring him back. It took about 2 months. Hopkins requested a more detailed autopsy to discern the cause of death. His oncologist was really concerned that an otherwise healthy 40 year old up and died. His major organs went to specialized pathologists and it took time to synthesize all the data. There were also ramifications for the clinical trial. The trial was suspended and Rob’s death was reported to the FDA and the IRB, just in case it was the vaccine. They were allowed to continue the trial with the existing participants after 2 weeks, but they just now received permission to enroll new participants. I’m glad, because I think this melanoma vaccine has promise.

I still owe you an accounting of who knitted/crocheted your blanket! Let me check on something and I'll see if I can post it.

That would be wonderful! I want to thank you all properly. It’s truly lovely and makes me feel so very much loved every time I look at it.

That's scary. I have an intraventricular septal defect. Never needed surgery, but still.

It is scary, and we were a little clueless. I think it’s because Rob didn’t want to alarm anyone, but he took a lot of unnecessary chances over the years. I’m mad at him for that, but who knows if it would have changed anything? The official COD is complex congenital heart disease status post-surgical repair. It’s the repair that raises the risk.

My nephew has had two open heart surgeries because of a birth defect. He's doing fine now, but I worry about him all the time.

sj, as your nephew grows, make sure his parents understand they need to find a cardiologist who specializes in congenital heart defects. This is really important when he reaches adulthood, because that’s when you think the risk has diminished.

It somehow seems really unfair to go through the fear and trauma of cancer and then die unexpectedly of a heart defect.

This. A thousand times, this. We worried about his heart, because of his weight and eating habits, but we never even thought about sudden cardiac death. Ironically, his BP was low-normal, his cholesterol was good, and his sugar was low. He was healthy.

I’m still not convinced that sleep apnea didn’t play a part.

Thank you for the thoughts and good wishes. I ended up crying during yoga yesterday—confluence of results and emotions and music and words spoken by the person who led the class. Kind of embarrassing.

sj, as your nephew grows, make sure his parents understand they need to find a cardiologist who specializes in congenital heart defects. This is really important

Two things worry me. One I wish they hadn't moved out of this area because I'm biased in thinking that Boston Children's really is one of the best places for him if he needs another surgery. Secondly, I worry that as he gets into his teens and twenties and his parents have less control over how he takes of himself, that he won't take the risks seriously.

I ended up crying during yoga yesterday—confluence of results and emotions and music and words spoken by the person who led the class. Kind of embarrassing.

I've cried during yoga a number of times. Sometimes it's about being in that meditative space or sometimes it's what the instructor is saying that triggers a reaction. Please don't be embarrassed!

Thinking of you. Hope we can get together sometime soon.