Aortic Dissection Death of 12 Year Old with Genetic Heart Condition

[Arlyss]

From the Chicago area,

http://www.suburbanchicagonews.com/newssun/news/403796,5_1_WA28_DEATHUPDATE_S1.article

The nature of the genetic heart condition this child had is not specifically mentioned, but I am concerned about those with BAVD who are vulnerable to dissection of the aorta.

There is often a question about when children should be screened. Reports like this, as well as the experience of the families that are shared on this Forum, tell us how important screening can be. Children are not exempt from aortic dissection. It is devastating to read that in other ways, this was a healthy 12 year old.

Arlyss

 

[Susan BAV]

Tragic. And as they wrote, it could have happened as he walked down the street. This is exactly why my doctors would not allow me to participate in p.e. in public school; however in my case the doctors were first worried about my now-repaired coarctation. They said I was like a plugged hose, and could internally pop at any weak spot. But kids will find a way to run and play, as I did every chance I could. I looked fine and I felt fine and I really didn't quite believe my doctors' worries were warranted.

 

[WayneGM]

Terrible news. My thoughts are with the family.

 

[briansmom]

I don't even know what to say! My son's original docs told me that his case was so rare that no one could have figured it out. Spend a little time on this forum and you will know how wrong they are. I am so grateful that I still have my son, but I am so disappointed to hear that pediatricians still aren't getting a clue.

 

[Praline]

Four years ago , my husband's son died from aortic dissection. He was 27 and had no idea anything was wrong with his heart.
It brings home one more time the fact that we are lucky that we could be fixed.

 

[aussigal]

Stories like this one are exactly why I am glad that I pushed and had our 3 boys examined for BAV. Now, we know that 2 of them have it. Hopefully we continue to educate them. I trust them to adjust their activity if needed and to keep up with Cardio appointments etc. when they are all grown-up. Thankfully I made it through a rough time in surgery/hospital and that made a strong impression on the kids.

I really truly hope that everyone here with BAV has tried their best to educate their families so we can try avoid a story like that happening to one of us here.