Hi Leia and Mom, That had to be a scary moment. I can feel for you but being so young makes it a lot harder cause she doesnt understand what could happen. When I feel that way I know to go sit down until it passes. I hope you carry a cell phone with you so you can call 911 if needed. Have you ever taken a CPR course. Might help you to know what to do if needed and save you piece of mind.
And Leia that is a beautiful doll that you have. What is her name? Is it an American Girl Doll? You take real good care of her.
Hope better days to come. Keep you all in my prayers.
Hi - I know how it is as a parent to go through something like this. My youngest son had open heart surgery to fix an aortic coarctation at 6 weeks old. He's two now and doing great but he does have a Bicuspid aortic valve. We take him to the Cardiologist twice a year for an echo..So far so good all his numbers look good and we are hoping that is much later in life that he will need something done. If it's in his younger years we are exploring the ross procedure so everything can still grow.
As recent patient of Aortic valve replacement at 38 I know what's like. I am 100% back to normal and have a very long life ahead of me so when it's time for my son to go through this I will do what I can to help him.
It's hard when it's your baby and you want so badly to protect them from everything. Use this so you can help answer questions for her but also use this site for you too. Ask anything you want and you will be amazed at what you get back. If you want to read my journal as it talks about my experience as well his.
You are adorable. I'm sorry you have a "bad" valve . . . I did too! Same problem you have. I found out about it when I was a little older than you - when I was 8 years old. And guess what? I didn't have to have my surgery until I was 57!! I hope your "bad" valve lasts as long as mine did . . . by the time you're 57 they'll probably be able to fix your valve by waving a magic wand over your chest and making it all better!
Hi Leia, You are so cute. You bet we will all be here for you and your family. If it helps my daughter has aortic stenosis had surgery at 29 3 years ago, and when I came down with same thing, she took her daughter who is now 9 years old and was told she has bicupsed aortic valve. That just makes you special and you will be ok. Good luck at your doctors visit. And Mommy you will be fine also. My daughter was born with the murmur also. She is better now and has 3 kids.
For the long haul