New to this sight. Looking to connect with others going through the same thing

[Beth33]

My son was diagnosed with aortic stenosis as an infant. We have been going to our cardiologist every year for an echo, ekg and chest X-ray. My son will he fourteen in two weeks. At our last visit we were told he will need a valve replacement in the next few months... They said he wasn't a candidate for the balloon procedure because his valve is leaky and that would make it worse. It was quite a shock because he has always been asymtomatic. He has always played football, baseball and basketball but of course he isn't allowed to play anymore until we intervene. The doctor said he will never play football again but can possibly one day after the operation be able to play baseball or basketball if he is doing well. He still walks to the park to watch his friends play everyday. And it breaks my heart. We have a consult with our surgeon at Miami Children's Hospital on the fifteenth to go over our options. Mechanical vs tissue etc. I know that there are pros and cons to each...haven't decided on anything yet. I'm really looking to connect with others that may have had children who have had the surgery or anyone for that matter. I have questions about what to expect after surgery etc.. I am so scared. I love my son with all my heart and he is such a great kid. Im so afraid this will just be the start of other problems down the road. Im freaking out about it. If anyone has any advice or answers I would really appreciate it.

 

[neil]

hi am sure others who can help you more will be along, lyn who is a great member will maybe give you some advice, chin up ,neil

 

[Lynlw]

Hi Beth, welcome altho i'm sure you were hoping not to need a group like this for many years. I'm also the mom, but my son Justin has been having surgeries all his life, so it's a little different. One of the best groups I know of for parents of kids having/had surgery for CHDs is the ones at the Congenital Heart Information Network (TCHIN) There are quite a few different lists but the main, most active one is PDHeart that most people post at beside the other groups. http://tchin.org/support/index.htm Actually this is a great time to join, since alot of the 'older' members are updating how their "Kids' well young adults now, are doing.

I know it is very hard when you have to make decisions for your child and hope you make the best ones for them. The best advice i can give is to make sure your son is involved in all the decisions, since he is old enough and it will help alot to learn all the things to consider, so when they are in charge of their healthcare, it isn'new and confusing, well its always confusing , but better.