Sjogrens syndrome and baby with congenital heart block.

congenital heart

by Tracey_E - 2018-01-25 09:35:51

I was diagnosed in 1970 which was before they paced children  unless it was life threatening, so I was monitored but not paced until I was 27. I tired easily and wasn't able to do sports but other than that had a normal, healthy childhood. Once I got the pacer, I was able to be much more active and I wish I'd gotten it sooner. I got by without it, but I have thrived with it. My advice would be do it when there are things she wants to do but is unable, if she isn't able to keep with the other kids her age. It sounds a lot scarier than it is.

There are some parents here who have paced children. We also have a few members who are young adults now but were paced as babies. I hope they say hi soon! 

Thanks

by MeretePanduro - 2018-01-25 16:21:10

For your commenr TraceyE. We hope it will take a while before nessecary, but we are okay with the PM and the surgery even though it will be tough. My main concern is "what will maybe follow" later on.. 

what may follow...

by Tracey_E - 2018-01-25 21:26:35

I'm 51 and on my 5th pacer. I do crossfit every morning. I own a business, have two children in college, hike or ski every vacation, kayak every chance I get. Last year I ran my first 10k and half marathon plus a half dozen or so 5k's. I rode an Olympic bobsled, roller coasters, ziplines. When I had my last annual cardiolgy check up, my heart function is normal and my heart shows no signs of damage from pacing. I've never had a serious complication. There has never been anything I wanted to do that I could not. 

My doctors have always told  me that this will not affect my life expectancy. In fact, I think it can be a good thing because we are well monitored and more aware so if things change it will be caught quickly. I've never been told to follow a particular diet or exercise but I've always been diligent about both because I don't want to compound my condition with something preventable. I'm healthier and more fit than my husband, sister, friends the same age who don't think about things like their heart health. Me,  I've spent too much time in cardiologist's waiting rooms and I've seen what heart disease looks like up close and personal. I will do everything I can to make sure that's never me. 

I've been both the parent and the kid with the heart condition. Believe me when I tell you that this is much harder on you than your daughter. Kids don't worry or think about the future. If we've never known anything else, this is our normal. I truly never believed it was a bad thing, just different. I still feel that way. I feel blessed to have a problem with a fix, many are not so lucky. 

I know things seem scary now and the future uncertain, but there is no reason to think your daughter won't have a bright, beautiful, perfectly normal life ahead of her.