Anyone have a child with a heart defect?

[wife-n-mommy]

Anyone have a child born with a heart defect that required surgery?
Auriana has Complete AV Canal Defect. She will need open heart surgery around 3 months old. She's not due to be born until October, but I'm trying to talk to people who have been through it befor so I can prepare myself better.
Thanks

[Larissa]

I have no experience, but I just wanted to offer and lots of prayers and good wishes for your family and baby Auriana.

[Carlye<3Sailor]

Carters heart defect hopefully wont need surgery - they are hoping the hole will close on its own... But I know at least a little bit how scary it can be when they tell you somethings wrong with your baby

i fully believe you will find the strength to pull you through!!

[USMCSGTsGirl1239]

I had a congenital Atrial Septal Defect that they didn't find until I was approx 15. And if I hadn't of gotten mono, they probably wouldn't have been looking decently enough to find it. Most of them close on their own, but mine, even after all that time, and producing very little irregular murmur, was just over the size of a quarter.

I was SUPPOSED to have open heart surgery, but I didn't. I didn't want to be sliced open and have a hideous and visible scare on my chest if I could help it, and I didn't want to miss anymore school than the 4 months I had with Mono. So, I got on google, and researched European clinical trials, and found a device for ASD's and VSD's that can be inserted through a catheter in your leg, which seals the hole, and the heart tissue grows in around it.

I was in and out of the hospital within a day and a half. I had 3 follow-up visits in the next 1.5 years, took baby aspirin twice a day for the same time period, and now I don't even worry about it. They even told me at the last follow-up appointment that the pre-dentist antibiotics were no longer necessary.

I carry a card in my wallet, just in case I get into an accident and people don't realize what it is when they take X-rays or an MRI but that's the only reminder I have.

I and know that you will find the strength to get through this with your daughter, and determine the best course of action for her.

[cyndilou]

Originally Posted by USMCSGTsGirl1239 I had a congenital Atrial Septal Defect that they didn't find until I was approx 15. And if I hadn't of gotten mono, they probably wouldn't have been looking decently enough to find it. Most of them close on their own, but mine, even after all that time, and producing very little irregular murmur, was just over the size of a quarter. I was SUPPOSED to have open heart surgery, but I didn't. I didn't want to be sliced open and have a hideous and visible scare on my chest if I could help it, and I didn't want to miss anymore school than the 4 months I had with Mono. So, I got on google, and researched European clinical trials, and found a device for ASD's and VSD's that can be inserted through a catheter in your leg, which seals the hole, and the heart tissue grows in around it. I was in and out of the hospital within a day and a half. I had 3 follow-up visits in the next 1.5 years, took baby aspirin twice a day for the same time period, and now I don't even worry about it. They even told me at the last follow-up appointment that the pre-dentist antibiotics were no longer necessary. I carry a card in my wallet, just in case I get into an accident and people don't realize what it is when they take X-rays or an MRI but that's the only reminder I have. I and know that you will find the strength to get through this with your daughter, and determine the best course of action for her.

Wow, that is really good to know. My DD has VSD. She is 10 and it is 4MM. They have told us we can just wait and see how she does. She does not have any problems right now, so we just watch it for now.

OP: I hope that everything goes good with your baby. I have a friend whose baby had open heart surgery done as soon as she was born and she did just fine. I am not sure what kind of heart issue she had though. I will keep yall in my prayers.

[Carlye<3Sailor]

[QUOTE=cyndilou;2586796]Wow, that is really good to know. My DD has VSD. She is 10 and it is 4MM. They have told us we can just wait and see how she does. She does not have any problems right now, so we just watch it for now.

QUOTE]

Thank you for writing that, Carter has VSD too and I get worried for him even though they told me he shouldnt see side effects from it and the hole is tiny, Comforting to hear she is 10 and hasnt even been affected by it!

[USMCSGTsGirl1239]

http://www.amplatzer.com/

If anyone wants to look around. It's really neat. I have my entire procedure on CD somewhere...

It is now FDA approved, at the time I got it, it wasn't... and there is even now a different but similar device used in Canada and Europe which uses materials which plug the whole, but dissolve over time as the heart tissue grows in.

I'm a when it comes to medical innovation like that.

[*Kate*]

I don't personally, but my DDs godmother has a son that was born with two heart defects. If you PM me I will send you a link to their care page so you can read his story. It's been a rough road, but things are looking up for now. I am sure the momma would be happy to answer any questions if you had any too.

I hope you can find someone to help you through this Katie.