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93532 tn?1349370450

Pediatric Cardiology

Many of you know me from Maternal Child and from the Breastfeeding forums. I have been a member here since June 2003, only then under the username Still_AndiJ. Anyway, while I do not believe I have asked a question since 2003 ;-) and have been here to instead offer support and answers for others after all these years, I do finally have a request.

All three of my boys were born with congenital heart defects, a fact many do not know. My oldest was diagnosed prenatally with a large ASD, which thankfully closed on its own during the first year of life, leaving him with only a Still's murmur. However, my middle son (age 4) and my youngest son (age 21 months) are still dealing with cardiac issues to this day. I have not found a decent place to get answers or support for this, but rather have spent the last few years quietly researching and attempting to answer my own questions when the doctors have none.

Perhaps there exist other mothers or fathers such as myself. Parents who can say, "Hey, my child had that, please do not worry" or "My child had that, this is what you need to be asking."

I believe a forum like this may prove to be helpful for not only myself, but other parents as well and would certainly offer a place of comfort and support.

Everyone who knows me knows I think the number of forums on here has gotten a bit crazy, but given the statistics on congenital cardiac anomalies, I know there are many parents such as myself looking for support.
6 Responses
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229760 tn?1291467870
That is a great suggestion. My son Cooper was born with HLHS on June 6th, sadly he returned to heaven at the tender age of 7wks on July 23rd. I would love to have/had place to talk with other parents about this.  

I going to check out this site! Thanks for suggestion this site!!  
Helpful - 0
10947 tn?1281404252
Hi,

Sorry for the delay on this, but this is a terrific suggestion. We've just added the community at: http://www.medhelp.org/forums/show/302

MedHelp
Helpful - 0
389974 tn?1331015242
Swampy just ran into a person whose grandson, at the ripe old age of 1 year, is getting surgery to correct a congenital problem with his heart. His parents are, understandably, quite nervous about this whole thing.

Swampy tried to tell them that a 1 year old body has the potential for healing that we adults can only dream about, and that this kind of procedure is not unheard of today, but still, they would benefit from a community.
Helpful - 0
Avatar universal
andi i agree, and im sorry i didnt know you and your boys are dealing with this.  i do hope you can find some answers.  
Helpful - 0
93532 tn?1349370450
I know, that is my point. But to have to sift through journals or isolated posts is daunting and time consuming. Having a forum for this very serious topic would be helpful to say the least.

And that was very sweet of you to find that journal, Swampy. Wonders never cease to amaze me sometimes.
Helpful - 0
389974 tn?1331015242
Seems you aren't the only one here with children with heart problems:

http://www.medhelp.org/user_journals/show/19935
Helpful - 0

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