websites for parents of CHD children?

catwoman · Feb 9, 2005

A co-worker has a 3YO son w/ CHD.
I'd like to give her addys of websites, support groups for parents like her.
Anyone?

TIA...

ericaj · Feb 9, 2005

Here's one:
www.tchin.org (a very good site, well moderated, tons of info.)
Alot of hte Children's Hospitals have good info..
If i think of more will let you know.

Erica

Gnusgal · Feb 9, 2005

The one that Erica gave you is the first one to come to my mind as well. She might also look into www.achaheart.org even though it is geared towards adults with CHD. There are other parents that visit to find out from a first hand perspective what their kids are going through.

Also, there are a lot of links at www.congenitalheartdefect.com to various support groups, live and online.

Guest · Feb 9, 2005

Marsha (and those of you who are parents with CHD children),

Another good group is the Yahoo CHD group:

http://health.groups.yahoo.com/group/chdring/

I am a member of that one, which has many "mother hens" who are great and are genuinely concerned about every member of the list and will welcome new members with wide open arms

.

HTH,
Cort, "Mr MC" / "Mr Road Trip", 31swm/pig valve/pacemaker
'72/'6/'9/'81/'7, train/models = http://www.chevyasylum.com/cort/
MC Guide = http://www.chevyasylum.com/mcspotter/main.html

gijanet · Feb 10, 2005

knightfan2691 said:
Marsha (and those of you who are parents with CHD children),

Another good group is the Yahoo CHD group:

http://health.groups.yahoo.com/group/chdring/

I am a member of that one, which has many "mother hens" who are great and are genuinely concerned about every member of the list and will welcome new members with wide open arms .

HTH,
Cort, ]

Hey, I resemble that remark!

Sorry, Marsha, our ISP has been down, so I have been out of the loop. As Erica and Niki said, Tchin is a great site. There are also online support groups affiliated with tchin, some CHD specific, such as an HLHS group. Tchin does charge a $20 yearly fee for the support groups, but that fee is waived if there is a financial hardship. Site perusal is free. There are also some great free Yahoo and MSN groups, as Sir Cort mentioned, for online support. There are others out there - www.pediheart.org, www.heartcenteronline.com, etc., so let me know if you need more.

I could probably direct you a bit better for educational sites if I knew her son's specific defect(s). Feel free to pass on my personal e-mail addy - I think you have it (if not, PM me). There is also a local heart support group affiliated with Children's Medical Center of Dallas, if she would like some face-to-face support. Her son does not have to be treated at CMCD. Some of us are from Cook's and other hospitals, but they have kindly welcomed us into their fold. The website is www.heart-to-heart-tx.org Let me know how I can help. Hugs. J.