Table Of Contents
Community Support Groups
Several groups operate support groups across the country. Some of these are part of a larger national organization and some are smaller regionally based groups.
Mended Little Hearts has groups across the country and is one of the larger support organizations running meetings and events.
It's My Heart also has groups in many different states and several developing chapters.
The Children's Heart Foundation focuses on research and raising research funds, but has chapters in some states. If there's a chapter near you, it's worth contacting.
This list doesn't include the smaller regional groups, if you know of a group, feel free to list it in the comments at the end of this article for others.
Mended Little Hearts has groups across the country and is one of the larger support organizations running meetings and events.
It's My Heart also has groups in many different states and several developing chapters.
The Children's Heart Foundation focuses on research and raising research funds, but has chapters in some states. If there's a chapter near you, it's worth contacting.
This list doesn't include the smaller regional groups, if you know of a group, feel free to list it in the comments at the end of this article for others.
Using Social Media for CHD Support
Blogging: Start a blog not only gets your story out there to reach other families, but also helps you get things off your chest. Blogging can be a wonderful outlet. For advanced bloggers, a self hosted Wordpress account is recommended. That costs money though, and if you aren't sure of your commitment might not be the way to go. Blogger is extremely easy to set up and get posting. There are several other sites like Tumblr, Posterous, and TypePad. Any of them will do.
Once you have some posts up, start searching for other blogs to connect with. You can type "Congenital heart defects, blog" into Google and many will come up and you'll find others from those sites. Read posts and leave comments that aren't spammy, really read the post and reflect based on what you read. Leave your URL with your name, but don't put it below your comment, some consider that spam.
Twitter: There's a community of CHDers on Twitter that tweet CHD information, questions, and support using the hash tag, #CHD. If you're on Twitter, try using that hash tag, or doing a search for "congenital heart defects" or "congenital heart" to meet people tweeting about CHD. It will take awhile to build your following, but just keep reaching out to people, and searching for people to follow. Also, don't blast links to your blog every five minutes, a few times a day is okay, with once a day best and only if you've posted something new.
Facebook: Many people add other CHD families to their friend's list even if they don't know them. It's a wonderful way to connect, but two points of caution:
1. On Facebook you share a lot of personal information and adding strangers might not be the best idea. You could skim down your profile and delete really personal stuff, or start a new account just for CHD, or just add people to your main account, but do so with caution. If I could do things differently, I would have created a second profile, but my main profile is my CHD profile. I did however take off any personal identifying information and started using my Facebook in a limited capacity. I mainly just post links and pop in to see what a friend or two is up to because my profile is full of so many people I don't know.
2. You're new "friends" might have CHD in common but you might have extremely different religious, political, and parenting views. This might cause your profile to erupt when you post about one of those subjects. And, you might frankly get annoyed or upset at some of the new posts.
To start adding CHD friends, start by approaching people you met in support groups or through other online sites, like blogging, and ask if they'd like to connect on Facebook. They're bound to be friends with other CHD people and you'll start to see them come up in your recommended friend's list.
The other way you could use Facebook for support is to not add anyone to your profile, but to join the pages of CHD groups. There are probably hundreds of them on Facebook. Just do a search for congenital heart disease or congenital heart defects and they'll start popping up.
Once you have some posts up, start searching for other blogs to connect with. You can type "Congenital heart defects, blog" into Google and many will come up and you'll find others from those sites. Read posts and leave comments that aren't spammy, really read the post and reflect based on what you read. Leave your URL with your name, but don't put it below your comment, some consider that spam.
Twitter: There's a community of CHDers on Twitter that tweet CHD information, questions, and support using the hash tag, #CHD. If you're on Twitter, try using that hash tag, or doing a search for "congenital heart defects" or "congenital heart" to meet people tweeting about CHD. It will take awhile to build your following, but just keep reaching out to people, and searching for people to follow. Also, don't blast links to your blog every five minutes, a few times a day is okay, with once a day best and only if you've posted something new.
Facebook: Many people add other CHD families to their friend's list even if they don't know them. It's a wonderful way to connect, but two points of caution:
1. On Facebook you share a lot of personal information and adding strangers might not be the best idea. You could skim down your profile and delete really personal stuff, or start a new account just for CHD, or just add people to your main account, but do so with caution. If I could do things differently, I would have created a second profile, but my main profile is my CHD profile. I did however take off any personal identifying information and started using my Facebook in a limited capacity. I mainly just post links and pop in to see what a friend or two is up to because my profile is full of so many people I don't know.
2. You're new "friends" might have CHD in common but you might have extremely different religious, political, and parenting views. This might cause your profile to erupt when you post about one of those subjects. And, you might frankly get annoyed or upset at some of the new posts.
To start adding CHD friends, start by approaching people you met in support groups or through other online sites, like blogging, and ask if they'd like to connect on Facebook. They're bound to be friends with other CHD people and you'll start to see them come up in your recommended friend's list.
The other way you could use Facebook for support is to not add anyone to your profile, but to join the pages of CHD groups. There are probably hundreds of them on Facebook. Just do a search for congenital heart disease or congenital heart defects and they'll start popping up.
Online Groups and Forums
The Adult Congenital Heart Association message board.
Babies and Children with Heart Defects from BabyCenter.com
CarePages CHD Forum (not very active)
Congenital Heart Defect Support Group on Yahoo! Groups
Babies and Children with Heart Defects from BabyCenter.com
CarePages CHD Forum (not very active)
Congenital Heart Defect Support Group on Yahoo! Groups
Grief Support
Thankfully, due to medical advancements, more people are living into adult hood and enjoying life spans. But, the reality must be faced; CHD is still one of the most common killers of infants and adults - killing about 4000 babies under 1 each year.
Hopefully you'll never need it, but grief support has to be addressed here, because losing a child or loved one to heart issues is so devastating and having support is so important.
The Compassionate Friends offers local support groups and online resources.
A website called Faces of Loss, Faces of Hope includes a forum and stories from other people that have lost infants and unborn babies.
Losing a child brings a pain beyond words, don't be afraid to seek local counseling. Counseling is available in many communities at a sliding scale rate. When I lost my child, a local place gave me a free counseling visit. It's worth calling, or asking a friend to research.
Speaking of friends, many of them might not know how to help you. I wrote a series about helping a friend through baby loss that you can send to them.
The procedure for finding support through social media is similar start telling your story and start a blog. Start a Twitter account and search for words like "baby loss" or "child loss" and reach out to others. Faces of Loss, Faces of Hope funs a Twitter account. Search Facebook for similar terms and start writing to people and answering their questions in group pages.
Hopefully you'll never need it, but grief support has to be addressed here, because losing a child or loved one to heart issues is so devastating and having support is so important.
The Compassionate Friends offers local support groups and online resources.
A website called Faces of Loss, Faces of Hope includes a forum and stories from other people that have lost infants and unborn babies.
Losing a child brings a pain beyond words, don't be afraid to seek local counseling. Counseling is available in many communities at a sliding scale rate. When I lost my child, a local place gave me a free counseling visit. It's worth calling, or asking a friend to research.
Speaking of friends, many of them might not know how to help you. I wrote a series about helping a friend through baby loss that you can send to them.
The procedure for finding support through social media is similar start telling your story and start a blog. Start a Twitter account and search for words like "baby loss" or "child loss" and reach out to others. Faces of Loss, Faces of Hope funs a Twitter account. Search Facebook for similar terms and start writing to people and answering their questions in group pages.
Support Books
 | The Parent's Guide to Children's Congenital Heart Defects: What They Are, How to Treat Them, How to Cope with Them Amazon Price: $34.42 List Price: $14.00 |
 | The Heart of a Child: What Families Need to Know about Heart Disorders in Children (Johns Hopkins Press Health Book) Amazon Price: $11.76 List Price: $21.95 |
 | Matters of the Heart - Volume 1 Amazon Price: $17.89 List Price: $22.95 |
Online Guides for Newly Diagnosed CHD Families
A couple of groups have created online guides, similar to this one, or even packed with much more helpful information for getting support. Bookmark them or print them off for future reference:
American Heart Association: The Impact of Congenital Heart Disease- There's a lot to take in on this site. But, some of the helpful pages to look for are a downloadable CHD information sheet and the web booklet, "If You're Child Has a Congenital Heart Defect."
"It's My Heart," is a guide from The Children's Heart Foundation for newly diagnosed patients and families.
A list of resources from Little Hearts, Inc.
California Heart Connection's Resource Guide for Congenital Heart Patients.
University of Michigan's Guide to Caring for Your Child for CHD parents.
American Heart Association: The Impact of Congenital Heart Disease- There's a lot to take in on this site. But, some of the helpful pages to look for are a downloadable CHD information sheet and the web booklet, "If You're Child Has a Congenital Heart Defect."
"It's My Heart," is a guide from The Children's Heart Foundation for newly diagnosed patients and families.
A list of resources from Little Hearts, Inc.
California Heart Connection's Resource Guide for Congenital Heart Patients.
University of Michigan's Guide to Caring for Your Child for CHD parents.
Family Matching
A couple of groups offer a formal family matching process. A few places to write and introduce yourself:
Little Hearts, Inc offers parent matching services.
The group It's My Heart also does family matching.
Parent matching from Saving Little Hearts.
Informal parent matching
You can do your own parent matching by searching for families online and writing them a note introducing yourself. The website Carepages has many CHD families and is a good place to start.
Little Hearts, Inc offers parent matching services.
The group It's My Heart also does family matching.
Parent matching from Saving Little Hearts.
Informal parent matching
You can do your own parent matching by searching for families online and writing them a note introducing yourself. The website Carepages has many CHD families and is a good place to start.
Other Local Resources
I read about a lot of families that found each other through their local hospitals and visits in and out of the hospital. If you're able while you or your child is in the hospital, reach out to families next to you. Friendships struck up in the NICU can last a lifetime.
Talk about congenital heart defects with family and friends. One of them might one day lead a family your way that is dealing with similar issues.
Just being active and talking about CHD makes you visible and a beacon to others dealing with heart defects.
Talk about congenital heart defects with family and friends. One of them might one day lead a family your way that is dealing with similar issues.
Just being active and talking about CHD makes you visible and a beacon to others dealing with heart defects.
Knowledge is Power
Educating is a great support. CHD is a complex topic because it affects such a wide range of people. Good support might come from feeling more educated about the topic.
CHD Links
- Adults Living with Congenital Heart Defects
Currently, there are approximately one million adults in the United States living with congenital heart defects (CHD). Due to increased survival, this number increases by about 5% every year. These numbers... - Why spreading awareness of congenital heart defects ...
I've read people's thoughts and was surprised. Some people think spreading awareness of congenital heart defects shouldn't be a priority or a goal. Others take it a step further and say awareness isn't needed.... - Congenital Heart Defects .com
- Congenital heart defects in children - MayoClinic.com
Congenital heart defects Comprehensive overview covers symptoms, causes, treatments of heart defects in children.
Immediate Questions?
The congenital heart defects forum on BabyCenter is one of the most active for immediate questions.
Also for rather quick turn around, if you're on Twitter, use the #CHD hash tag after a question. Quite a few people monitor the hash tag and give answers. I myself try to answer questions or point people to resources.
