Here is what I learned:

The Search for the Ideal Group
A support group is a way to surround yourself with others of a common bond and share your experiences, feelings and thoughts (Klein, 2000). The right group allows you to talk to people who have been in your place and learn from them. Once you begin to share with the group, the feelings of isolation begin to lift and you no longer feel alone in the world.  Finding the “ideal” group can be difficult. It requires you to understand what you are looking for first. Once you know your needs, it is best to start your search by asking friends and family for referrals. Then, as I did, you can go to the Internet.

Ever since Houston’s birth, I have felt isolated from my friends that have children. They get upset when their kids have a cold, mine has had 2 open-heart surgeries, and his future is unknown. I have a hard time relating to the parents of “normal kids.”  I also have questions about his condition that doctors won’t answer. The best place to find those answers is through other parents.  I have great friends and family, but no one understands what it is like to have a child with a life-threatening illness. Often, I feel like they think I am over-reacting. They don’t understand that the flu can kill my child and why it is important to keep people that are sick, etc. away from him. A support group of people in a similar situation will understand where I am coming from…

The support group at Children’s Healthcare of Atlanta seemed like a great idea and a good way to meet local families, which it is.  However, there is a huge variety of heart defects represented through this group. To me, this is a negative point. There are so many different types of defects and levels of severity, I would like to meet and talk to those who have a common defect as Houston.  I would get more support from someone with the same issues. On the other hand, Houston’s defect is rare, so it is difficult to meet someone local.  I have realized that the hospital group won’t address what I want or need in a support group. My son has a very complex and pretty rare heart defect. There are many types of defects out there, and his is one of the more serious ones. Although every defect is serious, someone with a small hole in the heart or valve issues is probably not going to have the same developmental or functional problems that Houston may face. Also, his could prove to be terminal and is not ever going to be “fixed.” I have a difficult time relating to someone who may have a different defect, because every defect is different. I need a group of people that have the same or very similar defect in their child, so I can relate to them and vice versa.  I also want to ask questions of someone who has “been there” already and might have an answer to what is going on, etc. 

In my Internet search, I first found HeartCenterOnline.com. It has proven to be a wonderful resource for information about heart defects. There is something for everyone there, with diagrams, detailed information and additional links. There is also a discussion board for members to post on. I did post a message, and from there, I found a couple of additional groups. Then, I met someone who had a son with the EXACT same defect as my son, which is pretty rare.  From there, Amanda (my new friend) started a new group on yahoo. 

The new group, called HypoplasticRight on yahoo groups is a compilation of 45 members with children who have very similar defects to Houston. The common bond is that they all have a hypoplastic right ventricle and all required the same 3-surgery process to “fix” their hearts.  I actually feel like these people understand. Every last one of them has been there, done that. Even within this defect, there are variations of what a child can have. I have found at least 6 other children on the site that have exactly what Houston has and the others have very similar issues. He has 5 separate defects in his heart and they have the same ones and have the same treatment.  Through just reading the archives in this group, I have found what questions I need to be asking the doctor, what medicines Houston can’t have, what signs to look for to indicate congestive heart failure, what (maybe) to expect in the future, and what the upcoming surgery entails. 

Through the I-search process, I was able to understand what made a good support group, where to start looking for one, how to recognize what I didn’t need, and finally – I found the perfect group!

Now, where do I go from here?  Read on…