Journal – Feb. 25, 2004

Heather Abner

This week, I have been visiting web groups that I think might be interesting to join. I have just about decided through my search that an online chat group might be the best support for me. I sort of like being somewhat anonymous. Whenever I talk to people face-to-face about Houston’s issues, I end up crying. Of course, in a support group, that would be fine, but I ended up feeling worse than when I started (and I hate to cry in public!!!) So, I have visited 3 groups that I think could be beneficial, and a few that weren’t, so I won’t even mention then (or should I?) I am not really sure how to DED a chat group experience, so I will just do it like an interview or a book…

DED #1 – HeartCenterOnline At www.heartcenteronline.com under Message Boards, Congenital Heart Defects

Site contains a lot of info about CHDs	I feel like I have learned more from browsing this site than I learned from the cardiologist. VERY informative. Graphs, drawings, charts, etc. are the best I have been able to find and understand.
Message board group contains families from many defects	Like the group at the hospital, this site covers all types of defects. Although I didn’t like that at the hospital, it doesn’t bother me as much here, because there are also a lot with similar defects as what Houston has. There are also some with defects that are even more complicated…which actually makes me feel better about our situation. (awful, I know)
Some members of the group are very knowledgeable	There is one member in particular that has connections with every defect possible. Every time someone new introduces themselves, she tells them who else has a child with the same defect and how to contact them. She is a great resource to have. There are also adults who had CHD at birth and can give you info on how it is to live with one.
A large number of participants	Although it would be a negative factor to me to have a too-large in person group, a large group online to me is good. You don’t “meet” everyone at once, but you can get a variety of info from every direction.
Too many participants??	I just said that it is good to have a large number, but it is not as personal when you do. I like the variety, but I am still looking for the right fit for me….

DED #2 – yahoo groups – Hypoplastic Right group

Specific to families of children with a hypoplastic right ventricle	This is Houston’s defect. Only families with that defect are invited to join. I was invited from someone I met at heartcenteronline (from above). I LOVE that these people have the EXACT issues that we have.
Older children and a few adults	The group has 40 members, most of whom have children that are 2 to 6 years old, but there are actually 2 “adults” (25 and 22) and parents of a 14 year old and 15 year old. The 25 year old is the oldest survivor that I have talked to with this defect. To me, I need to know that there are some “older” patients out there. She has some issues that she is having to overcome now, that we will probably be going through in the future.
Understanding	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.
Preparation and knowledge	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. I can’t explain how helpful this has been…

More….

DED #3 – www.parentsplace.com under “heart defects”

Many of the same participants from the above 2 groups	One thing I have learned is that I am not the only one looking for info. I have “run” into many of the same people on the different boards that I have browsed. Although it is good to meet them, I don’t need to meet them in every group.
Many parents of children that died	Pretty depressing. I can’t even imagine their pain, and I don’t want to right now. I don’t want to go there…
A variety of sub-headers in chat listing	There are sub-groups that you can join, which is interesting because there are topics that I probably wouldn’t have thought of. I can see myself “lurking” here, but probably not posting. I don’t like the format or really understand how the sequence of posts go. It is a little hard to follow.

I am probably pretty ready to start my final project. I have read as much info as I can, and I think that I have found the best answer to my question. I know which group is right for me, and I have already started using it…