Wednesday, July 10, 2013

CHD Resources--Where do you start?

When I was told that my unborn child hasd a congenital heart defect I had no clue what that meant.  Each time I went back to the doctor and something additional was diagnosed I felt more clueless than the previous time I had gone.  So my husband and I began researching online to get as much information as we could on all the diagnosis's that we had been given.  I hope this will help those who are struggling like I did.  Please know I have been there, with your mind swimming with so much information, yet not knowing really where to start or how to process everything.  This is for you, I want you to know I am here to not just to share my journey but to help others on the way.  Please see below for a few of the sites that we found Extremely helpful in our beginning journey.

This is a fantastic site.  Once you bring up the site I found it easiest to go to the search engine and type Congenital Heart Defects.  From that the next screen you can narrow your search to your specific needs.  This site has a lot of details.  I still refer back to this site today.
   1. It has the diagnosis definition
   2. Description
   3. Demographics
   4. Treatment
   5. Prognosis
   6. Parental Concerns
   Plus more.....

This is also another good site.  I did the same thing as the previous site, using the search engine. This site has some of the same items as above plus diagrams and pictures of the specific diagnosis.  I found this extremely helpful in determining what a normal heart looks like and what my unborn child's heart would look like.
     1. Facts about diagnosis
     2. Specific heart defects
     3. data/statistics
     4. Definitions
     5. Pictures and diagrams----nothing graphic, so no need to be concerned.

If you are looking for support groups, advocacy, plus information and brochures for CHD awareness this is a good site for you.
     1. Advocacy
     2. Community Center
     3. Brochures for CHD awareness
     4. Resource room
     5. Support Groups
     6. Information

Blessings until next time!