FAQs About The Faces of CHD


Have you heard about The Faces of CHD Pinterest Awareness Challenge and want to know more?  Here are the answers to some of the questions that are frequently asked.

Q:  What is Pinterest?

A:  Pinterest is a virtual bulletin board, where people can “pin” pictures with captions to be viewed and shared by others.   Here’s how Pinterest’s “About” page describes how it works:

Pinterest lets you organize and share all the beautiful things you find on the web. People use pinboards to plan their weddings, decorate their homes, and organize their favorite recipes.

Best of all, you can browse pinboards created by other people. Browsing pinboards is a fun way to discover new things and get inspiration from people who share your interests.

Q:  When I click on the Pinterest links, it tells me I need to be a member to view it.  Why?

A:  Pinterest requires a membership, much like Facebook and other social media.  It is free, but membership is currently by invitation only.  You can request an invitation from Pinterest, but it will take a few weeks.  Or, you can request an invitation from an existing member, which will be faster (emails for the board’s editors are listed at the end of this post).

Q:  I want to have myself or my child included on The Faces of CHD Pinterest Board.  How do I do that?

A:  You can be included on The Faces of CHD Pinterest Board whether or not you have a Pinterest account.  Here’s how:

  • If you have a blog or care site that can be viewed publicly:  email one of the editors of the board.  (You’ll find our addresses below.)  In the email, include a direct link to a post that tells about your experiences with CHD.  It’s okay if it is a post you published in the past.  (Here’s the post I pinned from my own blog, if you need an example.)  Important:  along with the link, please include a brief (10 sentences or less) description of your child’s defect (or yours, if you are an adult), surgeries, treatments, and anything else pertaining to life with a CHD.  The board editors love getting pin requests, but it takes us extra time to create a description if we have to read your blog to do so.
  • If you do not have  a  publicly viewed blog or care site:  please email us a .jpg file picture of your child (or yourself) and include a brief description of the CHD, as described above.  We can upload your picture and description to Pinterest.  The only difference will be that when people click on your picture, they will not be directed to another site for more information.  Occasionally, with your permission, we may feature one of your children on our own blogs so that their pin has a link to someplace that will offer more information about CHDs.

Q:  I’m a Pinterest member trying to pin my child’s picture to the board, but it won’t let me.  What am I doing wrong?

A:  Nothing!  Boards are designed so that only those who have permission to do so can pin to the board.  Currently, Becca, Stefanie, and myself are the only people who can add pins to the board.  This is so that we can monitor the content and make sure that the good intentions of the board aren’t ruined by unscrupulous pinners.  If you have a Pinterest account, you are welcome to create a pin of your child to place on one of your own boards.  Email us the URL of your pin, and we will repin it to our board.

Q:  There are a lot of heart families I know from our local support group who should have their faces on this board.  Can I send you their blogs and get them pinned?

A:  No.  We will only accept pictures, pins, and descriptions from the actual heart parents or adult survivor.  Please respect the privacy of individuals.  Not everyone is comfortable having their picture or personal information available online.  By all means tell the other heart families you know about our effort, but let them decide whether or not they would like to participate.

Q:  What does it mean when someone “repins” my picture?

A:  Pinterest has an excellent help page that answers questions like this for members and non-members alike.  For questions about Pinterest lingo, I recommend you stop by and read through their handy tips.

Q:  Can anyone view my child’s pin?

A:  Pinterest is a members-only sharing system.  Only someone with a Pinterest membership can view the actual pin.  However, like anything that is posted online, we cannot guarantee how other Pinterest members will use this privilege.  If you are uncomfortable with having your child’s picture and story online, then we recommend that you choose not to participate in The Faces of CHD Pinterest Awareness Challenge.

Q:  I am the parent of a child who was born with a CHD, but my child died.  Can my child be included on the board?

A:  ABSOLUTELY!  As much as we all love to read about the miracle children, one of the unfortunate realities of CHDs is that not everyone survives.  Some defects are incompatible with life.  Many defects can be repaired, but we are all aware of the risks that come with those repairs.  It is important that we include those who did not survive–like my own daughter, Lily–right along with those who did–like my eight year old daughter, Sariah.

Thank you so, so much for your interest in The Faces of CHD Pinterest Awareness Challenge!  You can read more about the Challenge here.  Please get in touch if you have any other questions.

Our email addresses are beneath our pictures.  Click on our pictures to visit our blogs.