Friday, April 10, 2009

The History of the Official Congenital Diaphragmatic Hernia Awareness Ribbon

The first awareness ribbon or bracelet for CDH was discussed on CHERUBS old listservs in 2004. Because all the colors are taken, we didn't want to impede on any other cause's ribbon or their awareness efforts. Besides, we widely used the "cherub" as our awareness symbol for CDH. We tossed the idea around and talked about it with CHERUBS members but there was no real desire to join in on the awareness ribbon bandwagon.

The very first awareness ribbon for Congenital Diaphragmatic Hernia was a turquoise ribbon created in memory of Drew Lewallen in May, 2006 and posted on Rainbow of Hope. Many of us feel that this is Drew's ribbon - and it is. Permission to use this ribbon on a larger scale for fundraising for 1 organization only and ownership of this ribbon was never given and copyrights belong to Drew's family.

Because of awareness issues now associated with another organization's co-opting of Drew's ribbon and trying to trademark it (twice), most families refrain from using the turquoise ribbon. Most families affected by Congenital Diaphragmatic Hernia view wearing turquoise or a turquoise ribbon as endorsing the trademark and helping to fund and encourage a corporation's bid to profit off their babies' pain and suffering and control awareness of this devastating birth defect. Many families do not want to be walking, talking billboards for something that they find morally and ethically wrong.

The Congenital Diaphragmatic Hernia community needed an awareness symbol that was free, not tainted with any ulterior motives, owned by no one and chosen by CDH families. We also wanted something that belonged to just the CDH community and not several other causes. The turquoise ribbon happens to also be used by many organizations and the public for Addiction Recovery, Lymphedema, Native American Reparations, Sexual Assault, Ovarian Cancer, Anxiety Disorders and more.

We are nothing if not original at CHERUBS and ethically, we could not have used a ribbon color that belonged to another cause or was copywritten by Drew's family. Besides, these CDH babies are so special that they deserve an original awareness ribbon all their own - so we came up with several ideas for an original awareness ribbon.

Members of several organizations voted for many days and a decision was made. The official congenital diaphragmatic hernia awareness ribbon, as voted on by CDH parents and survivors, is baby blue, pink and pale yellow with clouds.

This is the Congenital Diaphragmatic Hernia Awareness Ribbon recognized by the members of the Alliance of Congenital Diaphragmatic Diaphragmatic Hernia Organizations. Is it recognized by CHERUBS, the world's first and largest CDH organization with over 2800 members in 38 countries. It is the ribbon associated with the Congenital Diaphragmatic Hernia Research Study.
Wikipedia recognizes this ribbon. There is even a postage stamp with this ribbon, created February 12, 2008. Not to mention 1000's of items with this ribbon available on our stores and various other sites.

And now, there are personalized Congenital Diaphragmatic Hernia Awareness Ribbons:

If you would like one, please e-mail your child's photo, name and date(s) to and Fer and Barb will make your ribbon as soon as possible.

Some parents are even wearing their CDH ribbons as permanent tattoos:

The Official Congenital Diaphragmatic Hernia Awareness Ribbon is on 1000's of web sites, including those belonging to CDH organizations and the CDH Blog Ring.

We are putting together a project about the Official Congenital Diaphragmatic Hernia Awareness Ribbon and would love to use your photos. Please send in photos related to this ribbon, whether it's you wearing a hat with the ribbon, or your tattoo or standing beside your car magnet or beside your cherub's NICU bed with a ribbon posted beside it. Please send them to

We are also putting together a list of all the web sites that post this ribbon. If your web site is posting this ribbon please comment to this blog post with the URL to your site.

And feel free to comment and tell us how you are using this ribbon!

No comments: