Reflections on the past 25 years by the CDH International team:
The first thing that our charity ever did was create the first printed material for CDH families in the form of a newsletter. I had no idea what to include so I put together what was a basic Parent Reference Guide along with my son’s story. I typed up whatever I could think of that we wished we had known and cut it out and arranged it together on my kitchen table.
My son was then just 2 years old and still trached. But he was stable. And it was time to help other families.
A local printing company put it together as 1995 was pre-desktop computers and my electric typewriter only had 2 fonts. They donated the typesetting services and 250 copies of the blank and white newsletter on blue paper.
Those copies were then sent off to all the CDH researchers that I could locate based on my then 2 years of scouring Duke and UNC’s medical libraries for any journal articles on Congenital Diaphragmatic Hernia that I could find. Also included were letters asking these surgeons to please give patient families the newsletters and the new charity’s information.
Immediately, Dr. Michael Harrison (UCSF), Dr. Jay Wilson (Boston Children’s), Dr. Vincent Adolph (Oschner) and several others responded, offering their support. Our first Medical Advisors were then on board.
25 years later, the Parent Reference Guide still uses some of the text from that first newsletter.
– Dawn Ireland, CDHi President, CHERUBS Founder
