What is CDH?
Congenital Diaphragmatic Hernia (CDH) occurs in approximately 1 in every 2,500 births (1,600 cases in the U.S. each year). The cause of CDH is not yet known. The diaphragm is formed in the first trimester of pregnancy and controls the lungs' ability to inhale and exhale. CDH occurs when the diaphragm fails to form or to close totally and an opening allows abdominal organs into the chest cavity. This inhibits lung growth.
Every patient diagnosed with CDH is different. Survival rates depend on the types and number of organs involved in the herniation and the amount of lung tissue available. There are many surgical procedures and complications that may or may not occur with each individual, including in utero surgery.
Roughly 50% of babies born with CDH do not survive. Of the 50% that do survive, most will endure long hospital stays, feeding issues, asthma and other problems. A few of the survivors suffer from severe long-term medical issues.
CDH occurs as frequently as Spina Bifida and Cystic Fibrosis, yet there is very little research being done and virtually no media coverage.
CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support.
CHERUBS is the original CDH non-profit organization founded in 1995 to help families and medical care providers of children born with CDH.
CHERUBS is the world's first, oldest, and largest CDH non-profit organization. We are truly a grassroots organization - CDH families creating something out of nothing when there were no other CDH group, information and services in 1995. CHERUBS was created to make sure that no family endures Congenital Diaphragmatic Hernia without support or accurate information. Our Board of Directors includes CDH parents, grandparents, survivors, nurses, doctors and the world's top CDH researchers. CHERUBS is run solely by volunteers and donations. At CHERUBS, every CDH family has an opportunity to honor or remember our children while doing good to help others and work together as a CDH community. No other charity in the world has such a respected, educated or experienced group of leaders who care so much about the CDH community.
CHERUBS has had many accomplishments and projects in our first 15 years. We are the first charity to promote CDH research, awareness and support. We created a model organization for other groups with our services, structure and projects. We created the first CDH newsletter and the first on-line listservs and forums for CDH families. CHERUBS is a founding member of ACDHO. Our CDH Research Database is the largest database in the world created by CDH families to compare medical histories that hopefully will assist the CDH research community. CHERUBS has spoken at International CDH Study Group meetings, given speeches around the country, given interviews for 20/20 and Mystery Diagnosis as well many other national media outlets. We hold the International CDH Conference for families and researchers. Along with several other CDH organizations and 1000's of families, we designed the official Congenital Diaphragmatic Hernia Awareness Ribbon and took a stand against the trademark on "Congenital Diaphragmatic Hernia Awareness". We created awareness products, the first CDH awareness store, logos and we proclaimed the cherub as the official international symbol of Congenital Diaphragmatic Hernia to represent those CDH babies who do not survive. And we have done it all through the hard labor of dozens of caring volunteers who want nothing more than to make the journey of CDH a little bit easier for families.
In 2010, as we celebrate 15 years of non-profit service to the CDH community, we continue our good work through more conferences and get-togethers, more on-line services and more research. We have kicked off the year with our "Save The Cherubs" CDH Awareness Campaign, 2 Congressional Bills to benefit CDH and other cause and launched our new web sites.
We are proud to serve over 3400 families in 38 countries and all 50 states affected by CDH since our creation. Through our dozens of free ground-breaking services and the friendships made within our member community, CHERUBS has positively affected the lives of 1000's of CDH families and inspired many new CDH charities and projects who have followed in our footsteps. We will continue to lead until Congenital Diaphragmatic Hernia is no more. We are devoted to finding the cause, prevention and best treatments for CDH.