Today is the 3rd day of Congenital Diaphragmatic Hernia Awareness Month.
And today, our CDH families are in an uproar. A "news reporter" wrote an Op Ed piece about Congress and included our Senate Resolution. While that wouldn't have been bad, the article itself made light of CDH and offended many of our families. Below is an open letter that was written by Felecia Woodruff, CHERUBS Awareness Committee Leader to the author of the article, James Warren, of New York Daily news:
Dear Mr. Warren,
Families affected by Congenital Diaphragmatic Hernia have been fighting for public Congenital Diaphragmatic Hernia Awareness for many years now. On March 25th, 2015, Senator Jefferson “Jeff” Sessions from Alabama, introduced the bill and congress approved the resolution S.Res. 115: A resolution designating April 2015 as “National Congenital Diaphragmatic Hernia Awareness Month” for the 4th consecutive year.
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.A volunteer at CHERUBS- The Association Congenital Diaphragmatic Hernia Research, Awareness and Support read an article posted by James Warren at New York Daily News on March 29th, 2015 and was in total shock and disbelief that someone would poke fun of such a horrible birth defect leaving affected CDH families in tears.
The article starts off stating...
And closes with...
Comments to the article are even worse. One comment states...
"As I live and breathe! Thank you, GOP controlled Congress, for making April Hernia Awareness Month!" "Let the month of May become Clown Appreciation Month, so giant red shoes will fly off the shelves across the land and we as a nation can bow our heads in solemn prayer and gratitude to the biggest Bozo, Mr. Speaker, John "Bozo" Boehner.".
Thanks James Warren and New York Daily News for making Congenital Diaphragmatic Hernia Awareness Month a mockery. Our families deserve way better than this. These babies need to be heard. Click here to read the full article. To learn more about Congenital Diaphragmatic Hernia visit www.cdhawarenessday.org.
To contact James Warren:
To contact New York Daily News:
CHERUBS CDH Awareness Committee Leader