C.D.H are Not Just Letters of the Alphabet

The letters C.D.H. probably don't mean much to most of you other than possibly Central Dupage Hospital.  Well back in May 2010, the letters C.D.H took on a whole new meaning for my wife and myself.

We found at 37 weeks during a level 2 ultrasound that something was not right with our son.  He was going to be born with a birth defect called congenital diaphragmatic hernia.  What???  The doctor said that from what she could tell, his stomach was where his heart was supposed to be and his heart was on the wrong side of his body. There could also be additional abdominal organs in his chest.  Oh, and by the way...he would only have a 50% chance of survival.  Our world came crashing down around us....What??  We thought had the picture perfect pregnancy.  Our boy was healthy...and even on the larger side (especially considering that his parents are definitely vertically challenged).  

We rushed to change doctors, hospitals and started researching this birth defect that we'd never heard of.  We had (at most) three weeks (most likely less) to figure out our next move...where should our son be delivered?  Chicago, Miami, Ohio?? Wherever we ended up had to have some knowledge of this birth defect.  

We decided to deliver at Evanston Hospital and have our son transported to Children's Memorial Hospital as soon as he was stable.

Needless to say, from the minute our son was born via scheduled c-section to leaving Children's Memorial Hospital 29 days later, it was a whirlwind of doctors' visits, tests, countless drugs, feeding tubes, intubating, extubating, re-intubating, surgery, etc.

Our son was one of the lucky 800 to survive in 2010 after being diagnosed.  That's a scary number.  What's even scarier is that since there is so little awareness of this birth defect, there is less than $2,000,000 per year spent on research to find a cure and/or cause.  

For our full story, please see my guest blog post on PediatricSafety.net. 

This is the first blog in a series I intend to write to help spread awareness of the birth defect CDH  leading up to the Day of CDH Awareness on April 19th.  CDH is just as common as spina bifida and cystic fibrosis yet most people never hear of it until it affects them directly.  CDH affects 1600 children per year in the US (and 50,000 worldwide) with a survival rate of only 50%. 

On April 19th, there will be events taking place around the world to help raise awareness of CDH and to support the much needed $50,000,000 CDH Research Bill including close to 80 people walking in the Chicago Parade of Cherubs.

Stay tuned for future posts where I'll provide additional information on how you can help spread the word and show your support on April 19th.