Doctors, Families Rally for Cure for Deadly Birth Defect

Parent's Perspective News Report of Saint Louis Children's Hospital Press Conference

Saturday, November 22, 2008

Statistics of CDH from Accurate Sources...

Today, almost 5 families will receive the devastating news that their unborn child will have to fight for its life. They have been diagnosed with a potentially fatal birth defect called a congenital diaphragmatic hernia. A congenital diaphragmatic hernia is where the diaphragm in development does not completely close in an unborn baby and organs migrate to the thorax which under normal circumstances is where the heart and developing lungs are located. This defect has a profound impact on lung function.

Thirty-five (35) families a week. One hundred thirty-three (133) families a month. 1800 families a year. Congenital diaphragmatic hernia occurs just as often as spina bifia and cystic fibrois yet most do not hear of it until their child is diagnosed.

Our world population as of 11/23/2008 is 6,738,684,582 taken from:

The birth rate can be as high as 30/1000 to 15/1000 and the birth rate has fallen in the United States over this last year. World estimated birth rate is 19.97 for every 1000 people and this figure was taken from:

Now, if there are 19/1000 - for this year that would equal to: 6,738,684 births estimated in the world.

Congenital Diaphragmatic Hernia has a rate of 1/2000 pregnancies and perhaps 1/2500 births due to miscarriage and heartbreaking interrupted pregnancies. World birth rate for CDH would be 2,695.47.

Now if you take the World Population to see how many people have been affected by CDH - this would be estimated at 1,347,736 people - this is at a rate of 1 in every 5000. They could be family, friends of family or the actual baby affected. We have been contacted by people who just discovered by reading our information that they were born with CDH or the baby they had in the 1960s died of CDH. They have been told hernia that affected the lungs and then gradually put it together reading our information.

So this means that there are over a million out there in this world that have been affected by Congenital Diaphragmatic Hernia. Where are you? We need your help to bring this birth defect to the forefront in medical research and awareness. We need national Awareness Days in each country. We need newly expecting parents to have heard of this birth defect before they have their ultrasound. We need more people educated on a birth defect that still has overall a 50% survival rate. We better care for the children affected so they can continue to be the pioneers who help health professionals not just maintain their health but it improve so they can go forward and make more aware.

Awareness brings Medical Research which in turn increases the survival rates. Prime example of this is Breast Cancer Awareness - from this early detection has increased survival rates. The same will happen for congenital diaphragmatic hernia.

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