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U.S CDH Stats

There are approximately 6 million pregnancies every year throughout the United States:

  • 4,058,000 live births
  • 1,995,840 pregnancy losses

1 in 2500 babies is diagnosed with CDH

Over 1600 babies are born with Congenital Diaphragmatic Hernia EVERY YEAR in the United States alone.

With a 50% survival rate, 800 of those babies will die.

Today, and every day, at least 4 families will be devastated with the news of CDH.

Global CDH Stats

147 babies will be born with CDH every day
The World Census Bureau estimates that in 2008 over 350,000 babies are born in the world every day

Every 10 minutes a baby is born with Congenital Diaphragmatic Hernia
IDB (International Database) from the U.S. Census site, 257 people are born every minute globally.

Over 700,000 babies have been born with CDH since January 1, 2000!

Other Global CDH Facts & Statistics

No one knows how to prevent CDH.

The cause of CDH is still unknown.
It has been associated with several genetic anomalies such as Fryns Syndrome, Cornelia deLange System, Trisomy 18, 21, & 22.

Vitamin A diet deficiency is known to cause CDH in lab rats.
It has been suggested in some medical journals, but not proven, that thalidomide, quinine, phenmetrazine, and nitrofen may also cause CDH.

20% of CDH pregnancies also are diagnosed with polyhydramnios (an overabundance of amniotic fluid).

CHERUBS and the CDH Study Group are the only 2 organizations actively researching Congenital Diaphragmatic Hernia on a global platform. CHERUBS is the only organization offering global support to families of children born with CDH, with members in 38 countries.


Statistics Among the CHERUBS Membership

CDH has both occurred and not occurred in identical twins.

We have many sets of fraternal twins where one baby has CDH and the other healthy.

3 families out of 2500 have had 3 children each with CDH. The re-occurrence rate of CDH in siblings, without any other birth defects or genetic anomalies is 2%.

Our oldest living survivor of CDH is 62 years old. We have over 100 survivors over 18 years old.

3 of our members, all male, have had 6 CDH repairs each.

CDH has been diagnosed in utero as early as 10 weeks for several members.

Many adult survivors have gone on to have healthy babies and pregnancies. Only 2 families have both a parent and a child born with CDH.

Several members were diagnosed with CDH after 2 years old, with the oldest over 40 years old.

American Pregnancy Organization
World Population Balance
International Database on U.S. Census Bureau

Per all the false claims (IRS, State of NC, Google, MSN, Yahoo, Cafe Press, Zazzle, etc) made by Elizabeth Doyle-Propst of Breath of Hope, Inc to many different companies and search engines we are now posting the references and origins of these statistics and information – despite that most of this information is common knowledge to those who work with or are personally affected by CDH – we have posted the following to try to deter any other complaints:

1 CDH strikes 1 in every 2500 babies

A population-based study of congenital diaphragmatic hernia. – Torfs CP, Curry CJ, Bateson TF, Honoré LH. California Birth Defects Monitoring Program, Emeryville 94608. Congenital Diaphragmatic Hernia; Prem Puri; Current Problems in Surgery; Volume XXI Number 10 October 1994

Medical Research Society; Communications for the Spring Meeting of the Medical Research Society, held in conjunction with the Academy of Medical Sciences and the Royal College of Physicians, London on 28th February 2005 at the Royal College of Physicians, London.

2 There are more babies born with CDH than with Cystic Fibrosis (1 in 3900) and it’s almost as common as Spina Bifida (7 in 10,000)

Alder Hey Doctors Leading the Way on Child Health; Royal Liverpool Children’s NHS Trust; 2001

Royal Liverpool Children’s NHS Trust – Alder Hey; Research Board Meeting; Royal Liverpool Children’s NHS Trust; 2004

Improving lung growth in babies before birth – Edwin Jesudason , Academy of Medical Sciences, Alder Hey Children’s Hospital, Liverpool ; 2003

Fog2 Is Required for Normal Diaphragm and Lung Development in Mice and Humans -Kate G Ackerman, Bruce J Herron, Sara O Vargas, Hailu Huang, Sergei G Tevosian, Lazaros Kochilas, Cherie Rao, Barbara R Pober, Randal P Babiuk, Jonathan A Epstein, John J Greer, and David R Beier

Fetal Surgery for Congenital Diaphragmatic Hernia: The North American Experience – Darrell L. Cass MD Texas Center for Fetal Surgery, Texas Children’s Hospital and the Michael E. DeBakey Department of Surgery, and Department of Pediatrics, Baylor College of Medicine, Houston, TX.

Small lungs and suspect smooth muscle: congenital diaphragmatic hernia and the smooth muscle hypothesis. – Jesudason EC. Department of Pediatric Surgery, Alder Hey Children’s Hospital, Division of Child Health, School of Reproductive and Developmental Medicine, University of Liverpool, Liverpool, UK.

Congenital diaphragmatic defects and associated syndromes, malformations, and chromosome anomalies: A retrospective study of 60 patients and literature review – Gregory M. Enns, Victoria A. Cox, Ruth B. Goldstein , David L. Gibbs , Michael R. Harrison , Mahin Golabi
Department of Pediatrics, University of California, San Francisco, California
Department of Radiology, University of California, San Francisco, California
Fetal Treatment Center, University of California, San Francisco, California

3 CHERUBS is working hard to raise Congenital Diaphragmatic Hernia Awareness!

Rainbow of Hope first used this term on-line in July, 2006

So? Blog post by Elizabeth Doyle-Propst in which she concedes that CHERUBS used the term “Congenital Diaphragmatic Hernia Awareness” before Breath of Hope, Inc.

Letter by Stacy Everett-Harding in which she concedes that Jana Llewellyn and Rainbow of Hope used the term “Congenital Diaphragmatic Hernia Awareness” before Breath of Hope, Inc.


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