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The statistics provided shed light on the prevalence and impact of Congenital Diaphragmatic Hernia (CDH) both in the United States and globally. Here is a summary of the key figures:

U.S CDH Stats:

  • Approximately 6 million pregnancies occur every year in the United States.
  • Out of these pregnancies, 4,058,000 result in live births, and 1,995,840 experience pregnancy losses.
  • The incidence of CDH is approximately 1 in 2500 births, meaning over 1600 babies are born with CDH every year in the United States alone.
  • With a 50% survival rate, about 800 of these babies will not survive.
  • Each day, at least 4 families in the United States receive the devastating news of a CDH diagnosis.

Global CDH Stats:

  • Globally, 147 babies are born with CDH every day.
  • The World Census Bureau estimates that over 350,000 babies are born in the world every day, with 257 people born every minute globally.
  • Every 10 minutes, a baby is born with CDH.

Other Global CDH Facts & Statistics:

  • The cause of CDH is still unknown, but it has been associated with several genetic anomalies.
  • Vitamin A diet deficiency has been known to cause CDH in lab rats.
  • The link between CDH and certain drugs like thalidomide, quinine, phenmetrazine, and nitrofen has been suggested but not proven.
  • Approximately 20% of CDH pregnancies are also diagnosed with polyhydramnios (excessive amniotic fluid).
  • CHERUBS and the CDH Study Group are the only two organizations actively researching CDH on a global scale.

Statistics Among the CHERUBS Membership:

  • CDH has occurred and not occurred in identical twins among CHERUBS members.
  • There are cases of fraternal twins where one baby has CDH and the other is healthy.
  • Some families have had multiple children diagnosed with CDH, with a 2% re-occurrence rate of CDH in siblings without other birth defects or genetic anomalies.
  • CHERUBS has survivors of CDH over 18 years old, with the oldest living survivor being 62 years old.
  • Some members were diagnosed with CDH in utero as early as 10 weeks, and there are cases of individuals diagnosed with CDH after the age of 2, with the oldest survivor being over 40 years old.

These statistics highlight the significant impact of CDH on families worldwide and the ongoing efforts of organizations like CHERUBS to support those affected and conduct research to better understand and manage this challenging condition.

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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