Congenital Diaphragmatic Hernia (CDH) is a birth defect that occurs when the diaphragm does not fully form, allowing organs to enter the chest cavity preventing lung growth. CDH strikes 1 in every 2500 babies¹, of all races, religious backgrounds, and financial status - no matter how well the prenatal care.

Nearly 4 million babies are born in the United States each year.  This means that approximately 1600 babies are born with CDH each year - in the U.S. alone!    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) ² - yet, you probably have never heard of it until it affected someone that you love.   CHERUBS is working hard to raise Congenital Diaphragmatic Hernia Awareness!³

The cause of Congenital Diaphragmatic Hernia is not yet known.

50% of babies born with CDH do not survive and sometimes the remaining 50% have to overcome very difficult medical complications. Many CDH babies have minor lasting health problems such as feeding aversions, asthma, scoliosis, or short-term oxygen dependency.  A small number have major lasting health problems such as ventilator dependency, brain damage, or hearing problems.  Many patients have no long-lasting medical problems at all other than a scar from the CDH repair.  CDH can occur alone or with other birth defects, and rarely, it occurs as part of a syndrome.

Every CDH baby is different, there is no way to predict the outcome of any patient.  Some babies with no diaphragm and little lung growth have survived, while some babies with full lungs do not.  These children are very different, requiring different treatments, and varying amounts of medical support.
 

 

Click the image below to view a CDH Video narrated by Michael Harrison, MD from UCSF Fetal Treatment Center ⁴

History of Congenital Diaphragmatic Hernia


- Diaphragmatic Hernia was first described in 1575 by Pare' in reporting in 2 autopsies of adults who had acquired diaphragmatic hernias by trauma.

- In 1672, the first description of Congenital Diaphragmatic Hernia was reported by Lazarus Riverius during the autopsy of an adult male. Miraculously, this man lived 24 yrs with CDH in the 17th century.

- In 1701, Holt reported the first case of CDH in a child.

- In 1796, Morgagni discussed various types of diaphragmatic hernia, including the anterior CDH that bears his name.

- In 1827, Cooper described the symptoms, pathology and classification of CDH.

- 1834 Laennec was the first to suggest a laparotomy that could be used to withdraw intestine from the chest cavity.

- In 1847, Bowditch presented the first collected series of patients with diaphragmatic hernia in 1847 before the Boston Society for Medical Observation.

- In 1848, Bochdalek, described CDH that occurs posterolateral. This now bears his name.

- In 1888, the first recorded attempt of a laparotomy to reduce the hernia was made by Naumann.

- In 1902 the first reported successful operation of an infant born with CDH

- In 1946, Robert Gross reported the first successful repair of a CDH in a baby less than 24 hours old.

- In 1976, ECMO (Extracorporeal Membrane Oxygenation) was first used successfully in the treatment of persistent pulmonary hypertension.

- In 1976, doctors first used lambs to create a CDH, researching for the cause and best treatment of CDH.

- In 1989, Michael Harrison led the team at the UCSF in the first succesful open fetal surgery for CDH.

- In 1992, "Gentle Ventilation" of CDH first began at the University of Florida, led by David Kays

- In 1994, the first NIH sponsored clinical trial for fetal surgery was done at UCSF for the open repair of congenital diaphragmatic hernia

- In 1995, The CDH Study Group was formed with medical professionals from the around the world with a vested interest in CDH.

- In 1995, the first international organization for families and medical care providers of children born with Congenital Diaphragmatic Hernia was created. CHERUBS still leads the CDH community in providing support and works with the medical committee to provide information and research options.

- In 1996, first successful fetoscopic temporary tracheal occlusion for CDH was done at UCSF by Harrison and team.

- In 1997, CHERUBS published it's first Congenital Diaphragmatic Hernia Research Survey Results, tallying research data from families.

- In 1997, the first on-line information site for CDH was created by CHERUBS.

- In 2000, First NIH sponsored randomized controlled trial for fetal surgery was done at UCSF

- In 2000, the first international conference for families affected by CDH was held in Orlando.

- In 2007, the Association of Congenital Diaphragmatic Hernia Organizations (ACDHO) was formed.

- Also in 2007, the Official Congenital Diaphragmatic Hernia Awareness Ribbon was created by families of children born with CDH to help raise awareness and research of the birth defect.

- In 2007, the first on-line forum specificially for CDH was created

- In 2008, CHERUBS created the first web site dedicated solely to free access of information for research of CDH.

- Stonewall Jackson suffered from an unrepaired Diaphragmatic Hernia. Whether it was Congenital is not known.

- CDH occurs in 1 of every 2500 to 4000 babies, as reported in 2006 by The CDH Study Group. The survival rate is still 50%.

- The cause of Congenital Diaphragmatic Hernia is still not known but it has been associated with several genetic anomalies such as Fryns Syndrome, Cornelia deLange System, Trisomy 18, 21 and 22.

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

- 20% of CDH pregnancies also are diagnosed with polyhydramnios, an over abundance of amniotic fluid



In CHERUBS Membership:


- CDH has both occurred and not occurred in identical twins.

- We have many set of fraternal twins with one baby with CDH and the other healthy

- 3 families out of 2500 have had 3 children each with CDH. The reoccurance 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 yrs 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 of our members.

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

- Several of our members were diagnosed with CDH after 2 yrs old, with the oldest over 40 yrs old.








Per all the false claims made by 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 personly affected by CDH.


 
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 Meeeting; 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 Paediatric 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.



cherubs Yahoo Group Listserv digest #202.  1999

cherubs Yahoo Group Listserv digest #26033.  2004

cherubs Yahoo Group Listserv digest #3171.  1999

cherubs Yahoo Group Listserv digest #3590.  1999

cherubs Yahoo Group Listserv digest #7289.  2000

cherubs Yahoo Group Listserv digest #5787.  2000


⁴ Video on this page courtesy of the University of California San Francisco Fetal Treatment Center
 

DISCLAIMER:The information on all pages of this web site is for education only. It is not meant to be used in place of proper medical care and advice. CHERUBS does not encourage or discourage any medical treatments or procedures. Our purpose is to educate families and medical care providers so that they may make the best decisions for the patients' interests. You can not compare your child to other children born with CDH, they are all different. The opinions aired by members are not necessarily the views of all members, staff, or of CHERUBS.


 
 

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CHERUBS is proud to a member of The Alliance of Congenital Diaphragmatic Hernia Organizations.

CDH Organizations from around the world, working together on one goal.  Helping families affected by Congenital Diaphragmatic Hernia.

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