CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support
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CDH
CDH Research
CHERUBS
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CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support
Congenital Diaphragmatic Hernia Statistics
In the United States:
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. That means 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.
Worldwide:
The World Census Bureau estimates that in 2008 over 350,000 babies are born in the world every day = 147 babies will be born with CDH every day.
According
to the IDB (International Database) from the U.S. Census site, 257
people are born every minute globally. That means that somewhere in the
world, every 10 minutes a baby is
born with Congenital Diaphragmatic Hernia. Every 10 minutes.
1 CDH baby every 10 minutes.
These
numbers add up to over a half million CDH babies since
January 1, 2000!
No one knows the cause of CDH.
No one knows how to prevent CDH.
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.
Hardly anyone knows what CDH is unless someone you love has been
affected by it.
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.
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
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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.
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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.
What can you do to help?
Raise awareness.
Donate to research.
Participate in events.
Help support CDH families.
References:
http://www.americanpregnancy.org/main/statistics.html
http://www.worldpopulationbalance.org/pop/metronome.php
http://www.census.gov/ipc/www/idb/
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 personly 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 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
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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
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