Doctors, Families Rally for Cure for Deadly Birth Defect

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

Tuesday, November 23, 2010

Breath of Hope - Member Organization of NORD

The Board of Directors of NORD has accepted Breath of Hope as a Member Organization.  NORD is a unique federation of organizations that share a common interest in helping people with rare diseases. These organizations have learned that they speak with a louder voice when they work together, even though their individual missions may differ in specific details.

NORD member organizations share the benefit of representation in Washington, DC, through the efforts of NORD's Vice President for Public Policy in its Washington office. They also receive frequent briefings from NORD on political and medical news, as well as guidance on topics related to accomplishing their organizational goals.

To view a list of current organization members with direct links to their websites, click here. (We just received notification via email today and are not currently listed but will be soon.)

Saturday, November 20, 2010

Breath of Hope's Holiday Auction for CDH Awareness

Starting on Friday, November 26th through December 10 Breath of Hope will be holding an online auction Fundraiser through Bidding for Good

Items up for auction include U2 Tickets to a concert of your choice, Lady Gaga Tickets to a concert of choice, Gift Certificates (wonderful item to have on hand to give as a gift or use yourself).  Also up for action will be a Super Bowl Package, March Madness Final Four Package, A Trip for 2 for the Country Music Awards next November, Hot Air Balloon Rides Package and Top Gun - Fighter Pilot Experience for One Package.  There are also many Art items, sports collectibles and more being added next week! 

Proceeds to benefit our organization during tough economic times.  We have not cut programs but it has been a very lean year.  We are also offering gift cards to top referrals - so please feel free to log in and refer your friends and family! 

Click here to preview, donate or sponsor:  Breath of Hope's Holiday Auction for CDH Awareness

We would like to thank Berry Web Designs for sponsorship!

Thank you!

Saturday, November 13, 2010

Congenital Diaphragmatic Hernia Documented for 300 Years?

Congenital Diaphragmatic Hernia has been recorded for over 300 years, but no one has ever heard of it, unless they encounter it. 

Congenital diaphragmatic hernia (CDH) was first described in 1679 by Lazarus Riverius who incidentally noted a CDH on a postmortem examination in a 24 year old.   

Citation:  The CDH study group and advances in the clinical care of the patient with congenital diaphragmatic hernia Nora M Doyle, Kevin P Lally Seminars in Perinatology - June 2004 (Vol. 28, Issue 3, Pages 174-184, DOI: 10.1053/j.semperi.2004.03.009)

In 1701, Sir Charles Holt described the classical clinical and postmortem findings of an infant with CDH in philosophical transactions of the Royal Society of London.   

Citation: Weblink here 
Author: Daniel S Schwartz, MD, FACS, Assistant Clinical Professor of Cardiothoracic Surgery, Mount Sinai School of Medicine; Chief of Thoracic Surgery, Huntington Hospital
Coauthor(s): Jason M Johnson, DO, General and Laparoscopic Surgeon, Department of General Surgery, William Beaumont Army Medical Center; Sidney R Steinberg, MD, FACS, Program Director, Department of General Surgery, Spartanburg Regional Healthcare System; Consulting Surgeon, Department of Surgery, WG Hefner Veterans Affairs Medical Center Contributor Information and Disclosures
Updated: Jun 12, 2009


In 1848, Victor Alexander Bochdalek, a professor of anatomy in Prague described both right and left posterolateral CDH. To this day, CDH commonly is referred to as a Bochdalek hernia in honor of Victor Bochdalek's contribution to this field.  Citation:  Weblink here

Not to dispute the findings and severe health crisis which HIV and AIDS has presented in this world, but in the last 20 years, the advances of care and maintaining health for those affected by HIV has evolved not to be a death sentence.  First reported in the 1980s in the United States Citation Here:  WebLink here

Congenital Diaphragmatic Hernia (CDH) has been reported, studied, evaluated, researched for the last 300 years and still to about 50% of those diagnosed overall it is a death sentence? A death sentence before their 1st birthday.

Everyone is aware of HIV, even those who have never directly encountered it.  Not everyone is aware of CDH, only those who have directly encountered it.  This needs to change. 

The only way this can change is if we make our Government officials and the general public aware that CDH has been reported, diagnosed and treated for 300 years but no one is aware.  If you would like to make your local, state or federal Representatives aware, educate the general public, take a hour of your time and write them.  Request a sample letter and proclamation/resolution by contacting us at, we will gladly send you the documents to do this.

Only when they are aware, when the general public becomes more aware will there be more research in order to bring the survival rates higher.  When more are aware they will fund medical research for this birth defect.  More will realize that survivors of CDH need specialized care and therapies early in order for these children to maintain health.  Until we start with the first step, no one will listen.  The first step is our elected officials and the general public.

It just is not acceptable for 300 years, CDH has been documented and the survival rates are still over all at 50%.

"Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has." - Margaret Mead