Doctors, Families Rally for Cure for Deadly Birth Defect

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

Saturday, January 25, 2014

We Need More CDH Organizations

Did you know that according to Guidestar there are only three nonprofit organizations for congenital diaphragmatic hernia?  Guidestar may not have new charitable organizations listed or those who have not submitted their information.  How many organizations are there for spina bifida?  One hundred and fifty-four listed in Guidestar and two hundred and ten for cystic fibrosis.  Ask yourself this question, why are more in your communities not aware of CDH? 

What truly is the problem?  

We need more community organizations who work within their areas and with their hospitals to help families and further research from all over.  Local organizations can give back within their own communities and are more aware of what families will need when faced having a CDH baby.  They can outreach to other community organizations for help and resources and work with the hospitals and physicians in their areas.  

Breath of Hope will continue to provide the services we do and the programs we have but we will also be working to help others start up their organizations if they have the desire, enthusiasm and commitment to do so.  Please feel free to contact us at and we will be happy to help you!  

Enthusiasm is one of the most powerful engines of success. When you do a thing, do it with all your might. Put your whole soul into it. Stamp it with your own personality. Be active, be energetic, be enthusiastic and faithful, and you will accomplish your object. Nothing great was ever achieved without enthusiasm. ― Ralph Waldo Emerson

Thursday, January 9, 2014

CDH Genetic Research and What Will be the Results?

Recently we became aware of another CDH Genetic Study which has made headlines and we appreciate all the research so many out there are doing and we even encourage families to participate.  This is not in any way to be interpreted that we are discouraging the research at all.  We are looking into the future and what will this information mean?  These are important questions to ask and to realize answers sometimes lead to even more questions. 

There have been several genes and micro deletion of genes and syndromes which appear to be prevalent with those affected by CDH with no real consistency.  Why we have always believed as many doctors do out there that CDH is is considered a multifactorial condition, simply meaning they don’t know what causes it but they believe it is caused by many factors together.  It could be that an exposure did something to cause a gene to have a micro deletion or not be as it should.  With added genes, we know this could occur during conception itself. 

We now know women who who are trying to conceive or are pregnant to prevent Neural tube defects should take the B-vitamin folic acid.  Prenatal vitamins contain B-vitamin folic acid. Many thanks to the March of Dimes for the research provided. We also know, not always does this prevent Neural tube defects from occurring.  We also now have testing which may predict many birth defects and we know through Amniocentesis is used to diagnose chromosomal and other fetal problems.  However, it does not prevent these birth defects.  It predicts them, diagnoses them, but in no way does it treat them.  

If through all the studies of genetics and congenital diaphragmatic hernia, there is discovery of genes, genomes or micro deletion of genes, what then?  Again, we are predicting and diagnosing but not preventing them.  And if you prevent them, this means you would not have that child affected by CDH.  What of the individuals who may be marked as carriers, would they be cautioned to never have children?  We have families who have been diagnosed as carriers and who do take the chance (and have had beautiful and healthy children).

If in the future, they could manipulate the genes, could that possibly cause other issues?  These studies are all in process and we truly do appreciate the research and time and funding going into them.  As we look beyond when there are answers to the how and whys the deeper questions will be how are they treated?  As stated at the top of this blog post, answers are being found or appear to be on the horizon but once we have these, there are more questions.  

Sunday, January 5, 2014

7th Annual Congenital Diaphragmatic Hernia Awareness Day 2014

Since 2007, Breath of Hope launched the first campaign for congenital diaphragmatic hernia awareness.  We were taking a risk, we had no idea how it would do or how it would be received by our supporters or the general public.  That first year we had 34 states and hundreds of localities issue Proclamations/Resolutions to those who requested them.  All we asked for is a picture or scan of the document.  The document is the for those who make the request to keep. 

Many used their Proclamations to have events, contact their local media and write their local papers to educate their communities on congenital diaphragmatic hernia.  It is a platform given to tell your story.  Each year we continue to have friends and family write their Governors to request March 31st be proclaimed Congenital Diaphragmatic Hernia Awareness Day™.  

In 2010, The United States Senate passed a resolution for March 31st to be Congenital Diaphragmatic Hernia Awareness Day, with many thanks from our supporters and a few special supporters who had connections.  

March 31st is not a day we chose lightly.  It was a day which at that time, we knew of no other CDH child to have been born or chose wings.  It was a day at that time we chose to make special.  The turquoise ribbons was chosen for the symbolic reasons, it is a neutral color and anyone can find turquoise or teal in their wardrobe to wear.  

If you would like the documents to request your State, city or community proclaim March 31, 2014 as Congenital Diaphragmatic Hernia Awareness Day, please email us at - we will provide the documents and answer any questions you have!  

If your Governor and Mayor are not newly elected, you can send your requests in now.  If your Governor or Mayor was elected in the last election, please wait until their inauguration before sending the requests addressed to them.  You may also be able to make this request on-line or through email.