Doctors, Families Rally for Cure for Deadly Birth Defect

Parent's Perspective

KSDK.com News Report of Saint Louis Children's Hospital Press Conference

Saturday, December 11, 2010

National (International) Children's Memorial Day - Sunday, December 12th

Sunday, December 12th is International Children's Memorial Day.  This campaign was started by Compassionate Friends in order to honor and memorialize all children who were taken too soon from this earth.  Just light a candle at 7 PM and extinguish it at 8 PM so the light circles the world from one time zone to another. 

Breath of Hope would like to issue a challenge of sorts.  If you know someone who has a child die from anything, you may have been at a loss of what to say or do for them - light a candle.  You can further this by taking a picture of your candle and send them a message with the picture.  Tell them you thought of them and their child.  Trust us, this will mean the world to them!  Thank you!

Thursday, December 2, 2010

Breath of Hope's Holiday Auction for CDH Awareness

Help us Turn the Corner!

It's time to Bid Now! The Auction is filled with great merchandise, useful services and unique experiences.

You're sure to find something to bid on when you browse through our items.

View All 80 Items

2 Tickets to the U2 Concert of Your Choice!
Attend the U2 Concert of Your Choice! Item Includes: Two (2) premium lower level tickets to your choice of U2 concert. Two (2) U2 merchandise packages. Two (2) $50 in-stadium food and beverage credit. Tour Dates 2011 May 21
Value
$900.00
Current Bid
Bid Now!
$50 Restaurant.com Gift Certificate
Great item to have this holiday season as a last minute gift, distant giving or for yourself! Restaurant.com Gift Certificates are redeemable for restaurant gift certificates good at thousands of participating restaurants nationwide or for mercha...
Donated by:
Elizabeth Doyle-propst
Value
$50.00
Current Bid
Bid Now!
$50 Jewelry Gift Certificate to PinkCalyx.com
You are bidding on a $50 Gift Card to Pinkcalyx.com (See Terms and Conditions) PinkCalyx.com is the world?s premier online luxury jewelry retailer offering unique creations for all types of jewelry: bracelets, earrings, necklaces, pendants, and ...
Donated by:
PinkCalyx.com
Value
$50.00
Current Bid
Bid Now!
Bridal Veil Falls By Ansel Adams
Lithograph, 30" X 36"
Value
$250.00
Current Bid
Bid Now!

View All 80 Items


Want to Share the Fun?

All you have to do is Refer A Friend and they can participate too!

Wednesday, December 1, 2010

Happy Hannukka from Breath of Hope

Eight days the light continued on its own:
A miracle, they say, but not more so
Than ordinary lives of flesh and bone,
Consuming wicks burned ashen long ago....
~Nicholas Gordon

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, Restaurant.com 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

And:

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 cdhawareness@breathofhopeinc.com, 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

Sunday, October 31, 2010

2011 Faces of CDH Calendar & Breath of Hope's New Logo

The 2011 Faces of CDH Calendar is now available on Cafepress.  If you go to this link - please consider going to Goodsearch - Good Shopping - a percent of your sale will go to Breath of Hope!  The calendar comes in two sizes 17X11 for $19.99 and 11 X 8.5 for $16.99, both make excellent gifts!


Also today is the LAST DAY for FREE Shipping on all orders over $40.00 - the coupon code is NEWSHIP40


Click here to go directly to the Breath of Hope Cafepress Site - if you shop from Cafepress the prices are slightly more!

We are always honored by all the families who send in the photos of these amazing children.  It truly is their faces that make these calendars so perfect!  Thank you!




Wednesday, October 27, 2010

Each Day 5 Infants are Diagnosed with CDH

Today almost 5 families in the United States alone will receive the devastating news that their unborn child will have to fight for its life. They have been diagnosed with a potentially fatal birth defect called a congenital diaphragmatic hernia. A congenital diaphragmatic hernia is where the diaphragm in development does not completely close in an unborn baby and organs migrate to the thorax which under normal circumstances is where the heart and developing lungs are located. This defect has a profound impact on lung function.

Thirty-five (35) families a week. One hundred fifty (150) families a month. 1800 families a year. Congenital diaphragmatic hernia occurs just as often as spina bifia and cystic fibrois yet most do not hear of it until their child is diagnosed.

It doesn't just affect the baby, the mother and the father – it affects the whole family and the entire community. This baby will need Intensive Medical Care at a level three NICU with ECMO. The medical bills will total hundreds of thousands and quite often, millions of dollars. These are million dollar babies. The care to save their lives depletes blood supplies at local blood banks – one infant required 6 gallons of blood and blood product in 38 days. Some families will be financially depleted due to the long term care of these children or other costs associated with one or both parents without a job. Without benefits, Medicaid takes over and covers costs. Some families require state and government assistance for short periods of time. This has an effect on communities. Some insurance companies have "Lifetime Caps" and these children reach them very quickly. These children require insurance to provide the therapy they need so that they can accelerate and thrive.

What can you do to help save these babies? What will help these families? What can you do to make a difference?

1. Learn about congenital diaphragmatic hernias.
2. Donate blood regularly, if you can, to your local blood centers to help ensure all patients receive the blood they need.
4. If you are looking for a cause to help with – we would welcome your assistance!
5. Wear turquoise on March 31, 2010 for Congenital Diaphragmatic Hernia Awareness Day! When someone asks what it's for – tell them! Or wear it every day!  (Many of us do!)

written entirely by Elizabeth Doyle-Propst 10/27/2007
_____________________

Copyrighted - Breath of Hope Inc. - if you wish to use this - you can - just site the source!

Thursday, October 14, 2010

Wave of Light - Pregnancy and Infant Loss Awareness Day - October 15th


On October 15th it is International Pregnancy and Infant Loss Awareness Day.  On this day, please light a candle at 7 PM in your time zone and you can extinguish it at 8 PM.  This will create a continuous  wave of light around the world for the little angels to see from heaven.

For more information - click here

Tuesday, October 12, 2010

2nd Annual Cadan's Halloween Carnival - CDH Research Benefit!

If you are in the Illinois area - this is an awesome family event!  All proceeds raised will go to Saint Louis Children's Hospital to benefit research to benefit congenital diaphragmatic hernia. 

More details are on Facebook - click here

Thank you!