Doctors, Families Rally for Cure for Deadly Birth Defect

Parent's Perspective

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

Thursday, December 23, 2010

The Reality of Congenital Diaphragmatic Hernia

Wednesday, December 15, 2010

Congenital Diaphragmatic Hernia Awareness Candles


We are taking pre-orders which will be available after the holidays but in time for Awareness Day - March 31st, 2011.  We are still working on the pricing - we hope to keep under $10 each and this will not include shipping.  If interested, please email us at elizabeth@breathofhopeinc.com - when available and we know more - we will contact you with all details.


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!

Friday, October 1, 2010

Faces of CDH Calendar for 2011

We are taking photos for the Faces of CDH Awareness Calendar for 2011, this is the fourth year we have produced this calendar. Please send pictures to pictures@cdhawareness.org by October 15, we will provide a consent form. 

Below are samples from our calendar this year.  These make great gifts for under $20 and are wonderful to give friends, family and doctors or your favorite nurse.







Saturday, September 25, 2010

Thomas Jefferson Area United Way Day of Caring - Giving that Gives Back

Since 2007, Breath of Hope has participated in the Thomas Jefferson Area United Way's Laurence Richardson's Day of Caring.  Each year, in September, the Central Virginia's United Way coordinates hundreds of projects for other nonprofits and schools in the area and provides thousands of volunteers to help.  It is the time of year, other nonprofits and schools look forward to receiving volunteers to complete projects they otherwise could not have done without the human power required.

In the summer or 2007, I heard a radio advertisement requesting nonprofit organizations contact our United Way to obtain the volunteers needed for projects for one day.  We knew there was a project that we could untilize volunteers but we also wanted a project which would give back to the community.  Breath of Hope had been supplied infant hand print kits for our Expectant/New Parent Packages by individual Board Members and myself.  We had found a wholesaler which we could purchase these kits for approximately $5 each.  We knew we could assemble them using containers and paris of plaster for less than $5 each.  In fact, the total cost per kit with labels, ziplock bags and instructions are at a cost of about $1.25 each, far less than the cost we were paying.

We also had all our printed materials reviewed and edited by the University of Virginia's NICU staff lead by Robert Sinkin, MD and felt we should give back to them.  On average, 450 infants are admitted each and every year at the NICU there.  Today, a hand print kit is supplied to each and every family who has their baby admitted there.  The remaining are used in Breath of Hope's packages and we have had extra to help send to Project Sweet Peas Projects around the country.

This year we had an amazing group of volunteers from CFA Institute and Banana Republic of Barracks Road come and learn about congenital diaphragmatic hernia, Breath of Hope and help us assemble another 500 hand print kits.  And they see the results which we provide the UVA NICU.  We know that families throughout the area benefit from these simple kits.  We also know the staff at UVA's NICU enjoy giving this small token to families in order to capture their child's first days here on earth.

We thank the volunteers, the Thomas Jefferson Area's United Way (Shaele Wood should receive a metal for her coordination each and every year), PRA International for providing the space to complete this project and the UVA NICU for the inspiration, help and assistance to complete this project for three years.

Next year will be the 20th year of the United Way Day of Caring here in this area.  Twenty years of helping other nonprofits and organizations have volunteers provided so they can help others.  By giving, you give and get and it is returned,




We would also like to promote a wonderful Printer we used this year - their service and quality are amazing!  With very short notice we were able to get our labels and they went over and above the call of duty!  Lepin' Lizard Labels - order your labels from them - they are less than any others we have used and their service is amazing!

Monday, September 13, 2010

Two Days Left - Bidding Ends September 15th at 11 PM ET

Breath of Hope, Inc

ONLY 2 Days Left to Bid!!!

The Breath of Hope, Inc Auction closes on September 15, 2010 at 11:00 PM EDT.

If you've got your heart set on a special item... you still have time to win!

Check Out These Great Buys...
You can still bid on any of the special items in our auction right up to the final seconds of this exciting event. Every tick of the clock brings us closer to the finish line. This may be your last chance to win that special item or to grab a great bargain. So don't miss out... BID NOW!

Spread the Word!
Remind your friends the end is almost here! Just Refer your Friends so they have the chance to offer their support and get some great last-minute deals.
Don't Forget: Every bid supports the work we do at Breath of Hope, Inc!

Items still available!

View All 73 Items

Katherine in Dusk
The Katharine Book Bag is about simplicity. Whether you are carrying a romance novel or a school book, this bag will let you do it in style. Its reversible sleek design allows you to get two looks for the price of one. The zippered pocket allows ...
Donated by:
Jennifer Zaranis
Value
$36.00
Current Bid
$12.00
Brew Central 14-Cup Coffeemaker
¿ 14-cup coffeemaker ¿ Fully automatic with 24-hour programmability for "wake-up" coffee ¿ Brew-pause; coffee-ready indicator; auto shut-off; simple push-button controls ¿ Gold Tone filter, charcoal water filter, and instruction book included ¿ Me...
Value
$185.00
Current Bid
Bid Now!
Viva Las Vegas!, Las Vegas
A Trip for Two to Las Vegas, Nevada for Four Days & Three Nights at the Luxor with Economy Class Air, Including Shared Round Trip Airport Transfers and an Evening Helicopter Ride over the Strip Come revel is the glamour and glitz of Las Vegas! Fr...
Value
$2,600.00
Current Bid
Bid Now!
Donate a Mile in the NYC Marathon 2010
Each runner is required to raise $2,500 in order to participate, this means that each mile they run will be worth $100. Donate for one mile - all proceeds raised will go to the Dhreams Research Program at Columbia University to further genetic re...
Donated by:
Breath of Hope
Value
$100.00
Current Bid
View Item

View All 73 Items


Breath of Hope, Inc

PO Box 6627 Charlottesville, VA 22901
Ph: 888-264-2340
http://www.breathofhopeinc.com/

Friday, August 27, 2010

Show Us Your Support!

Beginning on September 1, 2010, Breath of Hope, Inc will be holding an online auction to raise much needed funds.

We need your support!

We're asking you to participate in one of the following ways...


How You Can Help:

Donate.
We need Auction items to add to our auction. If you have valuable merchandise, rare collectibles, business or personal services or access to unique events, we need your contribution today. Click here to Donate.


Be a Sponsor.
Contact us at breathofhopeinc@biddingforgood.org or 888-264-2340 to take advantage of promotional opportunities for your business or to pledge your individual support.

Tell Your Friends.
Do you know someone who would be interested in supporting our cause? Please share the news of the online auction with your friends so they can be part of the excitement. Refer a Friend to our auction so they can get involved.

Thank you in advance for your continued support! We look forward to your item donation and online bids!

Friday, August 20, 2010

PRESS RELEASE: 2010 Breath of Hope Scholaships Awards Announced

For More Information Contact:
Breath of Hope, Inc. 1-888-264-2340
Website: www.breathofhopeinc.com

BREATH OF HOPE, INCORPORATED SCHOLARSHIP AWARDS
ANNOUNCEMENT

Breath of Hope, Inc. (BoH) a 501 c 3 nonprofit public charity is pleased to announce the following
scholarship awards to the following individuals:

  • Devin Dye of LeRoy, West Virginia is the recipient of the Miracle Scholarship which will be applied to his education at West Virginia University
  • Lauren M. Real of San Carlos, California is the recipient of the Miracle Scholarship which will be applied to her education at California State University
  • Erin McInnis of Madison, Mississippi is the of the Hope Scholarship which will be applied to her education at Harding University
  • Jacob Boyd Womack of Madison, Mississippi is the recipient of Beyond Measure Scholarship which will be applied to his education at Mississippi University
  • Alex Mourtsen of Flagstaff, Arizona is the recipient of the Miracle Scholarship which will be sent to further his education at Northern Arizona University
Breath of Hope would also like to thank GMAC Financial who through their grant made these scholarship awards possible for these amazing individuals.

To learn more about Breath of Hope, please visit: www.breathofhopeinc.com call them toll-free at 1-888-264-2340.

Thursday, August 12, 2010

August 19 - A Day of Hope...

Many people don't want to talk about an infant that died.  It is sad thing, but for the parents, grandparents and their sisters and brothers they do remember the joy, the hope and the beauty of that child who was theirs.  These are miracles too and no one should be ashamed or embarrassed to talk of these amazing miracles who blessed this world for a short time. 

On August 19 - it is a day of Hope and a day to remember and speak of these amazing angels.


Please feel free to visit here and be proud to display these beautiful photos in honor of these children and their families.

Wednesday, July 21, 2010

Make Congenital Diaphragmatic Hernia Awareness Day 2011 in Your Area!

Every day you live you project congenital diaphragmatic hernia awareness.  Sometimes you do this silently and sometimes very vocally.   You always are aware and you wish all others would be too.

A parent of a child who is surviving this birth defect, your child does something you never thought they would do when they were in the NICU and it brings you to tears.  “I never thought my child would ever color like others”.   You savor every moment and you fear every turn that maybe you will wake from this dream and it will become a nightmare again.

As a parent of an angel who fought valiantly and chose wings, you see signs in the butterflies that land on your nose or the rainbow that suddenly fills the sky when you are at your bluest blue.  Still these babies can make our heart soar.  You savored each moment and treasure your memories.

Both know the real normal is just a setting on the washing machine.  Both were shocked at the news that their infant had this birth defect that when laid out seemed bigger than they would ever be but they both fought like warriors we read of in novels.  That alone makes us pick up and move forward, telling our stories to make others aware.

You tell others to educate them that congenital diaphragmatic hernia happens just as often as spina bifida, cystic fibrosis and congenital muscular dystrophy.  Others have heard of those and know of them but few have still heard of CDH.  Many dismiss it as a “hernia” and ignore the simple fact that still today over all the survival rates are 50%.  You know that 1800 families each year have their child diagnosed just as you did.  You know the fear, helplessness and hope these families go through each and every moment.  You know what they will face.

This is why each year we ask our states and localities to issue a Proclamation for March 31st to be Congenital Diaphragmatic Hernia Awareness Day.  It is a day to celebrate.  It is another day to add to our own children’s birthday or birthday and angel day.  It is a day to have our government officials to acknowledge that this birth defect still needs more education, awareness and more research to improve the survival rates, to lessen the residuals survivors and their families endure.  We need more families to burst into tears when their child jumps for the first time because they once thought they never would.

Each year, more and more people are becoming aware – and it is because of the families who take an hour of their time to sit down, edit a letter and mail it with a sample proclamation and perhaps pictures of their own child.  You then will receive this astounding document an acknowledgment that government works for the people, by the people and for you.  You hold this tangible piece that states you made others aware that may never have been otherwise.  

Please contact us at cdhawareness@breathofhopeinc.com for a sample letter and proclamation, we will be happy to send them to you and ask all you do, is send us a photo or a scan of the document when you receive it!  When at times you have felt powerless in this journey with congenital diaphragmatic hernia, you have the power to do this!

Wednesday, July 7, 2010

Requesting Funds for Congenital Diaphragmatic Hernia Research & It Will Raise Awareness Too!


One of the most amazing people we know, Shannon, has taken on running in the New York City Marathon on November 7, 2010.  Twenty-six miles representing congenital diaphragmatic hernia awareness through the City of New York.  This marathon is the marathon that all want to run.  They say crossing that finish line in Central Park is like no other accomplishment they ever experienced. 

The New York City Marathon also attracts runners from all over the world, media from all over the world and spectators!  Every cent raised by the runners on TEAM GCDH NYC Marathon will go to Dhreams - Diaphragmatic Hernia Research & Exploration.  The runners are doing this for these children, families and to prove something to themselves - that they can reach from within and accomplish this without quiting - after all, these children are not given that choice.

Your donations are tax-deductible and every cent raised helps!   You can donate at the link above for TEAM GCDH NYC Marathon to any runner or any of the organizations and indicate that the funds are to the NYC Marathon for CDH Research!

Shannon - thank you - and all the other runners too!  Global CDH - thank you for this opportunity and may we all help raise some awareness and some funds for congenital diaphragmatic hernia medical research!

Tuesday, July 6, 2010

Friday, June 25, 2010

Quote about Pediatric Medicine...

"These are tiny humans. These are children. They believe in magic, they play pretend, there is fairy dust in their IV bags and they cross their fingers and they make wishes and that makes them more resilient than adults. They recover faster, survive worse. they believe. In Peds, we have miracles and magic and in Peds, anything is possible." ~ Grey's Anatomy

Tuesday, June 22, 2010

The "Doers" of Congenital Diaphragmatic Hernia Awareness

It is not the critic who counts: not the man who points out how the strong man stumbles or where the doer of deeds could have done better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood who strives valiantly, who errs and comes up sort again and again, because there is no effort without error or shortcoming, but who knows the great enthusiasms, the great devotions, who spends himself for a worthy cause; who at the best, knows in the end the triumph of high achievement, and who, at the worst, if he fails, at least he fails while daring greatly, so that his place shall never be with those colds and timid souls who knew neither victory nor defeat. - Teddy Roosevelt

This quote reminded me of not only the work we do to help families, we give them hope and follow their stories each different.  As parents we don't always have the answers, we are lost, we stumble and then we also learn.  As an organization we have learned along the way and we keep moving forward.  We have had some great victories with Congenital Diaphragmatic Hernia Awareness Day and educated many and many more are out there to educate.  It doesn't end with Resolution 204, it will continue until we can have not only the Senate issue a resolution but the House too - and the President sign it - to make March 31 a day we all celebrate that we raise awareness each and every day.

The quote above also reminds me of the health professionals and researchers who are on the front lines trying to overcome this birth defect.  Searching for better treatments, sometimes they are frustrated along the way.  Half of their patients die after fight valiant fights.  If they fail - they fail while daring greatly.  In their failure is also victory.  Each and every CDH case gets us one step forward.

Saturday, June 19, 2010

Wishes all Fathers a Happy Father's Day!

When I was a boy of fourteen, my father was so ignorant I could hardly stand to have the old man around.  But when I got to be twenty-one, I was astonished at how much he had learned in seven years.  ~Mark Twain, "Old Times on the Mississippi" Atlantic Monthly, 1874

Dad, you're someone to look up to no matter how tall I've grown.  ~Author Unknown

My father used to play with my brother and me in the yard.  Mother would come out and say, "You're tearing up the grass."  "We're not raising grass," Dad would reply.  "We're raising boys."  ~Harmon Killebrew

He didn't tell me how to live; he lived, and let me watch him do it.  ~Clarence Budington Kelland

Wednesday, June 16, 2010

Breath of Hope is listed as a "Circle of Care" Donor

From Saint Louis Children's Hospital 2009 Annual Report.  Please view the middle row - Breath of Hope is listed as a "Circle of Care" Donor. 

Breath of Hope is an organization that supports Medical Research which will assist in furthering the care of Congenital Diaphragmatic Hernia.  We are not medical researchers, we are parents who run a very efficient nonprofit organization.  Less than 18% of all revenue is used for Administrative costs.  We continue to help support Medical Research and put funds to work to do this. 

Wednesday, June 2, 2010

Breath of Hope Named to a List of Top-Rated Nonprofit Organizations

June 2, 2010

Breath of Hope has been named to a new list of top-rated nonprofits by GreatNonprofits, the leading provider of user reviews for nonprofit organizations.

The top-rated Women'e Empowerment nonprofits list is composed of organizations that have received at least ten positive reviews from stakeholders, such as volunteers, donors, or clients. Breath of Hope has received seventeen of reviews to date.

The reviews were posted as part of the Women's Empowerment campaign conducted by GreatNonprofits, in partnership with Guidestar and a coalition of nonprofit organizations. “We are gratified to be able to honor Breath of Hope for its work on congenital diaphragmatic hernia issues,” said Perla Ni, CEO of GreatNonprofits. “They deserve to be recognized for the support they have from their community of stakeholders.”

The entire list of top-rated Women's nonprofits is available at http://greatnonprofits.org/reviews/issues/women/_.  This list can be used to find great nonprofits to support with your giving, volunteering, and patronage.

About the Campaign

The campaign was hosted by GreatNonprofits, Guidestar, and a coalition of other nonprofit organizations.
The success of the campaign and the diversity of organizations reviewed reflect the core of GreatNonprofits’ mission to bring visibility, transparency, and accountability to the sector and allow nonprofits to engage with their community in a different way.

All reviews appear on GreatNonprofits.org as well as GuideStar.org, the premiere source for donor research on nonprofits. Nonprofits with 10 or more positive reviews during the campaign are included on the GreatNonprofits Top-Rated Women's Nonprofits list.

Media Contact:
Elizabeth Doyle-Propst
elizabeth@breathofhopeinc.com
 888-264-2340

Monday, May 31, 2010

Memorial Day 2010

For love of country they accepted death...  ~James A. Garfield

Death leaves a heartache no one can heal, love leaves a memory no one can steal.  ~From a headstone in Ireland

The brave die never, though they sleep in dust:
Their courage nerves a thousand living men.
~Minot J. Savage

And I'm proud to be an American,
where at least I know I'm free.
And I won't forget the men who died,
who gave that right to me.
~Lee Greenwood

Please remember this Memorial Day weekend, with the BBQs, Pool Openings and celebrations - is also a time to remember all those who gave their lives for the freedom we enjoy every day.  Freedom comes with a price and many sacrificed their lives.  Many families endure separation and many of them need to be honored and respected for their service.

Monday, May 24, 2010

Zumba Fitness For Congenital Diaphragmatic Hernia Awareness!

Gigi Hill - Fundraiser for Entire Month of June


One of our fantastic Moms is doing a fundraiser for Breath of Hope for the entire month of June.  Fifty percent of all sales will go to Breath of Hope.  Great gifts for women - bridal showers, birthdays or just because - or maybe a new spring bag for yourself!  Please go here to purchase!  If you would like to host a party please feel free to contact Jennifer at jenniferzaranis@gmail.com

Wednesday, May 19, 2010

Jaxson's Jog - Fundraiser in Pennsylvania for CDH

Jaxson's Jog is a 10K & 5K Run plus a 2.5 Mile Walk in Support of Children with Congenital Diaphragmatic Hernia (CDH).  Your registration makes a difference!  All proceeds benefit Global CDH.

Summary of Race Details:
  • REGISTER online today, click here (note: registration says 1 mile walk, but it is 2 miles)
  • Race date: Saturday, May 22, 2010
  • Race location:  North Park Boat House, Allison Park, PA 15101
  • Race day registration from 7:30 am - 9:30 am
  • 10K and 5K Race begins at 10 am; walkers follow
  • Registration Fee: $20 for adult runners/walkers, $10 for youth (18 or younger)
  • Course Info: For 5K course, click here; for 10K course click here
  • Hotel: Holiday Inn Pitt North is offering a special rate of $79 - click here for details
  • Stick around for the post-race festivities - awards and Chinese raffle
Follow Jaxson's Jog on Facebook:  facebook.com/jaxsonsjog
To make an online donation to Global CDH in the name of Jaxson's Jog, click here.
There are lots of ways to help – sponsor or make an individual donation, register as an individual or a team to run/walk, or make an in-kind donation of food or gift for the Chinese raffle.   I hope you will strongly consider supporting the families and children with Congenital Diaphragmatic Hernia by participating in Jaxson’s Jog!

Happy Birthday Jaxson!  We hope your day is wonderful!

Monday, May 17, 2010

2010 Congenital Diaphragmatic Hernia Summit



Will be in Philadelphia, Pennsylvania from June 23 - June 27.  For more details please go to this link with the most complete and up-to-date information - LINK

We want to thank Peace Frogs Travel / Outfitters, Chief Frog, Julie Arbelaez for her tremendous help with the hotel rooms, conference rooms and breakfast(s).  If you have travel needs, please consider them - here is the link. http://www.peacefrogstravel.com/

Sunday, May 9, 2010

Happy Mother's Day

 

To all mothers - mother's of these amazing children - both the angels and the earthly angels, grandmothers and great-grandmothers out there too!

Being a full-time mother is one of the highest salaried jobs... since the payment is pure love. ~Mildred B. Vermont

Mothers hold their children's hands for a short while, but their hearts forever. ~Author Unknown

Mother love is the fuel that enables a normal human being to do the impossible. ~Marion C. Garretty, quoted in A Little Spoonful of Chicken Soup for the Mother's Soul

A mother's love is patient and forgiving when all others are forsaking, it never fails or falters, even though the heart is breaking ~ Helen Rice

A mother is someone who dreams great dreams for you, but then she lets you chase the dreams you have for yourself and loves you just the same. ~ Unknown

The moment a child is born, the mother is also born. She never existed before. The woman existed, but the mother, never. A mother is something absolutely new. ~ Rajneesh

Friday, May 7, 2010

Congenital Diaphragmatic Hernia Summit - Philadelphia, PA

(Organizations in Alphabetical Order – more are welcome!)
Breath of Hope, The Children’s Hospital of Philadelphia, Global CDH,
Parker Reese Foundation, Project Sweet Pea

June 23 -24 2010 – Sheraton Hotel, Philadelphia, PA



To reserve your hotel room at a special rate of $129.00/night ($100 discount)
(Copy and paste the following link into a web browser)
http://www.starwoodmeeting.com/StarGroupsWeb/res?id=1004139524&key=C2

You can also call the Sheraton at 1-888-627-7071, please mention the Breath of Hope Block (50 rooms)

The Center for Fetal Diagnosis and Treatment at The Children's Hospital of Philadelphia coordinating Speakers for June 24 and/or 25


Dhreams Research Presentation – Julia Wynn


Presentation by Willie Skaggs, Councilor – How to best deal with friends and Family – who just don’t understand - open session for families to get ideas and strategies


June 23 – would be introductions … The Organizations all represented will have time to do presentations.


June 24 – (currently open)


June 25 – 10 AM – Dhreams – Presentation and description of Genetics and their study. There also will be forms there and possibly a certified phlebotomist to take blood samples for those who would like to participate.


June 26 – Visit to the Philly Zoo - the oldest Zoo in the United States – we are working on a group/discounted rate we will need a RSVP in order to reserve this at discounted rates and a possibility of having access to more attractions – such as a Swan Boat Ride or Pony Rides! boh@breathofhopeinc.com to let us know if you want to attend!


June 27 – 
The Children's Hospital of Philadelphia's Center for Fetal Diagnosis and Treatment's Fetal Family Reunion - or those traveling and who want to take advantage of the room rates through the Breath of Hope Block – please feel free! We will provide water and drinks through the conference sessions and are hoping to provide breakfast and possibly a dinner or lunch.

Thursday, May 6, 2010

Saturday, May 1, 2010

Alex had a Lemonade Stand - Breath of Hope wants a Birthday Bash

Spread a little awareness every day and why not have a bake sale?  Or even a cookout and collect donations?  If you work - bring goodies in and accept donations in exchange.  Breath of Hope's Birthday is May 17th - all fundraisers are appreciated and to further this incentive a gift certificate will be awarded to the person who raises the most funding by July 31, 2010.  The proceeds collected - 50% will go to the programs and services Breath of Hope provides and 50% will go towards medical research.  If you have questions, need ideas - please feel free to contact us at cdhawareness@breathofhopeinc.com

Wednesday, April 28, 2010

WHAT IS IT LIKE TO HAVE A BABY WITH CONGENITAL DIAPHRAGMATIC HERNIA?


Imagine that you and your partner are expecting a baby.  The thrill of the whole thought – another little being.  The whole thing is a bit overwhelming and exciting.  About the time many are diagnosed, is the 20 week ultrasound.  Most couples go to the doctor excited to perhaps find out the sex of the baby and/or just to get a glimpse of this little one before they are born.  Whose mouth and nose does this little one have?  No one expects to be told their child has something wrong. 
You are in a darkened room in order to see the ultrasound monitor and the tech is actually measuring the size of the head, bones and checking to see the organs.  Then they see that something isn’t right.  It is hard to not disclose this to the couple who is excited to see their baby, the hands the feet the nose.  In that darkened room or perhaps after you are led to an office after the ultrasound, a health professional will then inform you that your unborn child has a birth defect called congenital diaphragmatic hernia.  The survival rates are approximately 50 to 60% and they must tell you that the treatments they endure to save their lives may cause lifetime issues.  They also have to tell you that congenital diaphragmatic hernia itself because the child’s organs did not form correctly in development may have lifetime issues.
You are then told there are options.  Fetal surgery may be an option but depending upon where you live and the availability of surgeons who specialize in this, it could not be a financially feasible one.  It also depends upon the mother’s overall health and the severity of the diaphragmatic hernia, so you must qualify to have this option available to you too.  Your insurance coverage may not cover such a procedure.  It is highly experimental even today.  One day it may not be.  You are also told that you should have this infant, if you continue this pregnancy at a level 3 or higher NICU at a Medical Center that has had experience, even with the fetal surgery you would need this too.  They may require ECMO, a heart lung bypass in order to save their lives.  To imagine your unborn child hooked up to a heart lung bypass?  It is overwhelming.  This isn’t supposed to happen.
You will also be given an option to terminate the pregnancy.  You just passed the 12 week point where many couples start to breathe easier because you are past the crucial point of miscarriage in the first trimester.  You are not supposed to be making life and death decisions for your child.  You are supposed to be planning the nursery, picking out clothing and the only worry will be if you truly think you are up to being a mother or a father.  Those worries are enough in themselves. 
Now you are given options if you were prediagnosed prior to birth.  You must make these decisions that will not only affect your lives, but your whole family.  You will wonder if your choice of hospitals is good and question if you should go to another.  None of the choices are easy.  You will also be asked to undergo an amniocentesis to rule out any other abnormality with this unborn child.  Many times there are none.  Sometimes there are other issues. 
Only other parents who have faced this understand the unexplainable feelings, the emotions that go from fear, to devastation to determination.  Only other parents who have been there and done that can relate to this.  Many of us were asked, “How can you?”  We just do.  We have truly little choice in the matter. 
If you choose to interrupt this pregnancy, all the experts have told you based upon countless tests that your unborn child’s chances are less than 50%, you must endure the stigma.  You wanted this baby and you chose not to have them suffer.  It is not a selfish act but a selfless one.  Some will state if you didn’t go full-term this child doesn’t count – so not true.  You will also change because of this experience. Your child will never know the pain and will always be in your hearts. 
If you choose continue the pregnancy and hope and pray for the best you will also have doubts and wonder if you can endure seeing your small infant go through surgery, recover and endure.  If you are the mother, you will have this constant reminder moving and kicking within you.  If you are the father, each time you see your partner, you will have this reminder.  The thoughts of what you both will have to endure for your child and what your child will endure will not be far from either of you.
Then there are those couples who were expecting a healthy baby and their child is born and goes into repertory distress.  They whisk the baby away and start intubation and assessing the condition of the infant.  You may not hear anything for hours.  Not knowing what is happening to your child, to this baby you have a nursery prepared for, a life planned out for and now they are taken from you.  The doctors will then come to you and tell you of this birth defect which has a 50% mortality rate.  Your child may be treated in the hospital you delivered or many times may have to be transported to another for treatment.  You are in shock.  What in the heck is a congenital diaphragmatic hernia?  How did that happen?  Why didn’t they see it before?  When can I see my child?  When can I hold them?  Those that had the diagnoses prior to birth at least know of the protocols and procedures that health care institutions do to attempt to save the lives of these babies.
Both will sit by the bedside and pray, hope and wonder what is next?  You face the unknown, the lack of control, the overwhelming feeling of parents just to pick their child up who is suffering and ill cannot be acted upon.  This isn’t supposed to happen this way!  Why your child?  No one can give answers to that question.  You go from watching the monitors to not watching the monitors to asking if they have had a good day or a good blood gas for the past hour.  Sometimes you cling to just a good minute.
If you are blessed enough to have your child endure surgery, possibly ECMO and recover from both then the next hurdles are feedings and weaning the painkilling drugs they have been on since birth.  This is a slow process.  It takes time and patience.  Many of these children due to the organs affected may have gastrointestinal reflux and due to the tubes down their throats oral aversions.  You wonder how you are going to take care of this once fragile infant at home.  You are warned of their lung condition being fragile, that they may not have the immunities other children have and must be guarded against a society full of germs.  Your best friend will be anti-bacterial soap and hand sanitizers.  (Next to an abundant supply of burp cloths for the reflux.)
And if you are faced with letting them go, allowing them to earn their wings, either by their choice or after being told that everything that could be done has been and there is nothing left to do.  That is the worst loss, but each and every parent who has had ever to let their child go in this way will tell you, “We just knew it was time”.  The most unselfish act in the world is to tell your loved one, “It is okay to go.”  They will be out of pain, not have to endure any more but that is when your pain will immeasurably increase. 
It takes courage, faith, strength you never thought you could have to endure having a child with CDH.  You will be the most devastated you ever have been, you will be more exhausted both physically and emotionally than you ever have been before.  You will also know that no matter what life throws at you now, it is small compared to what you have endured.

© Breath of Hope, Inc 2010