Doctors, Families Rally for Cure for Deadly Birth Defect

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

Monday, December 31, 2007

2008 - The Year of Congenital Diaphragmatic Hernia Awareness TM

Those who are fired with an enthusiastic idea and who allow it to take hold and dominate their thoughts find that new worlds open for them. As long as enthusiasm holds out, so will new opportunities. ~ Norman Vincent Peale

The quote above clearly has made many enthusiastic about Congenital Diaphragmatic Hernia Awareness TM Day and their enthusiasm is contagious. It is so long overdue - CDH needs to be brought to the public forefront. It affects too many families out there, too many infants are born with it, too many die from it and too many have more challenging lives because of it too.

Why - 2008 is the Year of Congenital Diaphragmatic Hernia Awareness TM - one state at a time and in the future one Nation at a time. We can't do it alone but together we can accomplish this massive goal.
Wishing All a Healthy & Happy New Year!

Tuesday, December 25, 2007

Sunday, December 23, 2007

Senator Hillary Clinton ~ Informed of Congenital Diaphragmatic Hernia AwarenessTM & Breath of Hope

This week as I posted, Terri (Ava's Mommy) was able to attend a speech which Senator Hillary Clinton made in Iowa. Terri was able to speak with Senator Clinton for a few moments and told her of Ava, Congenital Diaphragmatic Hernia, Congenital Diaphragmatic Hernia AwarenessTM Day and that Iowa had issued a Proclamation.

Please note - not political here - this is just about raising Awareness for this birth defect that affects 1 in 2,000 births here in the United States, which translates to almost 5 families every week hearing their child has this birth defect. At the moment of diagnoses - that is usually the FIRST TIME anyone hears of it - Breath of Hope is seeking to change that fact!

And Thank You Senator Clinton and all others out there that have accepted our information, issued Proclamations and are making note that we are making a difference and changing things!

Terri, thank you and your sister and your family for letting you go out and raise Awareness - they are also key in this too!

Breath of Hope, Inc. is a public non-profit organization does not endorse candidates for any office.

Friday, December 21, 2007

Congenital Diaphragmatic Hernia Awareness Day Proclaimed

The following states have issued Proclamations or are pending to issue them:
Virginia - pending
New Hampshire
Rhode Island
New York - pending
Oregon - pending
This is 19 States of 50! Over 38% and we have - since September - these states have Proclaimed March 31, 2008 as Congenital Diaphragmatic Hernia AwarenessTM Day! A few have Proclaimed the WHOLE MONTH of March as Congenital Diaphragmatic AwarenessTM Month!
Thank you all who have wrote letters and sent in the sample proclamations! THIS is the action needed to spread Awareness! This gives us a platform to tell our stories and to raise awareness!

Congenital Diaphragmatic Hernia AwarenessTM on A NATIONAL Level!

Yesterday evening one of our Directors, Terri who is in Iowa, went out to see Hillary Clinton speak. This has nothing to do with politics or political affiliations. Terri was thrilled to meet this First Lady and Candidate for President. As anyone would be, this woman has made history.

Terri was able to tell her that her beautiful daughter, Ava, is a survivor of congenital diaphragmatic hernia and that Iowa has signed a Proclamation for March 31, 2008 as Congenital Diaphragmatic Hernia AwarenessTM Day. Which Ms. Clinton, replied, "A Proclamation, that is wonderful." Terri also handed her one of Breath of Hope's AwarenessTM Day brochures.

This in itself is spreading awareness - but it can be done by anyone - everyone - from Presidential Candidate to Mayors to the person waiting in line with you doing holiday shopping - can be made aware!

Breast Cancer Awareness did not get as big as it is now - overnight - it takes small steps, one by one to get it to the level it is now!

Breath of Hope, our members, our friends and our volunteers are doing this! One step at a time.

Friday, December 14, 2007

One Heart Touching Another Heart

In our deepest moments of struggle, frustration, fear, and confusion, we are being called upon to reach in and touch our hearts. Then, we will know what to do, what to say, how to be. What is right is always in our deepest heart of hearts. It is from the deepest part of our hearts that we are capable of reaching out and touching another human being. It is, after all, one heart touching another heart. --Roberta Sage Hamilton

We have had several babies born recently ~ two precious ones became angels and others are on that roller coaster ride in the NICU. We have had two babes re-herniate and one is back home and one is continuing the fight. We have a few more expecting. I saw the quote above and thought of how fitting it was to congenital diaphragmatic hernia support for families. Those of us who have already walked the walk - our hearts are with them.

At least these families know they are not alone.

Saturday, December 8, 2007

Bee Symbol - Congenital Diaphragmatic Hernia Hope...

From time immemorial, bees have symbolized humanity's wish for increased health, strength, endurance and prosperity. Napoleon valued bees for their industry and dedication, decorating his coronation robes and official crests with bee symbols.

Based on the startling observation that a bee's body is too big for its wingspan to be able to carry, many people feel it's a miracle that a bee can fly at all. Some therefore think of bees as good luck, and as encouragement for getting through tough times. Bees are also a symbol of empowerment and hope in the face of great odds.

Bee pollen honey is reported by holistic healers as having special healing characteristics; bee venom is even being experimented with as a treatment for cancer. No matter what you might think about the nature of bees, their industriousness and productivity is astounding.

Monday, December 3, 2007

Faces of CDH - 2008 Wall Calendar

Breath of Hope's 2008 Wall Calendar is now available - Faces of CDH - Above is March 2008

Cafe Press is also having FREE shipping for orders over $50!

Sunday, December 2, 2007

Congenital Diaphragmatic Hernia Awareness - First Step, Second Step & Beyond....

The first step toward change is awareness. The second step is acceptance. ~ Nathaniel Branden

Breath of Hope is seeking to change the simple fact that many people do not know about Congenital Diaphragmatic Hernia a birth defect which will be diagnosed to 5 families in the United States alone every day. Devastating statistics even more devastating to the individuals and families that this birth defect affects.

When an unborn child is diagnosed with this condition - many Moms and Dads first hear what doctors have to tell them about congenital diaphragmatic hernia - they are made aware. The second thing they do is scour the Internet for information. Much of it should be dismissed because it is about a child who was treated and became an angel more than 5 years ago - and treatment has changed. They accept that this could take their unborn child's life. Or in some cases their new born child's life.

Breath of Hope's first step is to raise awareness to all about this gruesome birth defect. Through raising awareness - there will be more research, more families that are prepared and know of this birth defect and less will have to be explained.

We now have the following states that have Proclaimed March 31, 2008 as Congenital Diaphragmatic Hernia AwarenessTM Day:

Virginia - pending
New Hampshire
Oregon - pending

If interested in writing your State or City or Town, please contact us and we will send you a Sample Proclamation and a Letter you can tailor with your own information. By obtaining a Proclamation by each state and soon Country we will be spreading the word and making all aware of Congenital Diaphragmatic Hernia.

When diagnosed - these families may have heard of it and know that they are not alone and there is support.

Every Breath They Take Is Our Breath of Hope!

Monday, November 26, 2007

Congenital Diaphragmatic Hernia Awarness TM Day Update

Breath of Hope ~ Congenital Diaphragmatic Hernia Awareness TM

Update on the States that have so far issued Proclamations or have confirmed that they will. These are the States that have done so:

Virginia - pending
New Hampshire

We just heard from a member in Oregon and she is sending them their request of the file of the Proclamation so they don't have to re-type it! YEAH!

That will be 15 of 50 - this is a fantastic start!

If interested and your state is not listed please go to the Breath of Hope website and click on the Awareness tab! Information is there and you can contact us at and we will be happy to take your information and send you the sample letter and sample Proclamation!

Many of our members are also planning Awareness Events in their communities on March 31, 2008 - including wearing turquoise for the day - a very powerful message to send for Congenital Diaphragmatic Hernia Awareness TM....

Sunday, November 25, 2007

Generous Hearts and Wholesome Actions

It is worth reminding ourselves that what brings us the greatest joy and satisfaction in life are those actions we undertake out of concern for others. Indeed we can go further. For whereas the fundamental questions of human existence, such as why we are here, where we are going, and whether the universe had a beginning, have each elicited different responses in different philosophical traditions, it is self-evident that a generous heart and wholesome actions lead to greater peace. --Dalai Lama


The above quote from the Dalai Lama reminded me of our members at Breath of Hope

When new members join - we know that they too have been affected by the birth defect Congenital Diaphragmatic Hernia and know the devastation, the joy and the struggle having a child in their lives who struggles to survive CDH. We cheer their triumphs, we worry and our tears fall with each family. It is hard watching others go through what you have gone through too. Sometimes our members need to take a break from it all - but there are always others to step forward and give encouragement. All of us with different backgrounds, some from other countries who join together with generous hearts and wholesome actions help.

And all of us together to bring Congenital Diaphragmatic Hernia Awareness TM to the world, one step at a time.

Saturday, November 24, 2007

Congenital Diaphragmatic Hernia AwarenessTM on MySpace

If you are a MySpace user - and want to help support Breath of Hope and Congenital Diaphragmatic Hernia Awareness TM ~ please feel free to visit!

Thank you!

Wednesday, November 21, 2007

We are thankful for medical professionals who dedicate their lives to help our families. We are thankful to the Governors and States that have issued the Congenital Diaphragmatic Hernia AwarenessTM Day Proclamations. We are thankful for our supporters, members, friends, families, donors and most of all - our children.

Monday, November 19, 2007

Spreading Awareness on the Morning News!

One of our members, Despina, her dear husband and her smiling son, Mason were interviewed for this story - on how parents of NICU children are so Thankful for NICUs!

If you click on congenital diaphragmatic hernia - it links to

This has made my Thanksgiving!

Sunday, November 18, 2007

Doing for Others is Immortal

What we have done for ourselves alone dies with us; what we have done for others and the world remains and is immortal. --Albert Pike

To give of yourself and sacrifice for others so that their troubles are less - is more rewarding than shopping for a new electronic component or clothing. When we give, we gain and we in turn contribute to community and society to make it better.

Saturday, November 3, 2007

Congenital Diaphragmatic Hernia AwarenessTM ~ How to Help!

If you want to help, go to our website at

There is a tab that will take you to Awareness information. We have a sample letter and Sample Proclamations to send to Mayors and Governors. Please note that we have had the following states Proclaim March 31, 2008 Congenital Diaphragmatic Hernia Awareness DayTM:

Virginia - to be issued in January 2008
New Hampshire - to be issued in the coming weeks

We have also had the following cities:

Charlotte, North Carolina
Cincinnati, Ohio

Please don't think you can not help if your state or city is listed - this is going to be an ongoing grass roots effort! I am even starting in my area to coordinate events and activities to be done so more people are AWARE! Each person I speak with - is aware now! Raising awareness can be a slow process - but if we all ban together to do this - it WILL be done.

Tony - this is for you - I would be happy to send you the documents - please contact us at: or

Thank you!
Every Breath They Take Is Our Breath of Hope

Just Do It....And we ARE!

You are to become a creator, not a competitor; you are going to get what you want, but in such a way that when you get it every other man will have more than he has now. --Wallace Wattles

I liked this. Several ideas for Breath of Hope have been created - and that is the intent to push forward with our written materials, our published materials and spread Congenital Diaphragmatic Hernia AwarenessTM.

Sunday, October 28, 2007

Congenital Diaphragmatic Hernia Tribute

Carrie, Noah's Mommy made the following slide show - we all think it is beautiful - but grab a tissue!


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 thirty-three (133) 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.
3. If you know a family affected by CDH, tell them of Breath of Hope –we are here if they need us.
4. If you are looking for a cause to help with – we would welcome your assistance!
5. Wear turquoise on March 31, 2008 for Congenital Diaphragmatic Hernia AwarenessTM Day! When someone asks what it's for – tell them!

written entirely by Elizabeth Doyle-Propst 10/24/2007

Friday, October 26, 2007 is FULLY UP!

Our website is now fully up!

We would like to add a page with all the Proclamations we have had signed by Governors of States and Mayors and a page with more links!

I have had people outside of BoH comment, "Very professionally done." "Awesome." One of the IT guys at work told me, "You all could show me a thing or two!"

Thank you Stacy - you truly did everyone justice - and we can tell by the beauty of the website!

Tuesday, September 25, 2007

Congenital Diaphragmatic Hernia Awareness Day TM is Announced

We have informed our members that Congenital Diaphragmatic Hernia Awareness Day has been launched. So far we have heard back from Mississippi and they signed the Proclamation and returned it! Iowa has contacted the Director who mailed it in and willing to sign it for the whole MONTH! We just heard from Pennsylvania too. Virginia will be sending it out in January.

A letter and a sample Proclamation and a forty-one cent stamp and we are working on cities and towns too! We have had a total of 15 so far send in these to their state, Commonwealth or Republic.

We are spreading awareness....

Tuesday, September 18, 2007

A Tribute to One of My Heros

I want to work for a company that contributes to and is part of the community. I want something not just to invest in. I want something to believe in. --Anita Roddick,8816,1660911,00.html

It seems like a lifetime ago - before Cecilia and before I had heard of the birth defect Congenital Diaphragmatic Hernia - I studied Anita Roddick and her business. I even wrote a speech I had to give in a Business Public Speaking Course I took in College on her. (When I went back to get my degree.) I admired this woman so much for taking a stand and trying to make a difference in this world.

A few months ago, I found her blog and had lost touch with what Ms. Roddick had been doing and learned that she was fighting illness, had sold her company and was still being the activist she always had been through her life. I want to live like that and also die like that!

Of course, my mother, my grandmother and my sister and my daughters are my heros in my life but I also can include Anita Roddick in that category also.

I recall that stock of her company fell a bit and the accountants were informing her of this "great loss". Her reply to them was something like this: "All on paper, we didn't really loose any money because we didn't have it in the first place."

If more CEOs would view it that way!

Saturday, September 15, 2007

Seize this Life

Live with intention. Walk to the edge. Listen hard. Practice wellness. Play with abandon. Laugh. Choose with no regret. Appreciate your friends. Continue to learn. Do what you love. Live as if this is all there is. --Mary Ann Radmacher

Seize this life - no matter what it gives you - you can take the bad and turn it around. Someone recently said I am such an advocate for the CDH babies born - I hope so - not just those that go to heaven like my daughter - but those that grow and thrive in this world too.

Working for Breath of Hope and the members is what I love to do, my children and family are also what I love but in many ways - BoH has become a family.

Thursday, August 30, 2007

There is Beauty in Simplicity

I have learned by some experience, by many examples, and by the writings of countless others before me, also occupied in the search, that certain environments, certain modes of life, certain rules of conduct are more conducive to inner and outer harmony than others. There are, in fact, certain roads that one may follow. Simplification of life is one of them. --Ann Morrow Lindbergh

I read this quote and thought of the journey that a family and friends travel when having a child with congenital diaphragmatic hernia. I also thought of how NOT simple and how simple the treatment for CDH - surgery, repair the diaphragm. It sounds so simplistic - yet it isn't and there are so many factors that determine if the little spirit will survive and be the amazing kids that all these survivors of CDH are - or become the amazing spirit that we know they are in heaven.

One of our babes is going through surgery today at John Hopkins and another babe just went through the Tracheal Occlusion in Rhode Island with some issues arising. We hope that the simplicity of our prayers, hopes, thoughts and lung function chants meet with survival of these two little spirits.

Wednesday, August 15, 2007

This spoke to me - Personally

It is to the credit of human nature, that, except where its selfishness is brought into play, it loves more readily than it hates. Hatred, by a gradual and quiet process, will even be transformed to love, unless the change be impeded by a continually new irritation of the original feeling of hostility. --Nathaniel Hawthorne

And those out there that are the irritation - know who they are....

Saturday, August 4, 2007

501 (c) (3) IT IS OFFICIAL as of May 17, 2004

We just received the Advance Determination Letter from the Internal Revenue Service, Department of the Treasury - Breath of Hope, Incorporated is exempt from Federal income tax under section 501 (c) (3) of the Internal Revenue Code. Contributions are deductible under section 170 of the Code. We are qualified to receive tax deducible bequests, devises, transfers or gifts under section 2055, 2106 or 2522 of the Code.

Effective Date of Exemption - May 17, 2004 ;-)

Yahooooooo! All that paperwork, the late nights, the editing, the reading and research PAYED OFF!

Monday, July 30, 2007

Real Integrity

Real integrity is doing the right thing, knowing that nobody's going to know whether you did it or not. --Oprah Winfrey

I liked this. I had to share because I believe at Breath of Hope we give credit where it is due when a good idea is shared, no one takes credit for a job or producing something that benefits all members. Our Newsletter was a combined effort. Without those members submitting stories, without members donations and without the support, encouragement and inspiration of all - it couldn't happen.

As a group that will take credit for all efforts in our endeavors to bring awareness to Congenital Diaphragmatic Hernia we will succeed. There is strength in numbers.

I also believe integrity is doing what you say and saying what you do. My supervisor placed in my review document for my daytime paying job. BoH is what I do to satisfy my heart.

Sunday, July 15, 2007

Trisomy 13 - My discovery and the Truth of the Matter

Until Melissa and Bennett-Chadlen I was so uninformed on Trisomy 13. You see I like many heard from the professionals that this was a fatal condition alone and with CDH - even more so. I never knew there were people living with Trisomy 13 into their 40's or that these children were not unlike children with Downs Syndrome (Trisomy 21) and many of these children thrive. I was told they didn't live long. They can learn, they can work, they can go to school - are they not "perfect" - is anyone really? Or are they in their own way?

If you want a child - truly want a child - it does not matter their imperfections and if it does perhaps that may be an imperfection within? No judgement here - some want the perfect life but those of us that have had children with a birth defect - we know this world is imperfect.

Yet sometimes it is the imperfect things in life that are truly the way things should be and should be appreciated, loved and embraced. In doing so you learn to love yourself and then can love others too.

Melissa and Bennett-Chadlen - Thank you!

Links for Living with Trisomy 13 are under the Support Links - and her wonderful letter is also in these links. I encourage everyone out there to read these and start spreading the word to those out there!

Nimkee, I will be sure to help raise the THUNDER for this! ;-)

Saturday, July 7, 2007

Why Breath of Hope Exists

Current statistics state that congenital diaphragmatic hernia birth defect occurs in 1 in 2,000 live births in the United States and accounts for 8% of all major congenital anomalies. With the rate of live births in the United States at 4,115,590 in 2004 (See, National Center for Health Statistics), this translates to approximately 1,800 live births with the congenital diaphragmatic hernia birth defect. Cystic Fibrosis occurs in 1 in 3,000 live births in the United States, and Spina Bifida has an occurrence of 7 in 10,000 or 1 in 1,478 live births. Currently, the general public has heard of both cystic fibrosis and spina bifida, although congenital diaphragmatic hernias occur just as often, with fatal results. Currently there is no other organization giving the support needed to those affected by the congenital diaphragmatic hernia birth defect, until now. © March 2007

Monday, July 2, 2007

~ Progress ~

Finally our first Newsletter should go to press this week and the mailing should be by next.

The IRS contacted us a few weeks ago, we had two minor things to complete - update and one should be on the way to us and then to the IRS within the next week. We are on track to have 501(c) (3) approval very soon and that will open the flood gates for more work to be done. We are amazed that they needed two minor things from us!

We also started a new "Thoughts & Prayers List" for our members. Thank you Luke and Jordan - your Moms' were the inspiration.

And our website is progressing. Good things come to those who wait. "Patience is a virtue, catch it if you can, found seldom in a woman and never in a man."

Saturday, June 23, 2007

Core of Breath of Hope....

Integrity is the basing of one's actions on a consistent framework of principles. Depth of principles and adherence of each level to the next are key determining factors. One is said to have integrity to the extent that everything he does and believes is based on the same core set of values. While those values may change, it is their consistency with each other and with the person's actions that determine his integrity.

Tuesday, June 19, 2007


Recent issues a member commented that I must have the Mission Statement of Breath of Hope on my wall. I don't - just recall reading it and re-reading it among the Board Members to get it right.

Breath of Hope
Congenital Diaphragmatic Hernia (CDH)
Supporting all ~ Searching for a cure

Breath of Hope exists to combat the congenital diaphragmatic hernia birth defect. We are committed to supporting parents, children, family members and friends facing the diagnosis of a congenital diaphragmatic hernia birth defect. We carry out this mission through promoting public awareness, supporting the medical community and encouraging research efforts to one day prevent or successfully treat those diagnosed with a congenital diaphragmatic hernia.

Sunday, June 17, 2007

Why A Bumble the Logo?

Immortality, rebirth, industry, order, purity, soul, chastity,
messengers between worlds, secret wisdom

In dreams, the bee represents approaching death: one's soul is buzzing
off. They have often been viewed as brave, industrious, clean,
politically harmonious, and aesthetically gifted; these qualities
provide extensive fodder for symbolic representation. The bee
represents perfect community, and although it is weak in body, it is
strong in spirit and wisdom.

In Egyptian culture, the bee is associated with royal hierarchy
because of their monarchic organization, industry, creative activity
and wealth. In Paradise they were the 'little winged servants of God'
only changing to brown after the fall, and, with Eagles, are the only
animals that have access to heaven.

Friday, June 8, 2007

A Breath of Hope

Hope that after the dreaded news that things will turn out alright or hope that you can handle anything that will come to you if things do not go right. Why Breath of Hope was started to help others know there was hope that people cared. Those that have "been there, done that" know better what it is like than anyone else. We know the cycles of grief that occur for both Expectant Parents, Parents who have children that survive CDH and for Parents whose child decided wings were more appealing than feet.

To give a Breath of Hope, when the worst experience happens. To have a doctor tell you your unborn, newly born or still born child has Congenital Diaphragmatic Hernia and has a 50/50 chance. Even if they survive it, that they might have health issues.

To give a Breath of Hope....