Doctors, Families Rally for Cure for Deadly Birth Defect

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

Tuesday, March 30, 2010

What to Do for Congenital Diaphragmatic Hernia Awareness Day...

Have no plans for Congenital Diaphragmatic Hernia Day – other than wearing turquoise?  Here are some simple things that you can do:
  • Have a candle lighting ceremony – light your candle(s) at 7 PM your time and extinguish them at 8 PM just as you would for International Children’s Memorial Day or Pregnancy and Infant Loss Awareness Day.  Send thoughts or say a prayer for all those affected by CDH.
  • Tell one person about congenital diaphragmatic hernia.
  • Donate blood, if you can.
  • Print off cards with the description or definition of CDH and hand them out randomly – better yet –   do random acts of kindness and hand the card to those you do your good deed for!
  • Post on your blog, carepage or website about Congenital Diaphragmatic Hernia Awareness Day.  Better – turn it turquoise if you can or put one of the Turquoise Awareness Ribbons on your site!
  •  Turn your profile on Facebook or anywhere else Turquoise for the day – or use one of our ribbons!

Have fun!  This should be a day of joy – it is a day we can celebrate awareness of this birth defect – though we always spread the word – this day is something that has been recognized by 34 Governors and States and will soon be recognized by the United States!
We are not stopping this effort – our goal has always been and will always be to have all 50 States Issue Proclamations and for countries to also issue Proclamations too. 

Wednesday, March 24, 2010

The State of Pennsylvania...

Has issued a proclamation for March 31, 2010 to be Congenital Diaphragmatic Hernia Awareness Day.  Thank you Governor Rendell and Stephanie, Porter's Mom!

Help Save Lives - 3rd Annual CDH Awareness Blood Drive

In Kansas City, MO - details are here

To Make an appointment click here

Help children and babies like Sofie, Kinley and MJ! 

Most don't know that second to the ER for use in a hospital for blood, are NICUs.  Staff takes regular blood draws from infants which in turn means they must give them transfusions.  There is no replacement for human blood.  If you can't donate, please pass this on to those who may be able to!

Thursday, March 18, 2010

Wednesday, March 17, 2010

First Annual CDH Walk of Hope - March 27, 2010

There is an amazing family that was touched by congenital diaphragmatic hernia.  There are many amazing families who have been touched by CDH.  This entry is about one in the thousands that have been.  In their grief, they have made their way by trying to do something to help others.  All of them.  We know families can be puzzles of pieces that sometimes just don't fit from time to time but this family has come together to have a special event. If you are in the area - pleas considering attending this event - and walking to celebrate the families affected by CDH.

1st Annual
CDH Walk of Hope
March 27th

1 Mile Walk

Saturday, March 27th Lampe Park Gardnerville, NV

$20 Advanced Registration by March 13th $25 Day of Walk

Walk Starts @ 8:30am-12pm Raffle Prizes $1ea or 6 for $5

To register please mail cash or check to Shannon Minder
106 Mill Creek Drive Coleville, CA 96107
or online at
More information contact Shannon 530-208-6421

MJ is very proud of them!

Happy Saint Patrick's Day

Here's to lying, stealing, and cheating!
May you lie to save a friend;
May you steal the heart of the one you love;
and may you cheat death.
We're on this Earth together,
And if we would be brothers,
Fight not just on your own behalf
But for the sake of others.
May your past be a pleasant memory,
Your future filled with delight and mystery,
Your now a glorious moment,
That fills your life with deep contentment.

May you work like you don't need the money,
Love like you've never been hurt, and
Dance like no one is watching.
May your troubles be less
And your blessings be more.
And nothing but happiness
Come through your door.
May God grant you always...
A sunbeam to warm you,
A moonbeam to charm you,
A sheltering angel, so nothing can harm you.

Saturday, March 13, 2010

Pleasant Hill, California has Proclaimed March 31st, 2010 as...

Congenital Diaphragmatic Hernia Awareness Day - Hayley (Colin's Mommy) will accept the Proclamation Monday, March 15 and make a speech!  Thank you Hayley!  You will do just fine!

Thursday, March 11, 2010

Random Quote

People in their right mind never take pride in their talents.
- To Kill A Mocking Bird - Harper Lee

Tuesday, March 9, 2010

The State of South Carolina - March 31, 2010 is Congenital Diaphragmatic Hernia Awareness Day

Just received word that March 31, 2010 is Congenital Diaphragmatic Hernia Awareness Day in South Carolina!  Thank you Stephanie, Mom of Caleb's Mommy!

Statement on Trademark Congenital Diaphragmatic Hernia Awareness

In light of the ruling regarding the trademark for Congenital Diaphragmatic Hernia Awareness, Breath of Hope has decided to cancel the registered mark. While we feel that the ruling was unfavorable, the Board of Directors at Breath of Hope has decided that we need to move forward in other areas concerning awareness, helping families with this truly horrible diagnosis, and raising money towards research.

Our intentions of trademarking Congenital Diaphragmatic Hernia Awareness were never to stop others from raising awareness, create lawsuits, or negatively impact the CDH community. Instead, we were attempting to protect what we perceive as our intellectual property. It also should be stated there are literally thousands of health conditions as registered trademarks in use today, including Prematurity Awareness Day®, which does not impede anyone from raising awareness or conducting research. 

We, the Board of Directors, are saddened by the misleading, incorrect, and negative information that has been advertised all over the internet by others. We have no intentions of slandering any individuals or other organizations, we feel strongly that this is immature behavior and it is a deterrent from what our goals really are.  We will continue to strive to support parents and families, the medical community and other CDH groups and nonprofits.

- Breath of Hope Board of Directors

Breath of Hope, Inc. © 2010

Part of being a winner is knowing when enough is enough. Sometimes you have to give up the fight and walk away, and move on to something that’s more productive. 
~ Donald Trump

Sunday, March 7, 2010

Why is Awareness for Congenital Diaphragmatic Hernia So Important?

We have told you the facts, five families each and every day have their unborn or newly born child diagnosed in the United States alone.  That of those five families, most never heard of it before that day of diagnoses.  We researched and found that CDH has a rate of occurrence which equals the occurrence of Spina Bifida, Cystic Fibrosis and Congenital Muscular Dystrophy.  It also occurs more often than childhood cancers yet we still have parents contacting us who had never heard of it prior to their child’s diagnoses.
More perplexing is we recently had a parent take their surviving CDH child to a doctor and tell them of their child’s condition and the doctor never heard of it.  They thought CDH was a hospital (there is a hospital).  Now, how frustrating is this, these young children have chronic lung disease due to CDH and should be treated slightly differently than a ‘normal’ child.  The doctor has no idea what a diaphragmatic hernia is.  That the fact this child is surviving is a major miracle that does require their knowledge and experience to be sure they continue to do so.  We imagine this doctor knew of Cystic Fibrosis, Spina Bifida and Muscular Dystrophy.  Not to dispute this particular doctor or any that has not been made aware of this birth defect.  Many more children with CDH are being born today then ten years ago.  Many more are surviving due to the numbers of babies being born with CDH.  Many times during a NICU rotation a resident may not have firsthand knowledge of a diaphragmatic hernia case.  Parents of these babies and the NICUs that care for them will tell you they arrive in “clusters”.  It does not mean that this doctor or any others out there are not good at their work.  They, like many have not been made aware.
When even health professionals who are practicing medicine in this country and others are unaware, we still have work to do.  It isn’t just a day, a month or awareness – it is awareness every day.  The day or month to honor these children and families is a platform.  From that platform we continue to work hard each and every day to support families, educate the general public and inform others of this birth defect.  If a city or a state agrees that this condition deserves a day, it gives us more credibility when we are educating others.  That is the platform.   Why we continue to work to have this day to honor these families and the health professionals who work the front line to save these children and research to one day bring the survival rates to a higher level.  Why we wear Turquoise in unity to make an impactual statement to the world.  Why we continue to raise awareness.  Why we continue to write letters to our Mayors, Governors, Legislators to make this day Congenital Diaphragmatic Hernia Awareness Day.  From that platform we continue to launch awareness, education and support.
*impactual is not a word recognized in the dictionary - however one I use because I believe it should be!

Breath of Hope, Inc. © 2010