2015 Resolution for CDH Awareness Day Proclamation?

Have you made resolutions for 2015?  Are you going to?  How about making a resolution to write your Governor and request March 31^st Proclaimed Congenital Diaphragmatic Hernia Day in your state and/or your Mayor for your city/town?  We have the documents for you to either mail in or copy and paste into email or website contact forms to your state authorities.  Note:  If your governor was just elected into office this past November, please wait until they are sworn into office. Email Elizabeth@breathofhopeinc.com for the documents! 

Note:  As always, you keep the Proclamation when it arrives; we just ask that you send us a picture!  We also have fundraising ideas to help benefit CDH Research and Support! 

March! It is Congenital Diaphragmatic Hernia Awareness Month!

For seven years families across the United States have been writing their Mayors, Governors and other officials requesting Proclamations to bring awareness for congenital diaphragmatic hernia.  We have always known that from awareness brings more research.  Over the last few decades survival rates have increased from 50% overall to about 67%.  Our NIH is also more involved thanks to the many families who have contacted their legislators and made them aware of this often unheard of birth defect.  It is through the efforts of families and friends who have fundraisers to help families, raise awareness or raise funds for medical research that we educate our communities.  One day we hope families who contact us will have at least heard of CDH prior to their newborn or unborn child being diagnosed.  

This is also a month that many families reflect on the experience of the diagnoses, of when they first became aware of CDH.  To be told your unborn or newborn child may die is not what we expected to hear when we had our ultrasound or gave birth.  Families who have had their child choose wings over feet want to educate others not just in their child’s memory but so others are perhaps more prepared than they.  Those who have a child come home are all too aware of the struggles of taking care of a child with medical needs or if they don’t have them, worried that one of the other accessories which sometimes coincides with CDH will appear.  Some say they “hate” CDH or CDH “sucks”, no argument there it is something battled every day by organizations, hospitals and families.  We hope one day it is more manageable and less mysterious so doctors will not have to tell a family, “we have done all we can do”.  

There is a hidden oasis in the diagnoses, the people and families you meet through the experience are the people you want in your life.  Strangers from across the nation will step up and help when some friends may have bailed on you.  The doctors and nurses we meet on our journey we learn the profession chose them, they go the extra mile and they work hard so all families will bring their babies home.  Their hearts are in it.  

As you reflect on your own awareness this month, also reflect on all the blessings and amazing people who have been brought into your life through CDH.  Congenital Diaphragmatic Hernia is twofold, bad and good – just as life, it is how we roll with it that makes the difference.

If you would like a graphic ribbon with your child’s name on it, as below, please feel free to email Elizabeth@breathofhopeinc.com or Private Message our Breath of Hope Facebook Page.  It is a pleasure to make these for families – they are yours to use any way you wish and we are happy to enlarge them or provide different file formats if you need them for shirts or printing! 

7th Annual Congenital Diaphragmatic Hernia Awareness Day 2014

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

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

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

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

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

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

2012 Virtual Walk/Run for CDH Awareness - March 31st

What to do?  Here is one idea from one of the CDH Moms - here is her blog - click HERE

Grab some friends, head out to a local park, neighborhood or anywhere you love to walk and run and run and walk!  Take pictures of you in your turquoise and possibly wearing these or the other "bibs" offered:

If these do not print well for you - please feel free to contact us (cdhawareness@breathofhopeinc.com) and we can send you the originals!  Take pictures and share too! 

Turquoise Spread to the White House

On March 15, 2011 one of our amazing Turquoise Warriors had her "wish" from Make A Wish Foundation granted.  Most 4 year olds would request a trip to Disney, meeting Dora the Explorer or even today, Hanna Montanna not this amazing girl.  She wished to meet President Barack Obama.  

Her mother reported the day was better than expected.  They were able to bowl a frame at the White House Bowling Alley, Kennedy got to play with Bo, the Presidential Dog and  she entertained the Secret Service!  When she met the  President, she gave him a hug and some Turquoise to wear.  President Obama put on one of our wristbands we sent to this amazing family.  

We know the President was probably very aware of congenital diaphragmatic hernia, thanks to all the efforts from families and individuals out there making requests of their states and localities to issue Proclamations and Resolutions for March 31st to be CDH Awareness Day for now 4 years in a row and Senate Resolution 204 passed without amendment.

Congenital Diaphragmatic Hernia Awareness Day is bi-partisan - please do not think this little girl's wish, or this posting is nothing more than celebrating further awareness of this devastating birth defect.  Each effort, no matter how big or small is important.  

As one of our parents said, "If you're cool enough to be wearing a Breath of Hope turquoise band...you're cool enough to hang with the President of the USA! He's sporting his NOW!! How exciting for the CDH world!!!"  

Or just maybe he is cool enough to hang with all of us!

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 31^st 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!

S. Resolution 204 - National Congenital Diaphragmatic Hernia Awareness Day - March 31, 2010

Success is not measured by what you accomplish, but by the opposition you have encountered, and the courage with which you have maintained the struggle against overwhelming odds.” 

- Orison Swett Marden

The Senate passed S. Resolution 204 for March 31, 2010 to be Congenital Diaphragmatic Hernia Awareness Day please click here to see this - this was done unanimously on April 14, 2010. Breath of Hope and other organizations have faced fierce opposition but this is proof that good prevails.

Since we started this campaign in 2007, there have been six entities that have started conducting medical research to benefit Congenital Diaphragmatic Hernia. Awareness leads to medical research that will lead to answers and treatments.

Pennsylvania Proclamation for March 31, 2010

Pleasant Hill, California Issued Proclamation!

To See Hayley accept the Proclamation and say a few words about Congenital Diaphragmatic Hernia, please go here: 

click on the "Council announcements and reports

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

Happy New Year 2010

We wanted to wish all a happy and safe New Years 2010.

We know this year has been filled with the diagnoses of CDH babies. Some yet to be born, some born and fighting like the little warriors they are and some who found that wings would be more fun than feet. We are blessed to have known them all.

Keep them all in your hearts, thoughts and prayers as we embark on a New Year to bring more awareness to this birth defect, more advances in Medical Research and support for families.

Let Congenital Diaphragmatic Hernia Awareness Take Flight

We will customize this graphic for other organizations, individuals - in memory or in honor of their child. Contact us at boh@breathofhopeinc.com

We will also design a t-shirt with this graphic - 100% of all proceeds raised will go to Medical Research at a Medical Center to help benefit the research on congenital diaphragmatic hernia. Thus far, 2009 Financial Reports have over 50% of all donations raised for Breath of Hope, Inc. have been redirected to Medical Research.

Happy Holidays, Merry Christmas and Peace on Earth...

CDH Awareness Day - A Grassroots Effort

When Breath of Hope started the Congenital Diaphragmatic Hernia Awareness Day^® Campaign in July 2007, our Board of Directors each wrote a letter and supplied a sample proclamation to their respective state Governors. There is room in the letters for those affected by congenital diaphragmatic hernia to share their stories. We didn’t know if it was going to work. my letter was sent to Governor Tim Kaine. We started to get Proclamations in from other states in the United States . Those of us who had sent in letters and not received proclamations wondered why our states were not responding. Several of us called our Governors' offices and we were told they don’t issue them until a few months prior to the day of the request and was assured that it would be honored.

Later, I was called in February 2008 and told that congenital diaphragmatic hernia covered several other birth defects and they were thinking of doing a Proclamation in Virginia to cover all Birth Defects. (That includes birth marks, correct?) - I felt defeated. I also felt elated because we had 31 states issue Proclamations and Resolutions for March 31, 2008 to be Congenital Diaphragmatic Hernia Awareness Day.

The empowerment that it gives people that a simple request can make a day to honor these families, memorialize the angels lost to this devastating birth defect and also educate the general public to this very common birth defect that is rarely heard of. There is nothing rare with CDH – it affects just as many families as spina bifida, cystic fibrosis, congenital muscular dystrophy and other birth defects which have long received more attention.

Every day 5 families are diagnosed in the US alone. Truly this is a low estimate based upon figures out there because how many are not counted because their families chose to birth early, they were stillborn or they didn’t make it to surgery? Many states do not take accurate data on disease and birth defects. (We are seeing that with reported H1N1 cases in the US now.) This is something that also needs to change and is part of the platform of raising awareness for congenital diaphragmatic hernia.

In early 2009, while checking the Commonwealth of Virginia ’s website and reviewing the Resolutions for 2008, among them was “Congenital Heart Defects Awareness Day”. Now, it is wonderful to have a day because heart defects also need awareness too! Children who are born or diagnosed with CDH sometimes also CHD but congenital heart defects encompass several different birth defects of the heart too. It was then I contacted the Governor’s Office again and also sent in another letter and sample proclamation. I was referred to the Commonwealth of Virginia ’s Bureau of Vital Statistics. I heard back from two amazing women one who asked me “What do you think causes congenital diaphragmatic hernia?” I was taken aback from that question but she explained she likes to hear what parents think. (I liked that too!) These ladies referred me to the Executive Assistant to our Secretary of Health for Virginia . He called me back and told me to send him an email with the information and I did.

After Awareness Day – March 31, 2009 passed – I figured I would fight again for 2010 in Virginia. I then received the Resolution, signed by Governor Tim Kaine. I had long made a promise that this Proclamation would be framed and given to the University of Virginia Medical Center NICU . They deserved this acknowledgement for one of the many birth defects they are on the front lines battling every day. Apparently the University of Virginia also thought this was a good thing since it was featured here in their LINK Newsletter.

I imagine I felt as many did when they received this simple piece of paper, empowered that I had actually done something to make a difference and here was proof. It didn’t have my name on it, or my child’s name either – but it carried with it all the names of all the families who have been affected by CDH and those who help them.

One thing about the families of congenital diaphragmatic hernia – we all are tenacious and determined in our causes and fights. By directing that energy to something that does make a difference – and will make more aware of this birth defect – that gives us hope. Hope that one day the survival rates through research will increase, hope that the children surviving CDH will have more access to medical and therapeutic care that will assist them in having less residuals and an even higher quality of life. These families need that. We as a society need this because the better care, the more we know the less suffering.

Well, what does a day do? Sure, there are Proclamations and Resolutions issued by states and our congress we often wonder why but it does make us more aware and the politicians who vote for medical funding to be diverted to studies to know about congenital diaphragmatic hernia. Would you vote to have funds directed to a birth defect for research if you had no idea what it was? Some would but many would like to know more about what they are voting for and what sort of impact it could make to society and medicine. We know these doctors, nurses and therapists who work on the front lines, shoulder to shoulder with the parents are equally as frustrated and devastated with this birth defect.

An Awareness Day brings notice to these politicians. Senator Clinton was handed a brochure from Breath of Hope during her campaign, and she was impressed that a Proclamation was issued in Iowa . (Thanks to Terri, Ava’s Mommy, who wrote her governor and also handed that brochure to then Senator Clinton).This is a truly grassroots effort of parents, friends, family and medical professionals pushing forward to making a difference. If you would like to join us in this fight to make a difference, please contact us at cdhawareness@ breathofhopeinc. com and we will be thrilled to send you the information to send on to your Governor or Mayor. If you wonder what you can do on this day to bring attention, honor these families please contact us – it can be something as simple as a candle ceremony in your home or church or as big as a press conference that generated thousands of dollars to Medical Research to benefit congenital diaphragmatic hernia which was picked up by the Associated Press – or something in between.