Breath of Hope CDH Jamberry Fundraiser

An amazing Mom of a CDH survivor, Lindsey, is hosting a CDH Jamberry Fundraiser.  Proceeds from the sales will come to Breath of Hope and we will add them to our Research Fund.  She is having games where you win free samples and you can even contact her if you know others who may want to order or participate.  The event is on Facebook. 

Jamberry Wraps are for finger and toe nails and the last up to 2 weeks.  There is even custom wraps with the CDH Awareness Ribbon to order. 

And if you order three you get one free from Lindsey's website

You do not have to be on Facebook to order you can order HERE

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.

Breath of Hope's Expectant - New Parent Package

Since January 2007, Breath of Hope has been giving expectant/new parents of congenital diaphragmatic hernia infants packages. They have always included receiving blankets (2) acceptable by all NICUs and a hand print kit. They also include our Expectant Parent Booklet, NICU Equipment Booklet, NICU Terms Brochure and In the Event of an Angel (which is delivered in a sealed envelope - to be opened in the event of an angel).

We also now include My NICU Baby Book, ribbons, wristbands and Infant Mittens.

Over 200 of these packages have been distributed some as far as Taipei, China to Australia and Canada and all through the United States.

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

Breath of Hope promotes International Children's Memorial Day

At 7 PM on Sunday, December 13th, light a candle - at 8 PM extinguish it - so the children who became angels too soon will see the light travel around the world.

This event was originally started and promoted by Compassionate Friends - we thank them for this amazing event.

The overall survival rate of congenital diaphragmatic hernia, even with all the medical advances is still 50% - the others choose wings over feet.

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.