We Need More CDH Organizations

Did you know that according to Guidestar there are only three nonprofit organizations for congenital diaphragmatic hernia?  Guidestar may not have new charitable organizations listed or those who have not submitted their information.  How many organizations are there for spina bifida?  One hundred and fifty-four listed in Guidestar and two hundred and ten for cystic fibrosis.  Ask yourself this question, why are more in your communities not aware of CDH? 

What truly is the problem?  

We need more community organizations who work within their areas and with their hospitals to help families and further research from all over.  Local organizations can give back within their own communities and are more aware of what families will need when faced having a CDH baby.  They can outreach to other community organizations for help and resources and work with the hospitals and physicians in their areas.  

Breath of Hope will continue to provide the services we do and the programs we have but we will also be working to help others start up their organizations if they have the desire, enthusiasm and commitment to do so.  Please feel free to contact us at Elizabeth@breathofhopeinc.com and we will be happy to help you!  

Enthusiasm is one of the most powerful engines of success. When you do a thing, do it with all your might. Put your whole soul into it. Stamp it with your own personality. Be active, be energetic, be enthusiastic and faithful, and you will accomplish your object. Nothing great was ever achieved without enthusiasm. ― Ralph Waldo Emerson

CDH Genetic Research and What Will be the Results?

Recently we became aware of another CDH Genetic Study which has made headlines and we appreciate all the research so many out there are doing and we even encourage families to participate.  This is not in any way to be interpreted that we are discouraging the research at all.  We are looking into the future and what will this information mean?  These are important questions to ask and to realize answers sometimes lead to even more questions. 

There have been several genes and micro deletion of genes and syndromes which appear to be prevalent with those affected by CDH with no real consistency.  Why we have always believed as many doctors do out there that CDH is is considered a multifactorial condition, simply meaning they don’t know what causes it but they believe it is caused by many factors together.  It could be that an exposure did something to cause a gene to have a micro deletion or not be as it should.  With added genes, we know this could occur during conception itself. 

We now know women who who are trying to conceive or are pregnant to prevent Neural tube defects should take the B-vitamin folic acid.  Prenatal vitamins contain B-vitamin folic acid. Many thanks to the March of Dimes for the research provided. We also know, not always does this prevent Neural tube defects from occurring.  We also now have testing which may predict many birth defects and we know through Amniocentesis is used to diagnose chromosomal and other fetal problems.  However, it does not prevent these birth defects.  It predicts them, diagnoses them, but in no way does it treat them.  

If through all the studies of genetics and congenital diaphragmatic hernia, there is discovery of genes, genomes or micro deletion of genes, what then?  Again, we are predicting and diagnosing but not preventing them.  And if you prevent them, this means you would not have that child affected by CDH.  What of the individuals who may be marked as carriers, would they be cautioned to never have children?  We have families who have been diagnosed as carriers and who do take the chance (and have had beautiful and healthy children).

If in the future, they could manipulate the genes, could that possibly cause other issues?  These studies are all in process and we truly do appreciate the research and time and funding going into them.  As we look beyond when there are answers to the how and whys the deeper questions will be how are they treated?  As stated at the top of this blog post, answers are being found or appear to be on the horizon but once we have these, there are more questions.  

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. 

New Year, New Initiatives

Each year at this time we all reflect.  We don't just reflect on the last year but often times on our entire lives.  So should nonprofit organizations.  We should carefully reflect upon what our supporters truly need and want and focus our missions and programs on those needs and wants. 

Breath of Hope has been evaluating itself as a nonprofit charity and we do so with much more criticism within than anyone could do from outside.  Often we hear from families and other nonprofits how the larger nonprofits are not personable, they have lost their sense of mission and do not focus on the ever changing needs of their supporters.  We are taking that to heart and will be unveiling a new program to focus on families regionally or within areas to give more local support.  This will not negate our national programs but hopefully strengthen local support initiatives and fundraising  which would keep funding close to home and truly benefit those within the community affected by congenital diaphragmatic hernia. 

We hope each and every one of you remembers the blessings of 2013 and has hope for 2014.

Try A Little Kindness...

Holidays are wonderful.  Holidays can be stressful.  Holidays can be overwhelming.  Holidays can be depressing.  Holidays are a hodgepodge of emotions and feelings.  Many of us are out shopping and trying to get so much done on top of our never ending list of things "to do".

Black Friday brings out the worst in many and we see news stories which make us all shake our heads in disbelief.  Out on the road ways there are folks rushing to their child's daycare or play or perhaps just shopping or going to work or the hospital to visit a sick relative or friend.  People can be so rude.  Sometimes we all have moments.

Hold the door open for someone behind you.  Let that one driver out into the traffic lane who has been waiting for so long.  Don't try to beat someone to a parking place and remember, it all will work out in the end.  Try a little kindness.  If we all stopped and tried to be a bit kinder, smile at a stranger or helped another just a little, the world would be a better place.  (It will also bring your blood pressure and stress levels down.)

Check on friends who have loved ones in the hospital or are facing their first or second holiday without their precious child, grandparent or parent.  Just let them know you care.  Remember your neighbors and bake a batch of cookies or even buy that dreaded Fruit Cake to give them - it is the thought that counts.   (Just don't be surprised if you receive it as a gift next year from the same neighbor!  Again, it is the thought!)

Remember this time of year is about giving and goodness.  This is the time of year about kindness and faith.  Enjoy or find peace, you will never have this holiday in 2014 again.  Make it memorable. 

My religion is very simple. My religion is kindness. ― Dalai Lama XIV

2014 Faces of CDH Calendar Now Available!

The 2014 Faces of CDH Calendar is now available on Cafepress.  Regular size is $15.99 and Oversized calendar is $19.99 at the Breath of Hope Cafepress site, just click on the words and you will open a new window to the shop.  You can also go out to the Cafepress site and they always have coupon codes you can use to reduce the price, which may be less than what is on our site - or may not.  We encourage you to compare the pricing! 

Each year we do this calendar to show the faces of CDH, angels, survivors, adults, teens and babes.  It is astounding how many have grown up over the years.

Thank you for all who sent in your child's photos and thank you for purchasing a calendar as a gift for yourself, friends, family or that special nurse or doctor!

Reflection...

Reflection can be painful, but reflection can also be productive. ― Charlotte Pearson

Each year around this time, I always reflect back.  You see, 14 years ago, I had learned of congenital diaphragmatic hernia and knew the unborn baby I was carrying was diagnosed with very severe CDH.  Today is her birthday.  I still have friends who I have known since being diagnosed who also had children who survived and did not survive CDH.  Many of them, I have only known virtually but they have touched my heart in ways some family and friends I have known all my life never could.  You see, our daughter didn’t make it but she did fight the good fight.  Those early years of grief were the worst.  I truly cannot recall much about current events at that time, I was doing a good job just keeping up with the basic things in my life then.  Researching diaphragmatic hernia became my hobby or obsession, not sure which one.   

I’ve looked back on our journey and the basic things Breath of Hope has provided to families are things I felt were needed or not provided during our own journey.  Today, the diagnosis is a bit better if you get to the major hospitals with the experience to take care of these babies.  Today, I know if our daughter was born, she might just be a survivor.  But there are not do-overs or instant replays in this life like that.  I can tell you, I am content today.  I am at peace.  

I reflect back that I never would have chosen to be part of the CDH community but feel today I am privileged to be a member of it.  I also reflect, I would rather have known that beautiful creature for 38 glorious and tragic days then have never had her touch my life at all.  Sometimes our blessings come in disguise.

H.A.L.T. - Take Care of Yourself

"Don’t sacrifice yourself too much, because if you sacrifice too much there’s nothing else you can give and nobody will care for you.” ―Karl Lagerfield

Mr. Lagerfield not only knew fashion, he knew human nature.

I saw a post from a new Mom who recently brought her adorable CDH baby home about how she had not taken a shower, truly felt she didn't have time in taking care of her child and this inspired this post.  Often times parents, expecially those of these children put their own basic needs at the bottom of their endless to dos they do on an hourly or daily basis and the results are not good.  This also applies to our grieving families too  Grief is very hard work. 

H.A.L.T. is a self-care tool.

H is for hunger, we need fuel to live, nutrition to keep our energy levels up and  lack of nutrition can lead to illness.  If you just can't make meals, stock up on healthy snacks, drink tea (herbal is best but black tea is fine too) through the day and water rather than caffeinated drinks all day.  You will not "crash and burn".  Ask others for help and be specific.  If you know your good friend makes the best vegetable soup ask if they will make you some to get you through this overwhelming time!  Most great friends would love to help and that is a very small thing that is truly appreciated.

A is for anger.  Often times with this diagnoses of CDH there is anger.  Why does a child, mine or anyone else's child have to endure this birth defect?  We are robbed of the perfect pregnancy and the typical ideal birth and going home.  It isn't fair, nor is life but we hope through it all it balances itself out in the end.  Do not suppress your anger.  It will manifest itself and come out in unproductive ways.  Writing about it can help, exercise can help and expressing it can help in a controlled way.  If you have trouble with this, do not be ashamed of asking for help from a professional counselor or clergy. 

L is for loneliness, our experiences can make us so isolated from the rest of the world.  There are wonderful on-line groups through forums or Facebook where you can communicate to other new or grieving parents who understand what you are going through.  Often times one person will express something others may not have realized they experienced or are going through themselves.  Feeling that connection can help.  For grieving families look into local groups of Compassionate Friends or others which may meet once a month.  For couples, take at least a couple of hours a month to have a date.  Go for a quick dinner, an ice cream cone or a walk around the block.  Listen to one another, it doesn't mean you are both going to be on the same page but respect what the other is going through.

T is for tired.  This is a tough one.  Often times many of our families have suffered with insomnia.  It is a nasty side effect of being a family of a CDH baby sometimes.  Some of the sleeplessness is normal for new parents and grieving parents too.  Try to get into a regular routine. Do not feel you have to do everything at once.  Pick one thing to "keep up with", laundry comes to mind and let the other things slide so you can rest or sleep.  If you continue to have problems sleeping or getting enough rest, consult your doctor who can help and come up with a solution.

Above all - realize all combined, you are far too overwhelmed to take care of anyone well and often times we lash out at others.  Apologize for this and do not make any judgements, hard decisions or take action until you HALT and rejuvenate yourself.  You can't take care of others if you don't take care of yourself first.  There is no shame in asking for help, in fact, it is a sign of strength to know you are overwhelmed you need help. 

We are often contacted when a family just learns their unborn or new born baby has been diagnosed with congenital diaphragmatic hernia.  We offer to send them a package with information we compiled from our families, painstakingly edited it and had medical advisers review and edit the information also.  In January, we also had a copy righter review them so they were easier to read.  We also provide infant blankets, hand print kits, Socks for Surgery socks, Guava Infant Mittens and a variety of other things donated by families we have on hand at that time.  We then hope and pray their baby will be of the 60% who will survive.  In some hospitals, it is up to 75% or higher.

Very often parents contact us after their child goes home or becomes an angel and they tell us how much they are amazed with the CDH Community, those that have reached out and encouraged them when they felt helpless or at their lowest.  How they found comfort in the words we wrote them, the items we gave them or the kindness of complete strangers who have this CDH Connection gave them.  How can they ever repay it?  They do, in turn they pay it forward by reaching out, being kind and keeping other babies and families in their hearts.  So much sometimes they must take a break, but they come back.

This blog post is about thanking all of you for reaching out, stepping forward, sharing your wisdom and children with those who just begin this journey forward.  We know not what will happen but we have hope that their child will be one that does pull it out and Kick CDH Booty.  Even the angels do some butt kicking of CDH and are miracles too.

Just remember to take care of you through this all too!  Thank you! 

The Frontline for Hope

A new series is featured Saturday nights at 6:30 on KSDK NewsChannel 5 titled The Frontline for Hope featuring patients, families and the doctors, nurses and staff at Saint Louis Children's Hospital.  The first episode premiered Saturday, March 16 and is now available for all to view on line.  We recognize many of our families and the amazing staff in Episode 1.  < Click on Episode 1 to take you to the website and view but before you do, grab a box of tissues!  

Thank you to those that put this together!