Breath of Hope, Inc. | Congenital Diaphragmatic Hernia Awareness

Angel Luke - Face of CDH

2012-01-27T11:15:00.000-05:00

Many parents of children who are diagnosed with congenital diaphragmatic hernia find there appears to be some divine intervention which evolves. From the hospitals we choose, to the random people who come into our lives to make us feel not as alone, confident we can take on anything this diagnoses brings us and who just make our lives better in the worst situation we find ourselves in. Jean, Luke's Mommy, is probably one of the most supportive CDH parents out there. She is the hugest advocate for CDH Awareness and Education and she has the most wicked sense of humor. You have to have a sense of humor to have 9 children! Yes, nine! Here is her amazing son's story - grab a tissue box and know you will have tears, smiles and chills just reading it!

In Luke's Mommy's words:

While I was spending my last hours with Luke, I was trying to keep my wits about me and trying to think of everything that needed to be done before I could let him go. We had Luke baptized by the Priest on call at the hospital and then he had to leave but gave me his pager number to call him whenever I needed or wanted him back. Before I could let Luke go, I had to make sure that all my other kids were in one place together. The younger six were with my oldest sister at her house and my older two stayed at our home. They both work full-time and being 18 and 19 and they can stay home by themselves. I wanted to be sure that Ralph and Robert got to my sister's home. I wanted them to all be together when they heard the news.

I wanted a priest to come in and just say a few words to help Luke on his way to join all the other angels. A friend from my parish in Owensville was up at the hospital with us and she was trying to get in touch with our Parish Priest. No one in Owensville could find him. She kept trying to find him but she also started calling a few other Priests from neighboring Parishes with no response. The hospital chaplain tried to contact the on-call Priest who had come by earlier to baptize Luke but had left. For the first time in 12 years, the pager system went on the blink. Heidi (my friend) one of my sisters and some of the nurses in the NICU started calling around looking for a Priest for me, not one could be found. Like a police officer, whenever you need one, there's never one around. One surgeon who had evaluated Luke earlier in the day and gave me the news that there was nothing more that could be done for Luke and one of Luke's nurses from earlier that day, went out looking for a priest for me. Both the surgeon and nurse were off for the day.

A few blocks from the hospital there is New Cathedral in St. Louis. The surgeon and nurse went there to find a Priest. (They told me they would “hijack” a Priest for Luke.) They could not find one there. So they came back, meanwhile, my Parish Priest still was nowhere to be found. A Priest from a town down the road called Heidi back but he was on vacation and 200 miles away from St. Louis he did offer to come if I really needed him, he'd start traveling back right away. The on-call Priest was finally contacted, he was at his Parish but he was in the middle of a marriage class and he said he'd come in but he was on the other side of town. My niece had called her mother and my other sister, the Minister from their church would be happy to come in if I wanted, he wasn’t Catholic. Not that I would have minded, I wanted a Priest if at all possible. My other sister's husband (who was at the hospital with me) had called their Parish Priest and he was prepared to come into the hospital for me.

While all this was going on, I had five Priests are coming, we get news that the same nurse who had gone looking for a Priest earlier, went back to the New Cathedral and was waiting in the parking lot when she saw a Priest heading for his car. She stopped him and she explained to him what was going on. He dropped everything and came to the hospital. So now I have a Priest coming to say a few kind inspirational words to help Luke get those wings of his and fly up to heaven. Ironically, this Priest was not a Priest but a Bishop. Yes, one of the NICU nurses from St. Louis Children's Hospital in St. Louis hijacked a Bishop for a patient. This Bishop was heading to an important meeting and dropped everything to go with this nurse. She must have been pretty convincing.

Another part of this irony, this Bishop twenty years ago was a Parish Priest at the Parish where I grew up. He was the Parish Priest that twenty years ago married my husband and me. So Bishop Hermann got to the hospital and he had no idea he was going to help comfort two people who he married twenty years ago. He said some of the most beautiful inspirational words to help my little boy on his way to heaven.

So I started thinking God knew and still knows I was not very happy with Him because of all that went on with Luke so I think God sent me a bishop to appease me a bit. Not too many people get a "hijacked" Bishop to come to the NICU and say a few inspirational words over their dying son. Even though I still do not have the answer to "WHY?" Luke, I did get a "hijacked" bishop. So I haven't given up on God yet and I very much doubt I ever will. I'm still very angry with Him and I think it’s going to be that way for a long while. I hope I haven't offended anyone with my story but it was just a little something that has kept me going and I wanted to share it. My faith has taken a blow but it’s still there and with time it'll come back and probably twice as strong. The one point of this story is I'm working my way back slowly into the world and with all of your love and support and the love and support from my family and friends, I'll get there.

Jean - Mother of nine!!! Eight Earthly Angels(Ralph,
Rob,Nick,Abby,Anna,Clint,Joe,Sophie)-One Heavenly Angel-Luke Matthew
6/12/2007-6/12/2007-FOREVER IN OUR HEARTS!!!!!

Daphne, One Determined Little Girl!

2012-01-17T12:21:00.000-05:00

The Start - in the NICU

In her parents own words:

Daphne Angela is our 2 year old Earthly Angel.

Daphne's Congenital Diaphragmatic Hernia (CDH) was diagnosed in-utero in the 33rd week of pregnacy. Her CDH was left-sided with all of her intestines, her stomach and her spleen in her chest cavity, displacing her heart and crushing her lungs. Daphne was born at 38 weeks, just before midnight on September 23, 2009, at Evanston Hospital in Evanston Illinois. Evanston Hospital was the closest hospital near us with a Level III NICU. It was several weeks before Daphne was stable enough for her first CDH-related surgery. Her first hospitalization lasted until the very end of November 2009. Following her discharge, she required physical, occuptional, and feeding therapies, as well frequent follow-ups with her pediatrician, pediatric surgeon, pediatric GI, pediatric cardiologist, and pediatric ENT. CDH-related complications required Daphne to undergo additional medical procedures in June, July and August 2010, and, thankfully, her g-tube was removed on August 27, 2010.

Thanksgiving 2010 was a wonderful time and we celebrated it with family. Daphne was walking and even climbing on furniture, and she had so much fun with her little cousins.

On December 16, 2010, just when we thought everything smooth sailing, Daphne started having strange symtoms involving gagging, lethargia, and she absolutely refused to eat or drink. We took her to the ER by our home. The doctors admitted not knowing too much about CDH-related complications and, at first, told us to go home and said it was "just a stomach bug". However, after insisting on further testing, Daphne was admitted for observation. By 4 AM on Saturday, December 18, 2010, Daphne was in critical condition and needed to be transported to a hospital with a dedicated pediatric intensive care unit (which turned out to be Comer Children's Hospital at the University of Chicago 20 miles away). It turned out that Daphne had a total bowel obstruction caued by adhesions from her original CDH repair surgery in 2009 which had wrapped around a bend in her small intestine like a tourniquet. Emergency surgery was performed and Daphne was on life support (again) for several days after. Daphne spent Christmas 2010 in the hospital and sufferred complications requiring additional hospitalization until the end of January 2011.

Over the course of this 2011, Daphne continued her struggle to overcome various CDH-related issues and her friends and family remain cautiously optomistic about her future.

Hopefully CDH Awareness Day will help make medical professionals as well as lay people familiar with the condition, its frequency, and its associated long-term complications so that they think outside the box when CDH children become ill without any other apparent explanation.

I want to thank all of the people who run Breath of Hope, Inc. and who share their experiences and valuable insights on this list serve.

-Dina and Barry

Nothing is Stopping her Now! :)

The Faces of Congenital Diaphragmatic Hernia - Featured Faces of CDH

2012-01-12T08:44:00.000-05:00

Breath of Hope will feature a child and their family who has been affected by congenital diaphragmatic hernia each week (or more if we receive more submissions)! We continue to put a Face to CDH to achieve more awareness.

If you are a parent who would like to participate, please send your child's photos and information to cdhawareness@breathofhopeinc.com you can submit as much about their story or as little too. Just their first names, hospital they were treated and birthdays are enough with photos but if you would like to share more about your journey with CDH, we welcome this too! Each story and face will be honored here - no two are the same but all are amazing and beautiful!

And remember, if you would like to have your area, state to issue a Proclamation or Resolution to have March 31st as Congenital Diaphragmatic Hernia Awareness Day for 2012, contact us also at cdhawareness@breathofhopeinc.com - we will send you the necessary documents. When you receive the documents from your City or State - you keep it - we just would like a picture or scan of the document! Thank you!

Benefit for Isaac's Family!

2012-01-05T20:53:00.000-05:00

Benefit for Isaac Rhodes Family in Hannibal , MO on Saturday, January 21, 2012 at 7 PM

This is a Bowling Tournament cost is $15 per person for 4 games!

If you are in the area or have friends or family in the area - please share this information!

2011-12-31T14:28:00.000-05:00

It’s New Year’s Eve. Breath of Hope has lots of plans for the coming year. At the moment families have children in hospitals, some are facing CDH and the unknown, many are rolling up their sleeves and thinking of ideas to raise more awareness, support and helping research. As we reflect on 2011, we have seen tragedy and cried with families. We have prayed for spiritual strength and held our families in our hearts. We have hoped our love and support has helped hearts mend. And we have seen miracles, where no logical person would ever put money down on the odds faced but faith came through! We know miracles happen every day and we cry tears of joy when they beat the odds and go home! We know our information and support gives hope in hopeless situations. To you all who have supported us through 2011, WE THANK YOU. From donations, to invaluable volunteer time and good thoughts and prayers - THANK YOU. You have allowed us to close another successful year of supporting CDH children and their families – our 6th. We wish you joy, peace and prosperity in 2012. We hope you will continue to stand by us.

Happy Hanukkah from Breath of Hope!

2011-12-20T16:51:00.000-05:00

Wishing those who celebrate a very happy Hanukkah!

Will you help?

2011-11-29T12:51:00.001-05:00

If you are out cyber shopping (which appears to be safer than going out to some malls and shopping centers), we have several amazing fundraisers which you can purchase items for gifts for someone else or yourself!

A portion of their small product merchandise sales will be donated to Breath of Hope until January 2012! Their connection to congenital Diaphragmatic Hernia? Aunt to a CDH Survivor, Em!

Their cutting boards are amazing. They are carved from one portion of wood which makes cutting on them very smooth. Their cutting board oil comes in Lemon or Rosemary and is equally amazing. When you use it on not only cutting boards but other wooden items, it absorbs into the wood, leaving very little oil behind for clean up. These would make wonderful gifts for the cook or someone who has most everything! You can go to their blog here for more information on ordering from them. Their service is also impeccable! Click HERE.

Do you have a cook in the family? Someone you know who just moved into their own house or who would like some truly amazing items. Pampered Chef has something for anyone!

Grilling Gift Set is $20.00, Apple Wedger - great for the apple lover or parents $13.00, Cut-n-Seal - great for sandwiches for kids $9.50, Dripless/Pourer Stopper for your favorite wine $10.50. These are just a few of the amazing items you can give as gifts for someone special or yourself! Go to this Link HERE Click "Shop On Line" and enter "Breath" - Spend $60 and get a FREE classic batter bowl or measuring cup set with your purchase! Click on the "Guest Special" on the left side of the choices and choose which item you would like FREE with your order! A portion of the proceeds raised will go to Breath of Hope. Alexandra, is the Mom of Gabriel, CDH Survivor and is the Consultant for Pampered Chef. Thank you Alexandra for this opportunity!

In partnership with Benefit Wines, Breath of Hope is introducing their new line of charity wines - ABC Cellars - a lineup of six estate grown imported wines. These delectable wines, imported from Lontue Valley, Chile and Catalunya, Spain are highly rated and affordably priced for the wine and charity lover. A significant portion of the purchase price is donated to Breath of Hope to continue charitable efforts! These wines are certified organic and vegan! Plus - Starting November 25th they will be 20% OFF - that is right, all orders will be 20% off from November 25 - December 16th! Here is the LINK to the site: http://www.benefitwines.com/breathofhope_s/303.htm

Through Greatmoods, Breath of Hope has their own site HERE - Gift baskets are a wonderful idea to send to people far away or to give to business associates and friends and family! There are a variety of gift baskets and Breath of Hope receives a portion of the proceeds.

On a budget? Do you search or shop on line and the above items do not appeal to you - or are not on your list to purchase during the season? Good Search or GoodShop for Breath of Hope. GoodShop has thousands of on-line retailers who donate a portion of the sale to charity. Or if you use GoodSearch - each search earns 1 cent or more for charity! 100 searches = $1.00! These add up! Choose Breath of Hope in Charlottesville, VA as your charity and all searches or a portion of your order when you use GoodShop will go to Breath of Hope. It costs nothing! You can even download their tool bar to place on your browser and never have to worry about going to the site again!

You can also donate to Breath of Hope in someone's honor or memory as a gift, you can mail your checks to Breath of Hope, PO Box 6627, Charlottesville VA 22906 or you can visit our website to make a donation on line. We will send the person or family you donate in honor or memory - an acknowledgement letter and certificate.

Please feel free to share this information with friends and family! If these items do not meet your needs for gift giving, they may fill someone else you know!

As always - thank you for your support!

‘Tis the Season – RSV, Flu and other to avoid

2011-11-13T12:36:00.000-05:00

Parents of children who survive congenital diaphragmatic hernias usually go into hibernation during this season. They are vigilant in hand washing, using hand sanitizers and advocating that no one come near their child(ren) with a cold. (They don’t care if it is “allergies” – a sniffle to you may put a child with compromised lung issues into the hospital.) This posting just isn’t for families with CDH survivors but also anyone out there who has compromised immunities or even those out there that are called “germ phoebes” by some and ridiculed for this.

If there is a way to prevent your child or family member from catching the flu, say having the flu shot, will you then do this? Well, there is a way to cut down the spread of germs and some virus simply by keeping hands clean and not going out into the public when you are symptomatic. Now, many times most bacteria and virus’ are more contagious prior to the onset of symptoms but there is no reason to purposely expose others to illness. So, any ‘germ phoebe’ should site this very reason for being so vigilant. As for the statement, “Well, the more they are exposed, they build up immunities.” Well, if exposed and it kills them, they will never build up immunities! It just doesn’t make rational sense to anyone dealing with a child or anyone who has a condition that has a weakened ability to fight many illnesses out there.

So we have researched here for Hand Sanitizer Dispensers and their prices – so the ‘germ phoebes’ can truly cause talk among their friends and family! Why not? You’re labeled anyway!

Purell® NXTSpace Saver Dispenser - 1000 ml – Price $9.75 (Not Automatic) and their refills are expensive compared to some others listed below.

Purell®TFX Touch Free Dispenser – Nickel Finish - Price $28.25 – again the refills are expensive.

AvantOriginal Instant Hand Sanitizer, Wall Mount Dispenser - $23.99 – this comes with two 1000 ml. refills – A good buy! Shipping is about $5 or so!

This is the link where we compared – so if you have other preferences, please feel free to do your own research: http://www.nextag.com/wall-mount-hand-sanitizer-dispenser/stores-html

We also found these:

Hy5 HandSanitizer Wall-Mt Push button Dispenser $13

And you can go to Amazon and search for dispensers – you’re going to shop for the holidays anyway – so why not add to your order? Click here to see the choices available on Amazon.com.

It appears Amazon may have the best deals overall – if you buy the dispensers they usually offer the refills at a discounted rate!

We just did a quick search and compare here – so if you find a great buy out there – please feel free to comment to this post with the info to share with other “Germ Phobes”!

2012 Faces of CDH Calendar - Released!

2011-11-09T08:19:00.000-05:00

In 2008, the first calendar to feature the faces of congenital diaphragmatic hernia was produced and released and we continue this tradition. Our first calendar featured the "faces" it Polaroid-type frames, we decided to bring back that feature for 2012. Each page also has an inspirational quote.

There are also three sizes, Wall Size, Over sized Wall Size and Vertical with a price range on our Breath of Hope Cafe Press Store site of $15.99, $19.99 and $17.99. If you find or receive Coupon Codes through Cafepress, you must buy the calendars out on the Cafepress Marketplace to use these codes or take advantage of their sale discounts. Sometimes this will reduce the price to less than what is listed in our Cafepress Store. Please feel free to take advantage of these sales and coupon codes!

Breath of Hope only receives $1 commission for each calendar sold, we keep the price down and our commissions down in order to pass the savings on to you all! Thank you for your continued support and to all the families who shared their amazing and beautiful children - Thank you too! Theses faces are what make our calendars so beautiful!

Breath of Hope Presents...

2011-10-21T09:50:00.000-04:00

Are you a wine lover? Do you have friends or family who are? Please consider ours - we have own unique wine label. Supporters enjoy fine, organic wines while supporting their favorite cause. Cheers! Click HERE to go to the site and shop! You can also call 978-297-5477 and if you are having an event and would like to take orders, we can provide information! Email us at boh@breathofhopeinc.com.

Laycee Originals

2011-09-25T19:18:00.000-04:00

We always tell parents each child who is born with congenital diaphragmatic hernia is different, like a snowflake but they to share several traits - one in particular is they are just inspirational. Laycee is truly an Original!

This is from Laycee Originals Facebook Page, there is a link provided at the bottom.

Laycee's lungs did not develop and, in order to save her life, she was immediately placed on ECMO (a heart-lung bypass machine). She remained on ECMO for a total of 21 days. During that time her hernia was repaired and, unfortunately, she suffered a massive stroke destroying a large portion of the left side of her brain.

The prognosis for her neurological outcome was grim. One physician even went so far as to say, "She will just stare at the walls."

Laycee proved to be a fighter. She learned to walk and talk by the age of 3 and, with the help of a wonderful teacher, she learned to read. Her academic skills are limited; however, she has the confidence and the spirit of a lion.

Until approximately 2 years ago, Laycee could not write or draw. She performed most of her school work either on the computer or verbally. One day, she presented her Mom with a picture. It was a face....crude, but a face nonetheless. From that point on, her artistic endeavors took off. She began drawing everyone she knew and, with each portrait, her skills improved. At this time, Laycee has drawn over 300 portraits ~ all the same, yet different. She draws them according to specific information provided by the subject.

Her artwork is currently displayed in medical clinics throughout North Texas (including Wichita Falls, Grapevine, Fort Worth, and Dallas).

Please join us in celebrating this amazing person and her beautiful spirit. Although she has struggled with serious health issues since birth, she sees life through innocent eyes and with a pure soul.

Link to Laycee Originals

Obviously, Laycee is not just "staring at walls" she is making people smile, connecting with them in a way only a heart understands! Laycee - you are awesome!

You can go to the link above to find out how to order a Laycee Original!

2012 Faces of CDH Calendar - Photo Request!

2011-09-15T16:40:00.000-04:00

Each year we request photos for our Faces of CDH Calendar and we are asking again if you would like to submit photos, please do so by October 15, 2011. Our calendars feature these amazing children, both Earthy and Heavenly Angels. Each month also has an inspirational quote.

Please submit your photos to pictures@cdhawareness.org

These calendars make wonderful gifts for under $25.

Thank you!

Will You Help - Raising a Little CDH Awareness!

2011-09-12T14:20:00.001-04:00

Do you see a need in your community to help families who have a CDH child or are expecting a CDH child? Do you see a need, not being met which we can help you with? If you do, please contact us at cdhawareness@breathofhopeinc.com.

Here are examples of needs Breath of Hope helps to meet:

Emily, ^Baylee's^ Mommy, will be sending out Birthday Cards to all families of angels on our mailing list! As many parents of angels know, not everyone remembers their birthdays - it is nice to know we do!

Each year, for the last four years, we have participated in the United Way's Day of Caring, we get volunteers to help us assemble 500 infant hand print kits, most which are donated to the University of Virginia Medical Center's NICU. Every family who has a baby admitted will receive a hand print kit to capture that moment. (Not just CDH families - but all families there!)

Nationwide and Internationally too - we send Expectant and New Parents a kit with our Medically Reviewed publications, hand print kit, receiving blankets and a NICU Baby Book and we add in ribbons and wristbands. Vital information is given to an expectant or new parent of a CDH baby. We also have volunteers all over who provide our publications to hospitals, so they can give them to families expecting or who have a newly born CDH baby.

We always need anyone to write their Governors, Mayors and Congresspeople to request March 31st be Congenital Diaphragmatic Hernia Awareness Day! This is also a great opportunity to make those aware in your community! We provide all materials as guidance and if your city, town or state issue Proclamations or Resolutions - you keep the document! We also encourage you to have events - small are large in your area to bring attention to this often overlooked birth defect.

We will be having the Jazz for Peace Event in Charlottesville, Virginia on March 23, 2012. This is their 10th Anniversary and will coincide with Breath of Hope's Congenital Diaphragmatic Hernia Awareness Day Campaign which will be into it's 5th year! We hope to bring more awareness to congenital diaphragmatic hernia, Breath of Hope and Jazz for Peace in the Charlottesville, Virginia community!

SAVE THE DATE - Week of June 18th, 2012 - our 3rd Annual Congenital Diaphragmatic Hernia Summit will be in Denver, Colorado - this will be the first time on the West Coast! We need volunteers to help if planning to attend! Our goal is to have more families enroll in CDH Research Studies, learn about the amazing hospitals and their doctors and nurses in that area and also meet with others who share their journey with CDH. Each year thus far, we have learned of astonishing information from those doing research on congenital diaphragmatic hernia - many times before it is even published to the public!

Breath of Hope also helps with any Fundraiser to help raise funding for medical research for CDH or which would benefit CDH patients, support for CDH families and help off-set costs of medical expenses for CDH families.

Please contact us at boh@breathofhopeinc.com if you would like to help or you have ideas to help your community!

As always - Thank you!

Tummy Tunnels - Solution for Tube Fed Kids!

2011-09-06T18:51:00.000-04:00

Many times we have parents who wonder what clothing do I get for my infant/toddler, snap bottoms, not easy access to the g-tube or mic buttons for feeding. Tummy Tunnels offers a solution - check them out and please feel free to pass on to all your friends and contacts with kids this can benefit! All you need is an iron and scissors!

Here is their link: Tummy Tunnels

Blooms For Hope Fundraiser

2011-09-02T11:35:00.000-04:00

Labor day weekend is the end of summer and start of fall for most of us. We start thinking of the cool crisp days of autumn and the holidays that follow. We know in February, everyone hopes for an early spring. Through Flower Power Fundraising Inc - if you place orders for your Spring Blooms - 50% of the proceeds will be given to Breath of Hope. With each order they also are sending 10 Tete-a-Tete Daffodils. Fall bulbs are very easy to plant and enjoy in the Spring - it just requires a bit of patience over the winter months. Blooms for Hope Link (Click Here)

Announcing - Baylee's Birthday Blessings

2011-08-27T14:21:00.000-04:00

SPECIAL ANNOUNCEMENT

We have a new Program at Breath of Hope - Baylee's Birthday Blessings

Emily, Baylee's Mommy will be sending out Birthday Cards to all of our families of angels. We never want any of our families to feel like no one remembers. If you are a parent of an angel and on our mailing list, you will receive a card for their birthday. (Please make sure we have an updated address.)

If you would like to be on this list, please feel free to email us at boh@breathofhopeinc.com and put in the subject line - Baylee's Birthday Blessings.

Thank you Emily! (And thank the little spirit behind this too - Baylee!)

Blackcreek Mercantile & Trading Company Donating a Portion of Profits to Breath of Hope

2011-08-17T16:19:00.000-04:00

The wonderful folks at Blackcreek Mercantile & Trading Company are donating a portion of their profits for their small products, such as the above pictured cutting board and oil to Breath of Hope through January 1, 2012.

I ordered a cutting board and oil. I adore the cutting board! It is made lovingly with one solid piece of wood, smooth so when I cut my parsley (picture above) for my famous meatballs, it was a dream to cut them! No edges on this board to contend with and it is a perfect size! These are perfect unique gifts for anyone you know! This board will be something you pass down in your family for generations!

Thank you Blackcreek Mercantile & Trading Company!

The President of the United States: Pass a Resolution for March 31st to be CDH Awareness Day

2011-08-14T21:58:00.001-04:00

For the last 5 years we have diligently promoted Congenital Diaphragmatic Hernia Awareness Day - March 31st. In it's inception, we never expected the overwhelming response we received from parents, family and those who truly knew how devastating CDH is on the family who helped to support our endeavor. Our ultimate goal has been to have one day dedicated to Congenital Diaphragmatic Hernia Awareness, to raise awareness, funds for support and to honor those who continue the fight and remember those brave souls who fought a great fight too.

We realize that each year, writing your Governor and your Mayors for your areas to Proclaim March 31st as Congenital Diaphragmatic Hernia Awareness Day is consistently a constant task. We also know that sometimes in one state, another new family will step up and this gives them the opportunity to receive the Proclamation and the amazing feeling they have when they hold that amazing document! There is a sense of empowerment and achievement! All we ask for is a photo of the document - you keep it!

We also are going to push forward, we want the President of the United States to sign a Perpetual Resolution, we want all of Congress both the US Senate and the House of Representatives to pass the resolution to make March 31st that day. A day we reflect, remember, rejoice, celebrate and make all aware of the amazing families affected by CDH.

We have again created a new Petition which will send an email to your Representatives in Congress and to the President to make this day happen. We are seeking at least 5,000 signatures. We are asking anyone who would like to push this further and personally call their Representatives to contact us for the sample letter and sample Resolution. We also ask anyone who would like to turn their State Turquoise for CDH Awareness Day 2012, to contact us for a Sample Letter and Sample Proclamation to contact us too. Making it personal does help further this cause!

Please feel free to go to this link here at Change.org and sign and you can contact us at cdhawareness@breathofhopeinc.com to get the sample documents.

Thank you for all you do everyday to help educate the public, further awareness of this birth defect. We still have a long way to go but we are making progress!

Have You Had to Explain CDH to a Health Professional?

2011-08-07T19:18:00.000-04:00

We are requesting any family member or caregiver who has had to explain congenital diaphragmatic hernia to a health professional, to please contact us at boh@breathofhopeinc.com with your "testimonial". We are working on grants and intend to use these testimonials to show that not only the general public needs to be made aware of CDH but health professionals too.
It is shocking for parents to take their CDH survivor to an ER and have to explain their child's health history, this could be a matter of life or death. It is unnerving that some parents have had to explain CDH to an ultrasound tech or an OB doctor. This needs to change. It could be a matter of life or death.

If you have such an experience, please contact us so we can make this change!

Thank you!

What to Expect After Bringing a CDH Baby Home - the Basics

2011-07-10T17:35:00.000-04:00

The following is from Breath of Hope's Bringing Home a CDH Baby and is based on the American Acadamy of Pediatrics Postdischarge Follow-up of Infants with Congenital Diaphragmatic Hernia. We also caution parents, all of these children are different and each one brings their own unique situation to the management of their care. This is a generalization, but as with all the books and publications out there, it should act as a guide and as information, not as an individual assessment.

The most common issue these babies may have is gastresophageal reflux/foregut dysmotility – it is reported to occur in 45% to 90% of infants with CDH. Reflux can be treated with medications, and many parents also use some sort of angle bed – raised head after and during the feeds. As these babies grow, they can outgrow reflux. But, if it becomes severe, a surgical procedure called fundolopation may be necessary. This is being done less today than ten years ago due to the advancement of medications.

A high percentage of these children are underweight – in one clinical study over 50% of CDH infants weighed below the 25^th percentile. The most important thing for these babies is to have the nutrition they need for growth – they may need NG Tubes or Gtubes for feeding. Please do not take this personally; we all want oral feeding to happen, but you must remember that it is most important that they grow and thrive as much as possible. Eating could be a challenge. Fighting your infant to take a bottle or nurse to the point that it compromises their growth is not worth the stress. It is more important for your love and cuddling to be felt than for them to feed orally from their parent. If your child is a great oral feeder, that is wonderful. Growth helps these babies and their lungs. Always remember that reflux could cause your child to refuse to eat, too. At high school graduation, no one speaks of how much or how their child ate as an infant or a toddler.

Upper gastrointestinal study, pH probe and/or gastric scintiscan should be considered for all CDH Infants before discharge and at 1-3 months after birth if symptoms, 4-6 months after birth if symptoms, at 9-12 months after birth to be considered for all patients, 15-18 months if symptoms, and annually through age 16 if symptoms.

Esophagoscopy should be considered if there are symptoms at 1-3 months after birth, 4-6 months after birth, at 9-12 months after birth if symptoms or if there are abnormal gastrointestinal evaluations, at 15-18 months after birth, and annually through 16 years if symptoms.

Oral Feeding Evaluations should occur before discharge, 1-3 months after birth, 4-6 months after birth, 9-12 months after birth, 15-18 months after birth, and annually until age five.

Hearing Loss can be a concern and should be evaluated in these infants who survive CDH. It can occur even if they were not treated with ECMO. The cause remains for the most part unknown. It could be several factors including the treatment for respiratory failure and/or combination of medications they may have taken. Almost half of these infants may have some degree of hearing loss. They should be evaluated before discharge and every six months to age three, then annually to age five. Early discovery of any hearing loss will allow early intervention which will help their development.

Developmental Screening Evaluations should occur before discharge, then 1-3 months after birth, 4-6 after birth, 9-12 months after birth, 15-18 months after birth, and then annually to age 5 depending upon their assessments.

Pulmonary function testing should be at 4-6 months after birth if indicated, 15-18 months after birth if indicated, and annually through age 16.

RSV prophylaxis immunizations should be done prior to discharge throughout RSV season during the first 2 years after birth (if evidence of chronic lung disease).

During cold, flu and RSV season, many parents isolate their CDH babies and young children from the general public as well as anyone who may have a virus, cold, or bacterial infection. Hand sanitizer will become a staple in your household. Others may be critical of you as a parent because you will appear to be overly cautious about your child’s exposure to any cold symptom. But, parents of these children will tell you it is better to be overly cautious and appear rude to some than to rush your child to the hospital ER in respiratory distress. A simple cold in CDH babies and young children may develop into pneumonia. Their lungs are already fragile. For a baby without CDH, pneumonia is serious, but for a CDH baby, it can be deadly.

Scoliosis and chest wall deformity screening (physical exam, chest radiograph, and/or computed tomography of the chest) should be in follow-up care at 9-12 months after birth (or sooner if you notice something abnormal) and annually to age 16. When the diaphragm forms in development, so does the spine. It is believed that scoliosis may occur in approximately 17-27% of CDH survivors. It is important to follow up with their care and early intervention is best.

Most parents of CDH infants and children fear reherniation, and it has been reported in 8% to 50% of patients with CDH. One predictor is a large defect that requires a patch to repair. If your infant or young child has increased reflux activity, decreased feeding, increased gagging, or you hear crackling noise in their chest as they breathe – take them to the doctor. These are just a few symptoms that have been reported prior to diagnosis of recurrent diaphragmatic hernias. Monitor and record any changes to relay to the doctor(s). If you truly feel something is not right, insist upon x-rays for your peace of mind. Occasionally there are children who have no symptoms who will require surgery for a recurrent diaphragmatic hernia. The lifetime risk of recurrence is not known. There are many children who have never had an incident, but it best to be overly prepared with information.

Bowel obstructions or adhesions are also something that happen in these children and usually are rapidly symptomatic. The explanation of this is that their intestines are usually herniated. When the initial repair is done, they are pushed back to the lower thorax. In this process and through growth, sometimes problems occur. Be aware of any intense pain your child might have in their stomach area. If accompanied with fever, no bowel movement, or blood in the stool, immediately get them medical attention.

Pectus excavatum – sunken appearance of the sternum can be prevalent in CDH children. Most of the time it is more cosmetic but in some cases the heart is displaced. The Mital valve prolapse could be present and there is a decrease in lung capacity. Surgery might be recommended.

Psychological Issues

Parents have reported that many of their children have sensory issues. They may not like their hands or feet being held – for fear that an IV will be coming next. They associate someone holding their hand or foot with pain to come soon. They may have issues with certain fabrics or textures and touching them. Some have reported to have mild to very severe oral aversions. Sometimes it is anything in their mouths, and sometimes it is just certain textures. There are many therapists now that specialize in children who have had medical issues and the stress they feel after.

If your child has had multiple surgeries and procedures, this could be a huge issue. Age has a whole lot to do with their reactions, but there are things you can do to help your child. One mother trached a Teddy Bear for her son and gave him a toy medical kit to help him. You can also request that any IVs or surgical procedures be done in another room, not their hospital room if they are older. This way they can feel “safe” in their hospital room. Never feel that you should be quiet or that you don’t know your child. If you feel you should say something – SAY IT. You know your child better than anyone. Remind health professionals that yes, your child is their patient but your child is your baby – always. There is a connection between parents and children that the best health care professionals know could help them in the care for their patient.

There are also parents who obtain copies of their child’s medical records. We would recommend not only to have the hard (paper) copies but to also save them on a CD. There are some parents who even provide copies of these CDs to any new doctors that might come into their child’s life. It saves time and also a parent giving the entire history. Not all hospitals are on-line with one another nor or all doctor’s offices and until they are parents must be the source. This is one idea which could make life easier.

Therapies All children who spend any amount of time in the NICU should also be evaluated prior to discharge and shortlysee if they qualify to receive or may need any sort of physical thereapy. Do not be disappointed if your child needs some sort of follow-up and therapy, by getting these services for them early, many times it improves their lives, yours too and avoids or prevents serious issues in the future.

A Humorous but Very Real Warning - CDH survivors are the most defiant, determined and embody the strongest wills as individuals. As parents, you may be at your wits ends during the terrible twos, troublesome threes, and beyond. Enjoy it, that is what gets these children through life!

Breath of Hope, Inc. ©

Post Traumatic Stress Disorder - NICU Parents

2011-06-14T21:26:00.000-04:00

"Experience of a threatening situation that goes beyond the bounds of the individual coping strategies and is accompanied by a sense of helplessness and defenseless abandonment." - Yehuda, 2002

During the Congenital Diaphragmatic Hernia Summit in Philadelphia last June, one of our presentations touched on the simple fact that many parents of children who spend time in the NICU experience Post Traumatic Stress Disorder. The extent of their PTSD depends on the person, their experiences in life, if they have had depression or any other issues prior and also sometimes the length of time.

Sometimes just discussing this with others who understand helps. Many times, months later, friends or family are expecting you to "get over" your experience, but this isn't the case. It is ingrained in your memory, your thoughts and is part of your child's life. It doesn't matter if your child survived or not, it is the fact that you survived and coped.

Here are several articles on the subject:

For Parents on NICU, Trauma May Last by Laurie Tarkin NY Times, August 24, 2009

Acute Stress Disorder Among Parents of Infants in the Neonatal Intensive Care Nursery © 2006 Academy of Psychosomatic Medicine

Parents of NICU Babies Often Experience PTSD - KSMU, Jennifer Moore, May 7, 2010

There are three groups of symtom criteria reqired to assign the diagnoses of PTSD:

Recurrences - re-experiencing the trauma (for example, reoccurring nightmares, flashbacks or something that triggers the traumatic event).
Avoidance - to the point of having a phobia places, people and experiences that remind the sufferer of the event or a general numbing of emotional responses.
Chronic physical signs of hyper arousal, including sleep problems, irritability, anger, poor concentration, blackouts, difficulty remembering things, trouble concentrating, increased tendency and reaction to being startled, hyper vigilance (excessive watchfulness) to threat.

Parents of NICU infants have described nightmares, a smell that will take them back to a moment or even hearing something such as a computer beep that reminds them of the machines in the NICU. These little things can and do take parents back to the NICU. Some parents avoid the hospital their child was treated, even going out of their way in driving patterns if it is on the route they are taking. Many times, because family and friends believe we should be "over it" they numb their emotions to the point they do not have a reaction at all, in an attempt to conform.

We can't count how many parents after their child has been diagnosed, suffer sleeplessness, nightmares, sometimes lashing out for no reason to their partners or others. They all have a hard time concentrating on items due to the simple fact their child's life was in flux. To see your child hooked up to monitors and machines is traumatic. The NICU is a war zone, where there could be death at every turn. The lows are of the lowest lows and occasionally the highs are very high and there is no middle ground.

How do these families cope? Sometimes by joining support groups, talking to friends who will listen and understand and occasionally seeking the help of a therapist.

"The healthy and strong individual is the one who asks for help when he needs it. Whether he's got an abscess on his knee or in his soul." ~Rona Barrett

Jaxson's Jog in Pennsylvania

2011-04-28T17:51:00.000-04:00

Jaxson's Jog is 10K, 5K Run plus a 2.5 Mile Walk in Support of Children with Congenital Diaphragmatic Hernia (CDH). Your registration makes a difference! All proceeds benefit Global CDH. 2011 Race News: 2011 race date: Saturday, May 28 Race day registration: 8 am - 9:15 am Race starts at 9:30 am 2011 race location: North Park Boat House, Allison Park, PA 15101 We are working on some new and exciting race day activities - stay tuned! Interested in sponsoring the 2011 race? Email sarah@jaxsonsjog.com Follow Jaxson's Jog on Facebook: facebook.com/jaxsonsjog

There are several available sponsorships available. Our sponsorship goal is $2000. If just 20 businesses donated $100 we would meet our goal! Let us share the benefits with you today! email sarah@jaxsonsjog.com for more information. Website: http://www.jaxsonsjog.com

Rounds for Ryann - Golf Tournament in Illinois

2011-04-28T17:38:00.000-04:00

Rounds4Ryann is June 4th at iron horse golf course in Tuscola!!!! Email ryannscdhhope@yahoo.com for registration details!! 1 tee time, lunch, and dinner, and lots of great auction items this year!! They also need hole sponsors!! $100 for sponsorship of a hole!

All proceeds go to St. Louis Children's Hospital DHREAMS program, research for Congenital Diaphragmatic Hernia.

For A Breath of Hope - CDH Awareness

2011-04-02T20:48:00.000-04:00

Today, there was a very special event in Virginia. Emma above was born, undiagnosed with CDH on March 31, 2010. Her family paid it forward by having a wonderful event to help benefit Breath of Hope and so we can further help support families and support research efforts for CDH. Click here for the link to the article that ran in The News-Gazette Paper. The reporter, Claudia Schwab was at the event today taking notes - so there may be a follow up article! Thank you to this amazing family.

This picture is of the CHOP SDU decked out in their Turquoise - and from what we have heard - all CDH babies received onsies in the same style! (Thank you Dr. Hedrick!)

And here is Saint Louis Fetal Care staff in their turquoise on March 31st too!

This was just an awesome picture shared!

This is Emma making sure the Proclamation from Beuna Vista is correct! So serious!

If you have pictures of you in turquoise - you would like to share - please feel free to contact us! We love this. We sincerely hope the hospitals out there promoting CDH Awareness Day received significant donations for their research. That is the result we hope Congenital Diaphragmatic Hernia Awareness Day would have - to bring dollars to research to find answers - and to give hope!

Turning Heartbreak Into Action

2011-03-29T20:41:00.000-04:00

Kathleen and James were expecting twin girls and one had congenital diaphragmatic hernia. They relocated to have the twins at The Children's Hospital of Philadelphia. Unfortunately, Allisyn Grace chose wings instead of feet. This hasn't stopped her parents to take action and educate others and now fundraise to further medical research for the hospital that tried to save Allisyn Grace's life.

The Texas Roadhouse in Logan, Utah between 4 PM - 10 PM will be helping, please consider going there if you are in the area on Thursday, March 31st. Click here to read more.

Turquoise Spread to the White House

2011-03-16T21:24:00.000-04:00

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!

In Dire Circumstances, An Extraordinary Option - UofM 2,000th ECMO Patient

2011-03-01T13:57:00.000-05:00

Breath of Hope received this email this morning. We are honored and will keep Victor, his family and as always these amazing health professionals in our thoughts and prayers!

- Breath of Hope

Good morning!

I am attaching a press release we sent out today about little patient Victor Bryan, of Saginaw, Mich. He was born in November with a severe CDH. He was our 2,000th patient to be treated with ECMO. His mom wanted to make sure we sent you the press release as she is a big fan of your site.

Please let us know if we can provide you with anything else in case you'd like to feature his story on your website or share it with your readers and supporters.

Thank you!
Margarita

Margarita Bauza Wagerson
Senior Public Relations Representative
C.S. Mott Children's Hospital & Von Voigtlander Women's Hospital
University of Michigan Health System
734-764-2220 (o)
313-520-2109 (c)
mbauza@umich.edu
http://www.med.umich.edu/

The University of Michigan Health System is celebrating a special milestone. In November, a twin boy named Victor was born with a congenital diaphragmatic hernia, a life-threatening complication. Victor, of Saginaw, became the 2,000th patient treated at the University of Michigan Health System with life-saving technology known as ECMO. ECMO was developed in the 1970s by a U-M surgeon named Robert Bartlett. It has saved more than 30,000 lives world wide. Read more below for Victor's story and to learn more about ECMO.

Thank you for considering for your coverage today.

Here is Victor's story:
http://www.uofmhealth.org/News/ECMO+2000th+patient

Video:
http://www.youtube.com/watch?v=2LLPHZsntPw

Photo slide show:
http://www.flickr.com/photos/umhealthsystem/sets/72157626167021782/show/

For Immediate Release – March 1, 2011

In dire circumstances, an extraordinary option

ECMO team treats its 2,000th patient, a twin boy born with a congenital diaphragmatic hernia

ANN ARBOR, Mich. -- Valerie Munguia-Bryan and Mario Bryan knew for months that one of their twin babies would be born with a devastating congenital defect. But they refused to give up hope.

The couple was referred to the U-M Health System by their hometown physician in Saginaw because of U-M’s expertise in repairing difficult congenital defects and for heart-lung support technology known as Extracorporeal Membrane Oxygenation, or ECMO, which is used to care for

desperately ill patients. Doctors expected the couple’s baby would need to be placed on ECMO to be kept alive from birth and through surgery.

ECMO was developed in the 1970s by U-M surgeon Robert Bartlett, now a professor emeritus. The technology - described by some of Bartletts colleagues as ‘extraordinary’ -- does the work of a patient’s failing heart and lungs for a period of weeks, sometimes months. That’s often long enough for the heart and lungs to rest and recover, increasing the patient’s chance of survival.

The technology has spread worldwide, with more than 40,000 cases treated and more than 24,000 lives saved. ECMO also has the extraordinary legacy of diminishing mortality in conditions where patients used to have no chance of survival.

Manuel and Victor Bryan were born Nov. 1, 2010 at U-M’s C. S. Mott Children’s Hospital. Manuel was born healthy.

As expected, Victor’s lungs were so underdeveloped that he was placed on ECMO immediately following birth. The following day, he was taken to surgery to repair his prenatally diagnosed congenital diaphragmatic hernia - to fashion a new diaphragm and to return his stomach, liver and intestines out of the upper cavity of the chest, where they were pushing up against the heart and lungs. Infants born with a congenital diaphragmatic hernia often have respiratory problems, with the severity varying by case from mild to life-threatening. In Victor’s case, it was life-threatening, so much so that Victor had two runs with ECMO. He is now recovering from a second surgery to close his abdomen.

“He is a fighter,” says his mom Valerie, who chose Victor’s name after her eye was caught by a University of Michigan poster invoking the school’s Hail to the Victors fight song. “He will be Victorious.”

Dr. Ronald Hirschl says that Victor would not be alive today were it not for ECMO technology.

“Victor had almost no diaphragm, he had small lungs, pulmonary hypertension, and blood was not going through his lungs… he needed the ECMO badly,” says Hirschl, M.D., Surgeon-in-Chief and Section Head of Pediatric Surgery at Mott Children’s Hospital and Victor’s surgeon.

“He is a perfect example of a child who wouldn’t be here today were it not for ECMO.

Victor has become a special baby for other reasons. He is the University of Michigan’s 2000th patient to be placed on ECMO.

The milestone is one that was watched closely by the team of doctors, researchers, nurses and administrators who run the ECMO program.

While the numbers worldwide far exceed 2,000, U-M is where the program was anchored, grew, became refined and developed into what it is today. U-M is the place where thousands of doctors and nurses continue to train to bring this technology to their own hospitals. It is at U-M that the

most difficult cases continue to come - not only for U-M’s depth of knowledge in ECMO technology and care of patients, but for life-saving programs that work in conjunction with ECMO, such as Survival Flight, which flies the sickest patients from around the country on

transportable ECMO technology, and the Fetal Diagnosis and Treatment Center, which identifies problems that can be treated from prior to birth and after.

“Victor is a very special baby,” says Bartlett, who retired from clinical practice in 2005 but continues to run the large laboratory where ECMO was developed, now focused on perfecting the technology. “We can’t wait for him to join his brother Manny at home so on.”

Bartlett says the future of ECMO after this 2000th patient milestone is brighter than ever. His lab continues to work on the development of artificial organs and surfaces to replace plastic tubing currently used to eliminate the need for blood thinners, which remains one of the biggest drawbacks of ECMO technology.

That breakthrough is just a few short years away. “We are very close.”

Victor shares a special legacy with the first successful ECMO baby, now an adult woman whose name is Esperanza or Hope in Spanish.

Esperanza’s mom gave birth to her in California 35 years ago. In the country illegally, the frightened mom left her baby orphaned in the California hospital where Bartlett worked at the time. Her life was saved by ECMO. Esperanza was later adopted by a local family. She is now
married with children, living in Missouri.

Hundreds of U-M staff members have worked on the ECMO project for over 30 years. The team has been not-so quietly cheering for Victor as he grows and overcomes hurdles. Nurses readily volunteer to hold his twin brother Manny every time Valerie visits Victor at Mott’s the Neonatal

Intensive Care Unit. They will readily admit they’re in love with the infants.

While Victor still has some hurdles to overcome, Valerie and her family savor the miracle that he is alive today thanks to ECMO technology. Dr. Bartlett who is retired from practice, visits Victor periodically to check on his progress. Valerie couldn't be happier she had a chance to thank Bartlett.

“I just wanted to make sure I could give him a hug - for saving my baby,” says Valerie.

Written by Margarita B. Wagerson

For more information, contact:
Margarita B. Wagerson, mbauza@med.umich.edu or
Mary F. Masson, mfmasson@med.umich.edu
734-764-2220

Perfect Time to Request Congenital Diaphragmatic Hernia Awareness Day!

2011-01-26T16:34:00.000-05:00

This is the perfect time for those of you who wish, to send in your requests to your State Governor or your Mayor to request March 31, 2011 to be Congenital Diaphragmatic Hernia Awareness Day in your community!

Most states request they come no earlier than ninety (90) days prior to the date. If you are interested, please email us at cdhawareness@breathofhopeinc.com - we will send you a Sample Letter, you can edit with your information, sample Proclamations as a guide for your state or city and other documents to help!

You keep the Proclamation - we just ask for a photo!

Thank you!

Breath of Hope's You Tube Account & Videos

2011-01-02T10:47:00.000-05:00

The first one here is "The Reality of Congenital Diaphragmatic Hernia" - not for the squeamish and we warn you there are infants in NICUs hooked up to wires and tubes. The second video is Congenital Diaphragmatic Hernia Awareness Day - a brief history of the Campaign.

Our channel on YouTube is here. Please feel free to subscribe! Thank you!

The Reality of Congenital Diaphragmatic Hernia

2010-12-23T21:00:00.000-05:00

Congenital Diaphragmatic Hernia Awareness Candles

2010-12-15T21:48:00.000-05:00

We are taking pre-orders which will be available after the holidays but in time for Awareness Day - March 31st, 2011. We are still working on the pricing - we hope to keep under $10 each and this will not include shipping. If interested, please email us at elizabeth@breathofhopeinc.com - when available and we know more - we will contact you with all details.

National (International) Children's Memorial Day - Sunday, December 12th

2010-12-11T10:40:00.001-05:00

Sunday, December 12th is International Children's Memorial Day. This campaign was started by Compassionate Friends in order to honor and memorialize all children who were taken too soon from this earth. Just light a candle at 7 PM and extinguish it at 8 PM so the light circles the world from one time zone to another.

Breath of Hope would like to issue a challenge of sorts. If you know someone who has a child die from anything, you may have been at a loss of what to say or do for them - light a candle. You can further this by taking a picture of your candle and send them a message with the picture. Tell them you thought of them and their child. Trust us, this will mean the world to them! Thank you!

Breath of Hope's Holiday Auction for CDH Awareness

2010-12-02T19:53:00.000-05:00

Help us Turn the Corner!

It's time to Bid Now! The Auction is filled with great merchandise, useful services and unique experiences.

You're sure to find something to bid on when you browse through our items.

View All Auction Items

View All 80 Items

2 Tickets to the U2 Concert of Your Choice!

Attend the U2 Concert of Your Choice! Item Includes: Two (2) premium lower level tickets to your choice of U2 concert. Two (2) U2 merchandise packages. Two (2) $50 in-stadium food and beverage credit. Tour Dates 2011 May 21

Value
$900.00

Current Bid
Bid Now!

$50 Restaurant.com Gift Certificate

Great item to have this holiday season as a last minute gift, distant giving or for yourself! Restaurant.com Gift Certificates are redeemable for restaurant gift certificates good at thousands of participating restaurants nationwide or for mercha...

Donated by:
Elizabeth Doyle-propst

Value
$50.00

Current Bid
Bid Now!

$50 Jewelry Gift Certificate to PinkCalyx.com

You are bidding on a $50 Gift Card to Pinkcalyx.com (See Terms and Conditions) PinkCalyx.com is the world?s premier online luxury jewelry retailer offering unique creations for all types of jewelry: bracelets, earrings, necklaces, pendants, and ...

Donated by:
PinkCalyx.com

Value
$50.00

Current Bid
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Bridal Veil Falls By Ansel Adams

Lithograph, 30" X 36"

Value
$250.00

Current Bid
Bid Now!

View All 80 Items

Want to Share the Fun?

All you have to do is Refer A Friend and they can participate too!

Happy Hannukka from Breath of Hope

2010-12-01T18:34:00.000-05:00

Eight days the light continued on its own:
A miracle, they say, but not more so
Than ordinary lives of flesh and bone,
Consuming wicks burned ashen long ago....
~Nicholas Gordon

Breath of Hope - Member Organization of NORD

2010-11-23T19:09:00.000-05:00

The Board of Directors of NORD has accepted Breath of Hope as a Member Organization. NORD is a unique federation of organizations that share a common interest in helping people with rare diseases. These organizations have learned that they speak with a louder voice when they work together, even though their individual missions may differ in specific details.

NORD member organizations share the benefit of representation in Washington, DC, through the efforts of NORD's Vice President for Public Policy in its Washington office. They also receive frequent briefings from NORD on political and medical news, as well as guidance on topics related to accomplishing their organizational goals.

To view a list of current organization members with direct links to their websites, click here. (We just received notification via email today and are not currently listed but will be soon.)

Breath of Hope's Holiday Auction for CDH Awareness

2010-11-20T20:28:00.000-05:00

Starting on Friday, November 26th through December 10 Breath of Hope will be holding an online auction Fundraiser through Bidding for Good.

Items up for auction include U2 Tickets to a concert of your choice, Lady Gaga Tickets to a concert of choice, Restaurant.com Gift Certificates (wonderful item to have on hand to give as a gift or use yourself). Also up for action will be a Super Bowl Package, March Madness Final Four Package, A Trip for 2 for the Country Music Awards next November, Hot Air Balloon Rides Package and Top Gun - Fighter Pilot Experience for One Package. There are also many Art items, sports collectibles and more being added next week!

Proceeds to benefit our organization during tough economic times. We have not cut programs but it has been a very lean year. We are also offering gift cards to top referrals - so please feel free to log in and refer your friends and family!

Click here to preview, donate or sponsor: Breath of Hope's Holiday Auction for CDH Awareness

We would like to thank Berry Web Designs for sponsorship!

Thank you!

Congenital Diaphragmatic Hernia Documented for 300 Years?

2010-11-13T18:38:00.000-05:00

Congenital Diaphragmatic Hernia has been recorded for over 300 years, but no one has ever heard of it, unless they encounter it.

Congenital diaphragmatic hernia (CDH) was first described in 1679 by Lazarus Riverius who incidentally noted a CDH on a postmortem examination in a 24 year old.

Citation: The CDH study group and advances in the clinical care of the patient with congenital diaphragmatic hernia Nora M Doyle, Kevin P Lally Seminars in Perinatology - June 2004 (Vol. 28, Issue 3, Pages 174-184, DOI: 10.1053/j.semperi.2004.03.009)

In 1701, Sir Charles Holt described the classical clinical and postmortem findings of an infant with CDH in philosophical transactions of the Royal Society of London.

Citation: Weblink here

Author: Daniel S Schwartz, MD, FACS, Assistant Clinical Professor of Cardiothoracic Surgery, Mount Sinai School of Medicine; Chief of Thoracic Surgery, Huntington Hospital
Coauthor(s): Jason M Johnson, DO, General and Laparoscopic Surgeon, Department of General Surgery, William Beaumont Army Medical Center; Sidney R Steinberg, MD, FACS, Program Director, Department of General Surgery, Spartanburg Regional Healthcare System; Consulting Surgeon, Department of Surgery, WG Hefner Veterans Affairs Medical Center Contributor Information and Disclosures

Updated: Jun 12, 2009

And:

In 1848, Victor Alexander Bochdalek, a professor of anatomy in Prague described both right and left posterolateral CDH. To this day, CDH commonly is referred to as a Bochdalek hernia in honor of Victor Bochdalek's contribution to this field. Citation: Weblink here

Not to dispute the findings and severe health crisis which HIV and AIDS has presented in this world, but in the last 20 years, the advances of care and maintaining health for those affected by HIV has evolved not to be a death sentence. First reported in the 1980s in the United States Citation Here: WebLink here

Congenital Diaphragmatic Hernia (CDH) has been reported, studied, evaluated, researched for the last 300 years and still to about 50% of those diagnosed overall it is a death sentence? A death sentence before their 1st birthday.

Everyone is aware of HIV, even those who have never directly encountered it. Not everyone is aware of CDH, only those who have directly encountered it. This needs to change.

The only way this can change is if we make our Government officials and the general public aware that CDH has been reported, diagnosed and treated for 300 years but no one is aware. If you would like to make your local, state or federal Representatives aware, educate the general public, take a hour of your time and write them. Request a sample letter and proclamation/resolution by contacting us at cdhawareness@breathofhopeinc.com, we will gladly send you the documents to do this.

Only when they are aware, when the general public becomes more aware will there be more research in order to bring the survival rates higher. When more are aware they will fund medical research for this birth defect. More will realize that survivors of CDH need specialized care and therapies early in order for these children to maintain health. Until we start with the first step, no one will listen. The first step is our elected officials and the general public.

It just is not acceptable for 300 years, CDH has been documented and the survival rates are still over all at 50%.

"Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has." - Margaret Mead

2011 Faces of CDH Calendar & Breath of Hope's New Logo

2010-10-31T15:26:00.000-04:00

The 2011 Faces of CDH Calendar is now available on Cafepress. If you go to this link - please consider going to Goodsearch - Good Shopping - a percent of your sale will go to Breath of Hope! The calendar comes in two sizes 17X11 for $19.99 and 11 X 8.5 for $16.99, both make excellent gifts!

Also today is the LAST DAY for FREE Shipping on all orders over $40.00 - the coupon code is NEWSHIP40

Click here to go directly to the Breath of Hope Cafepress Site - if you shop from Cafepress the prices are slightly more!

We are always honored by all the families who send in the photos of these amazing children. It truly is their faces that make these calendars so perfect! Thank you!

Each Day 5 Infants are Diagnosed with CDH

2010-10-27T20:08:00.000-04:00

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 fifty (150) 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.
4. If you are looking for a cause to help with – we would welcome your assistance!
5. Wear turquoise on March 31, 2010 for Congenital Diaphragmatic Hernia Awareness Day! When someone asks what it's for – tell them! Or wear it every day! (Many of us do!)

written entirely by Elizabeth Doyle-Propst 10/27/2007
_____________________

Copyrighted - Breath of Hope Inc. - if you wish to use this - you can - just site the source!

Wave of Light - Pregnancy and Infant Loss Awareness Day - October 15th

2010-10-14T19:43:00.000-04:00

On October 15th it is International Pregnancy and Infant Loss Awareness Day. On this day, please light a candle at 7 PM in your time zone and you can extinguish it at 8 PM. This will create a continuous wave of light around the world for the little angels to see from heaven.

For more information - click here

2nd Annual Cadan's Halloween Carnival - CDH Research Benefit!

2010-10-12T21:56:00.000-04:00

If you are in the Illinois area - this is an awesome family event! All proceeds raised will go to Saint Louis Children's Hospital to benefit research to benefit congenital diaphragmatic hernia.

More details are on Facebook - click here

Thank you!

Faces of CDH Calendar for 2011

2010-10-01T20:26:00.000-04:00

We are taking photos for the Faces of CDH Awareness Calendar for 2011, this is the fourth year we have produced this calendar. Please send pictures to pictures@cdhawareness.org by October 15, we will provide a consent form.

Below are samples from our calendar this year. These make great gifts for under $20 and are wonderful to give friends, family and doctors or your favorite nurse.

Thomas Jefferson Area United Way Day of Caring - Giving that Gives Back

2010-09-25T17:19:00.000-04:00

Since 2007, Breath of Hope has participated in the Thomas Jefferson Area United Way's Laurence Richardson's Day of Caring. Each year, in September, the Central Virginia's United Way coordinates hundreds of projects for other nonprofits and schools in the area and provides thousands of volunteers to help. It is the time of year, other nonprofits and schools look forward to receiving volunteers to complete projects they otherwise could not have done without the human power required.

In the summer or 2007, I heard a radio advertisement requesting nonprofit organizations contact our United Way to obtain the volunteers needed for projects for one day. We knew there was a project that we could untilize volunteers but we also wanted a project which would give back to the community. Breath of Hope had been supplied infant hand print kits for our Expectant/New Parent Packages by individual Board Members and myself. We had found a wholesaler which we could purchase these kits for approximately $5 each. We knew we could assemble them using containers and paris of plaster for less than $5 each. In fact, the total cost per kit with labels, ziplock bags and instructions are at a cost of about $1.25 each, far less than the cost we were paying.

We also had all our printed materials reviewed and edited by the University of Virginia's NICU staff lead by Robert Sinkin, MD and felt we should give back to them. On average, 450 infants are admitted each and every year at the NICU there. Today, a hand print kit is supplied to each and every family who has their baby admitted there. The remaining are used in Breath of Hope's packages and we have had extra to help send to Project Sweet Peas Projects around the country.

This year we had an amazing group of volunteers from CFA Institute and Banana Republic of Barracks Road come and learn about congenital diaphragmatic hernia, Breath of Hope and help us assemble another 500 hand print kits. And they see the results which we provide the UVA NICU. We know that families throughout the area benefit from these simple kits. We also know the staff at UVA's NICU enjoy giving this small token to families in order to capture their child's first days here on earth.

We thank the volunteers, the Thomas Jefferson Area's United Way (Shaele Wood should receive a metal for her coordination each and every year), PRA International for providing the space to complete this project and the UVA NICU for the inspiration, help and assistance to complete this project for three years.

Next year will be the 20th year of the United Way Day of Caring here in this area. Twenty years of helping other nonprofits and organizations have volunteers provided so they can help others. By giving, you give and get and it is returned,

We would also like to promote a wonderful Printer we used this year - their service and quality are amazing! With very short notice we were able to get our labels and they went over and above the call of duty! Lepin' Lizard Labels - order your labels from them - they are less than any others we have used and their service is amazing!

Two Days Left - Bidding Ends September 15th at 11 PM ET

2010-09-13T19:56:00.000-04:00

ONLY 2 Days Left to Bid!!!

The Breath of Hope, Inc Auction closes on September 15, 2010 at 11:00 PM EDT.

If you've got your heart set on a special item... you still have time to win!

Check Out These Great Buys...
You can still bid on any of the special items in our auction right up to the final seconds of this exciting event. Every tick of the clock brings us closer to the finish line. This may be your last chance to win that special item or to grab a great bargain. So don't miss out... BID NOW!

Spread the Word!
Remind your friends the end is almost here! Just Refer your Friends so they have the chance to offer their support and get some great last-minute deals.
Don't Forget: Every bid supports the work we do at Breath of Hope, Inc!

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Items still available!

View All 73 Items

Katherine in Dusk

The Katharine Book Bag is about simplicity. Whether you are carrying a romance novel or a school book, this bag will let you do it in style. Its reversible sleek design allows you to get two looks for the price of one. The zippered pocket allows ...

Donated by:
Jennifer Zaranis

Value
$36.00

Current Bid
$12.00

Brew Central 14-Cup Coffeemaker

¿ 14-cup coffeemaker ¿ Fully automatic with 24-hour programmability for "wake-up" coffee ¿ Brew-pause; coffee-ready indicator; auto shut-off; simple push-button controls ¿ Gold Tone filter, charcoal water filter, and instruction book included ¿ Me...

Value
$185.00

Current Bid
Bid Now!

Viva Las Vegas!, Las Vegas

A Trip for Two to Las Vegas, Nevada for Four Days & Three Nights at the Luxor with Economy Class Air, Including Shared Round Trip Airport Transfers and an Evening Helicopter Ride over the Strip Come revel is the glamour and glitz of Las Vegas! Fr...

Value
$2,600.00

Current Bid
Bid Now!

Donate a Mile in the NYC Marathon 2010

Each runner is required to raise $2,500 in order to participate, this means that each mile they run will be worth $100. Donate for one mile - all proceeds raised will go to the Dhreams Research Program at Columbia University to further genetic re...

Donated by:
Breath of Hope

Value
$100.00

Current Bid
View Item

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Guest Book

Refer Friends

Breath of Hope, Inc

PO Box 6627 Charlottesville, VA 22901
Ph: 888-264-2340
http://www.breathofhopeinc.com/

In Remembrance...

2010-09-11T09:29:00.000-04:00

Show Us Your Support!

2010-08-27T18:53:00.000-04:00

Beginning on September 1, 2010, Breath of Hope, Inc will be holding an online auction to raise much needed funds.

We need your support!

We're asking you to participate in one of the following ways...

How You Can Help:

Donate.
We need Auction items to add to our auction. If you have valuable merchandise, rare collectibles, business or personal services or access to unique events, we need your contribution today. Click here to Donate.

Be a Sponsor.
Contact us at breathofhopeinc@biddingforgood.org or 888-264-2340 to take advantage of promotional opportunities for your business or to pledge your individual support.

Tell Your Friends.
Do you know someone who would be interested in supporting our cause? Please share the news of the online auction with your friends so they can be part of the excitement. Refer a Friend to our auction so they can get involved.

Thank you in advance for your continued support! We look forward to your item donation and online bids!

View All Auction Items

PRESS RELEASE: 2010 Breath of Hope Scholaships Awards Announced

2010-08-20T20:21:00.000-04:00

For More Information Contact:
Breath of Hope, Inc. 1-888-264-2340
Website: www.breathofhopeinc.com

BREATH OF HOPE, INCORPORATED SCHOLARSHIP AWARDS
ANNOUNCEMENT

Breath of Hope, Inc. (BoH) a 501 c 3 nonprofit public charity is pleased to announce the following
scholarship awards to the following individuals:

Devin Dye of LeRoy, West Virginia is the recipient of the Miracle Scholarship which will be applied to his education at West Virginia University
Lauren M. Real of San Carlos, California is the recipient of the Miracle Scholarship which will be applied to her education at California State University
Erin McInnis of Madison, Mississippi is the of the Hope Scholarship which will be applied to her education at Harding University
Jacob Boyd Womack of Madison, Mississippi is the recipient of Beyond Measure Scholarship which will be applied to his education at Mississippi University
Alex Mourtsen of Flagstaff, Arizona is the recipient of the Miracle Scholarship which will be sent to further his education at Northern Arizona University

Breath of Hope would also like to thank GMAC Financial who through their grant made these scholarship awards possible for these amazing individuals.

To learn more about Breath of Hope, please visit: www.breathofhopeinc.com call them toll-free at 1-888-264-2340.

August 19 - A Day of Hope...

2010-08-12T20:42:00.000-04:00

Many people don't want to talk about an infant that died. It is sad thing, but for the parents, grandparents and their sisters and brothers they do remember the joy, the hope and the beauty of that child who was theirs. These are miracles too and no one should be ashamed or embarrassed to talk of these amazing miracles who blessed this world for a short time.

On August 19 - it is a day of Hope and a day to remember and speak of these amazing angels.

Please feel free to visit here and be proud to display these beautiful photos in honor of these children and their families.

Make Congenital Diaphragmatic Hernia Awareness Day 2011 in Your Area!

2010-07-21T18:45:00.000-04:00

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!

Requesting Funds for Congenital Diaphragmatic Hernia Research & It Will Raise Awareness Too!

2010-07-07T19:12:00.000-04:00

One of the most amazing people we know, Shannon, has taken on running in the New York City Marathon on November 7, 2010. Twenty-six miles representing congenital diaphragmatic hernia awareness through the City of New York. This marathon is the marathon that all want to run. They say crossing that finish line in Central Park is like no other accomplishment they ever experienced.

The New York City Marathon also attracts runners from all over the world, media from all over the world and spectators! Every cent raised by the runners on TEAM GCDH NYC Marathon will go to Dhreams - Diaphragmatic Hernia Research & Exploration. The runners are doing this for these children, families and to prove something to themselves - that they can reach from within and accomplish this without quiting - after all, these children are not given that choice.

Your donations are tax-deductible and every cent raised helps! You can donate at the link above for TEAM GCDH NYC Marathon to any runner or any of the organizations and indicate that the funds are to the NYC Marathon for CDH Research!

Shannon - thank you - and all the other runners too! Global CDH - thank you for this opportunity and may we all help raise some awareness and some funds for congenital diaphragmatic hernia medical research!

July 10th - Zumba for Congenital Diaphragmatic Hernia Awareness!

2010-07-06T20:09:00.000-04:00

Thank you Sara (Joey's Mom) for organizing this event!

Quote about Pediatric Medicine...

2010-06-25T17:52:00.000-04:00

"These are tiny humans. These are children. They believe in magic, they play pretend, there is fairy dust in their IV bags and they cross their fingers and they make wishes and that makes them more resilient than adults. They recover faster, survive worse. they believe. In Peds, we have miracles and magic and in Peds, anything is possible." ~ Grey's Anatomy

The "Doers" of Congenital Diaphragmatic Hernia Awareness

2010-06-22T00:24:00.000-04:00

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.

Wishes all Fathers a Happy Father's Day!

2010-06-19T16:26:00.000-04:00

When I was a boy of fourteen, my father was so ignorant I could hardly stand to have the old man around. But when I got to be twenty-one, I was astonished at how much he had learned in seven years. ~Mark Twain, "Old Times on the Mississippi" Atlantic Monthly, 1874

Dad, you're someone to look up to no matter how tall I've grown. ~Author Unknown

My father used to play with my brother and me in the yard. Mother would come out and say, "You're tearing up the grass." "We're not raising grass," Dad would reply. "We're raising boys." ~Harmon Killebrew

He didn't tell me how to live; he lived, and let me watch him do it. ~Clarence Budington Kelland

Breath of Hope is listed as a "Circle of Care" Donor

2010-06-16T19:05:00.000-04:00

From Saint Louis Children's Hospital 2009 Annual Report. Please view the middle row - Breath of Hope is listed as a "Circle of Care" Donor.

Breath of Hope is an organization that supports Medical Research which will assist in furthering the care of Congenital Diaphragmatic Hernia. We are not medical researchers, we are parents who run a very efficient nonprofit organization. Less than 18% of all revenue is used for Administrative costs. We continue to help support Medical Research and put funds to work to do this.

Breath of Hope Named to a List of Top-Rated Nonprofit Organizations

2010-06-02T19:50:00.000-04:00

June 2, 2010

Breath of Hope has been named to a new list of top-rated nonprofits by GreatNonprofits, the leading provider of user reviews for nonprofit organizations.

The top-rated Women'e Empowerment nonprofits list is composed of organizations that have received at least ten positive reviews from stakeholders, such as volunteers, donors, or clients. Breath of Hope has received seventeen of reviews to date.

The reviews were posted as part of the Women's Empowerment campaign conducted by GreatNonprofits, in partnership with Guidestar and a coalition of nonprofit organizations. “We are gratified to be able to honor Breath of Hope for its work on congenital diaphragmatic hernia issues,” said Perla Ni, CEO of GreatNonprofits. “They deserve to be recognized for the support they have from their community of stakeholders.”

The entire list of top-rated Women's nonprofits is available at http://greatnonprofits.org/reviews/issues/women/_. This list can be used to find great nonprofits to support with your giving, volunteering, and patronage.

About the Campaign

The campaign was hosted by GreatNonprofits, Guidestar, and a coalition of other nonprofit organizations.
The success of the campaign and the diversity of organizations reviewed reflect the core of GreatNonprofits’ mission to bring visibility, transparency, and accountability to the sector and allow nonprofits to engage with their community in a different way.

All reviews appear on GreatNonprofits.org as well as GuideStar.org, the premiere source for donor research on nonprofits. Nonprofits with 10 or more positive reviews during the campaign are included on the GreatNonprofits Top-Rated Women's Nonprofits list.

Media Contact:
Elizabeth Doyle-Propst
elizabeth@breathofhopeinc.com
888-264-2340

Memorial Day 2010

2010-05-31T01:45:00.000-04:00

For love of country they accepted death... ~James A. Garfield

Death leaves a heartache no one can heal, love leaves a memory no one can steal. ~From a headstone in Ireland

The brave die never, though they sleep in dust:
Their courage nerves a thousand living men.
~Minot J. Savage

And I'm proud to be an American,
where at least I know I'm free.
And I won't forget the men who died,
who gave that right to me.
~Lee Greenwood

Please remember this Memorial Day weekend, with the BBQs, Pool Openings and celebrations - is also a time to remember all those who gave their lives for the freedom we enjoy every day. Freedom comes with a price and many sacrificed their lives. Many families endure separation and many of them need to be honored and respected for their service.

Zumba Fitness For Congenital Diaphragmatic Hernia Awareness!

2010-05-24T19:21:00.001-04:00

Gigi Hill - Fundraiser for Entire Month of June

2010-05-24T18:58:00.000-04:00

One of our fantastic Moms is doing a fundraiser for Breath of Hope for the entire month of June. Fifty percent of all sales will go to Breath of Hope. Great gifts for women - bridal showers, birthdays or just because - or maybe a new spring bag for yourself! Please go here to purchase! If you would like to host a party please feel free to contact Jennifer at jenniferzaranis@gmail.com

Jaxson's Jog - Fundraiser in Pennsylvania for CDH

2010-05-19T18:58:00.000-04:00

Jaxson's Jog is a 10K & 5K Run plus a 2.5 Mile Walk in Support of Children with Congenital Diaphragmatic Hernia (CDH). Your registration makes a difference! All proceeds benefit Global CDH.

Summary of Race Details:

REGISTER online today, click here (note: registration says 1 mile walk, but it is 2 miles)
Race date: Saturday, May 22, 2010
Race location: North Park Boat House, Allison Park, PA 15101
Race day registration from 7:30 am - 9:30 am
10K and 5K Race begins at 10 am; walkers follow
Registration Fee: $20 for adult runners/walkers, $10 for youth (18 or younger)
Course Info: For 5K course, click here; for 10K course click here
Hotel: Holiday Inn Pitt North is offering a special rate of $79 - click here for details
Stick around for the post-race festivities - awards and Chinese raffle

Follow Jaxson's Jog on Facebook: facebook.com/jaxsonsjog
To make an online donation to Global CDH in the name of Jaxson's Jog, click here.
There are lots of ways to help – sponsor or make an individual donation, register as an individual or a team to run/walk, or make an in-kind donation of food or gift for the Chinese raffle. I hope you will strongly consider supporting the families and children with Congenital Diaphragmatic Hernia by participating in Jaxson’s Jog!

Happy Birthday Jaxson! We hope your day is wonderful!

2010 Congenital Diaphragmatic Hernia Summit

2010-05-17T20:58:00.002-04:00

Will be in Philadelphia, Pennsylvania from June 23 - June 27. For more details please go to this link with the most complete and up-to-date information - LINK

We want to thank Peace Frogs Travel / Outfitters, Chief Frog, Julie Arbelaez for her tremendous help with the hotel rooms, conference rooms and breakfast(s). If you have travel needs, please consider them - here is the link. http://www.peacefrogstravel.com/

Happy Mother's Day

2010-05-09T10:37:00.000-04:00

To all mothers - mother's of these amazing children - both the angels and the earthly angels, grandmothers and great-grandmothers out there too!

Being a full-time mother is one of the highest salaried jobs... since the payment is pure love. ~Mildred B. Vermont

Mothers hold their children's hands for a short while, but their hearts forever. ~Author Unknown

Mother love is the fuel that enables a normal human being to do the impossible. ~Marion C. Garretty, quoted in A Little Spoonful of Chicken Soup for the Mother's Soul

A mother's love is patient and forgiving when all others are forsaking, it never fails or falters, even though the heart is breaking ~ Helen Rice

A mother is someone who dreams great dreams for you, but then she lets you chase the dreams you have for yourself and loves you just the same. ~ Unknown

The moment a child is born, the mother is also born. She never existed before. The woman existed, but the mother, never. A mother is something absolutely new. ~ Rajneesh

Congenital Diaphragmatic Hernia Summit - Philadelphia, PA

2010-05-07T22:06:00.002-04:00

(Organizations in Alphabetical Order – more are welcome!)
Breath of Hope, The Children’s Hospital of Philadelphia, Global CDH,
Parker Reese Foundation, Project Sweet Pea

June 23 -24 2010 – Sheraton Hotel, Philadelphia, PA

To reserve your hotel room at a special rate of $129.00/night ($100 discount)
(Copy and paste the following link into a web browser)
http://www.starwoodmeeting.com/StarGroupsWeb/res?id=1004139524&key=C2

You can also call the Sheraton at 1-888-627-7071, please mention the Breath of Hope Block (50 rooms)

The Center for Fetal Diagnosis and Treatment at The Children's Hospital of Philadelphia coordinating Speakers for June 24 and/or 25

Dhreams Research Presentation – Julia Wynn

Presentation by Willie Skaggs, Councilor – How to best deal with friends and Family – who just don’t understand - open session for families to get ideas and strategies

June 23 – would be introductions … The Organizations all represented will have time to do presentations.

June 24 – (currently open)

June 25 – 10 AM – Dhreams – Presentation and description of Genetics and their study. There also will be forms there and possibly a certified phlebotomist to take blood samples for those who would like to participate.

June 26 – Visit to the Philly Zoo - the oldest Zoo in the United States – we are working on a group/discounted rate we will need a RSVP in order to reserve this at discounted rates and a possibility of having access to more attractions – such as a Swan Boat Ride or Pony Rides! boh@breathofhopeinc.com to let us know if you want to attend!

June 27 – The Children's Hospital of Philadelphia's Center for Fetal Diagnosis and Treatment's Fetal Family Reunion - or those traveling and who want to take advantage of the room rates through the Breath of Hope Block – please feel free! We will provide water and drinks through the conference sessions and are hoping to provide breakfast and possibly a dinner or lunch.

Nurses Week - May 6 - 12, 2010

2010-05-06T17:36:00.000-04:00

Let nurses know how important they are to us!

Alex had a Lemonade Stand - Breath of Hope wants a Birthday Bash

2010-05-01T00:13:00.001-04:00

Spread a little awareness every day and why not have a bake sale? Or even a cookout and collect donations? If you work - bring goodies in and accept donations in exchange. Breath of Hope's Birthday is May 17th - all fundraisers are appreciated and to further this incentive a gift certificate will be awarded to the person who raises the most funding by July 31, 2010. The proceeds collected - 50% will go to the programs and services Breath of Hope provides and 50% will go towards medical research. If you have questions, need ideas - please feel free to contact us at cdhawareness@breathofhopeinc.com

WHAT IS IT LIKE TO HAVE A BABY WITH CONGENITAL DIAPHRAGMATIC HERNIA?

2010-04-28T08:08:00.001-04:00

Imagine that you and your partner are expecting a baby. The thrill of the whole thought – another little being. The whole thing is a bit overwhelming and exciting. About the time many are diagnosed, is the 20 week ultrasound. Most couples go to the doctor excited to perhaps find out the sex of the baby and/or just to get a glimpse of this little one before they are born. Whose mouth and nose does this little one have? No one expects to be told their child has something wrong.

You are in a darkened room in order to see the ultrasound monitor and the tech is actually measuring the size of the head, bones and checking to see the organs. Then they see that something isn’t right. It is hard to not disclose this to the couple who is excited to see their baby, the hands the feet the nose. In that darkened room or perhaps after you are led to an office after the ultrasound, a health professional will then inform you that your unborn child has a birth defect called congenital diaphragmatic hernia. The survival rates are approximately 50 to 60% and they must tell you that the treatments they endure to save their lives may cause lifetime issues. They also have to tell you that congenital diaphragmatic hernia itself because the child’s organs did not form correctly in development may have lifetime issues.

You are then told there are options. Fetal surgery may be an option but depending upon where you live and the availability of surgeons who specialize in this, it could not be a financially feasible one. It also depends upon the mother’s overall health and the severity of the diaphragmatic hernia, so you must qualify to have this option available to you too. Your insurance coverage may not cover such a procedure. It is highly experimental even today. One day it may not be. You are also told that you should have this infant, if you continue this pregnancy at a level 3 or higher NICU at a Medical Center that has had experience, even with the fetal surgery you would need this too. They may require ECMO, a heart lung bypass in order to save their lives. To imagine your unborn child hooked up to a heart lung bypass? It is overwhelming. This isn’t supposed to happen.

You will also be given an option to terminate the pregnancy. You just passed the 12 week point where many couples start to breathe easier because you are past the crucial point of miscarriage in the first trimester. You are not supposed to be making life and death decisions for your child. You are supposed to be planning the nursery, picking out clothing and the only worry will be if you truly think you are up to being a mother or a father. Those worries are enough in themselves.

Now you are given options if you were prediagnosed prior to birth. You must make these decisions that will not only affect your lives, but your whole family. You will wonder if your choice of hospitals is good and question if you should go to another. None of the choices are easy. You will also be asked to undergo an amniocentesis to rule out any other abnormality with this unborn child. Many times there are none. Sometimes there are other issues.

Only other parents who have faced this understand the unexplainable feelings, the emotions that go from fear, to devastation to determination. Only other parents who have been there and done that can relate to this. Many of us were asked, “How can you?” We just do. We have truly little choice in the matter.

If you choose to interrupt this pregnancy, all the experts have told you based upon countless tests that your unborn child’s chances are less than 50%, you must endure the stigma. You wanted this baby and you chose not to have them suffer. It is not a selfish act but a selfless one. Some will state if you didn’t go full-term this child doesn’t count – so not true. You will also change because of this experience. Your child will never know the pain and will always be in your hearts.

If you choose continue the pregnancy and hope and pray for the best you will also have doubts and wonder if you can endure seeing your small infant go through surgery, recover and endure. If you are the mother, you will have this constant reminder moving and kicking within you. If you are the father, each time you see your partner, you will have this reminder. The thoughts of what you both will have to endure for your child and what your child will endure will not be far from either of you.

Then there are those couples who were expecting a healthy baby and their child is born and goes into repertory distress. They whisk the baby away and start intubation and assessing the condition of the infant. You may not hear anything for hours. Not knowing what is happening to your child, to this baby you have a nursery prepared for, a life planned out for and now they are taken from you. The doctors will then come to you and tell you of this birth defect which has a 50% mortality rate. Your child may be treated in the hospital you delivered or many times may have to be transported to another for treatment. You are in shock. What in the heck is a congenital diaphragmatic hernia? How did that happen? Why didn’t they see it before? When can I see my child? When can I hold them? Those that had the diagnoses prior to birth at least know of the protocols and procedures that health care institutions do to attempt to save the lives of these babies.

Both will sit by the bedside and pray, hope and wonder what is next? You face the unknown, the lack of control, the overwhelming feeling of parents just to pick their child up who is suffering and ill cannot be acted upon. This isn’t supposed to happen this way! Why your child? No one can give answers to that question. You go from watching the monitors to not watching the monitors to asking if they have had a good day or a good blood gas for the past hour. Sometimes you cling to just a good minute.

If you are blessed enough to have your child endure surgery, possibly ECMO and recover from both then the next hurdles are feedings and weaning the painkilling drugs they have been on since birth. This is a slow process. It takes time and patience. Many of these children due to the organs affected may have gastrointestinal reflux and due to the tubes down their throats oral aversions. You wonder how you are going to take care of this once fragile infant at home. You are warned of their lung condition being fragile, that they may not have the immunities other children have and must be guarded against a society full of germs. Your best friend will be anti-bacterial soap and hand sanitizers. (Next to an abundant supply of burp cloths for the reflux.)

And if you are faced with letting them go, allowing them to earn their wings, either by their choice or after being told that everything that could be done has been and there is nothing left to do. That is the worst loss, but each and every parent who has had ever to let their child go in this way will tell you, “We just knew it was time”. The most unselfish act in the world is to tell your loved one, “It is okay to go.” They will be out of pain, not have to endure any more but that is when your pain will immeasurably increase.

It takes courage, faith, strength you never thought you could have to endure having a child with CDH. You will be the most devastated you ever have been, you will be more exhausted both physically and emotionally than you ever have been before. You will also know that no matter what life throws at you now, it is small compared to what you have endured.

Barnes-Jewish, St. Louis Children’s Hospital and Washington University Launch Fetal Care Center to Treat High-Risk Mothers and Infants

2010-04-23T01:19:00.000-04:00

See the full article here.

Breath of Hope's Earth Day Tote - Logo

2010-04-22T07:36:00.000-04:00

Can be ordered here.

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

2010-04-20T08:22:00.000-04:00

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.

Peyton's Promise - May 15 - 5k Run/2k Walk - Pennsylvania

2010-04-11T15:39:00.001-04:00

5K Run / 2K Walk

Saturday, May 15 - Sea Isle City

all profits donated to

Children's Hospital of Philadelphia to benefit CDH

Please click here to go to the website and register or donate.

Please click here to read a wonderful article about this event - 2nd year!

Breath of Hope's Expectant - New Parent Package

2010-04-09T21:51:00.000-04:00

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.

Robert Wood Johnson Foundation Award Winner to Research to benefit Congenital Diaphragmatic Hernia

2010-04-08T02:10:00.000-04:00

Sean E. McLean, MD, an assistant professor at UNC, was selected as a 2010-2014 Harold Amos Medical Faculty Development Program scholar. The Harold Amos Medical Faculty Development Program is a national program of the Robert Wood Johnson Foundation.

Dr. McLean plans to use the four year grant to support labratory research on how smooth muscle cell phenotypes contribute to pulmonary hypertension utilizing mouse models for congenital diaphragmatic hernia (CDH). Please read here for the full article. Thank you Jean for this great find!

$5,000 GoodSearch Giveaway - Three Days Only!

2010-04-06T00:01:00.000-04:00

GoodSearch will donate a $1 for every toolbar that is downloaded between April 6th at 9am EST and April 9th at 9am EST up to $5,000!! Please download the toolbar right now by following this link - (see below for instructions on how to create a link to your customized toolbar download page)

Our new toolbar is free to download and allows you to raise money for our cause CONGENITAL DIAPHRAGMATIC HERNIA AWARENESS---Every breath they take is our ~BREATH OF HOPE~ every time you search or shop online! Once added to IE or Firefox, each time you shop at more than 1,300 stores (from Amazon to Zazzle!) a percentage of your purchase will automatically be donated to CONGENITAL DIAPHRAGMATIC HERNIA AWARENESS---Every breath they take is our ~BREATH OF HOPE~ at no cost to you (and you may even save money as the toolbar provides coupons and deals as well!). The toolbar also has a search box and each time you search the Internet, about a penny is donated to CONGENITAL DIAPHRAGMATIC HERNIA AWARENESS---Every breath they take is our ~BREATH OF HOPE~ http://www.breathofhopeinc.com/

Please hurry and do this now so that we can earn the $1 bonus per toolbar!

And, please pass this along to all of your friends. The two minutes it takes to add this toolbar to your browser can make a lifetime of difference for our cause!

Get the toolbar NOW! http://www.goodsearch.com/toolbar/bre...

Please note: All funds raised through GoodSearch to Breath of Hope are redirected to Medical Research that will benefit congenital diaphragmatic hernia!

Happy Easter from Breath of Hope

2010-04-04T10:04:00.000-04:00

Easter is the demonstration of God that life is essentially spiritual and timeless. - Charles M. Crowe

Easter tells us that life is to be interpreted not simply in terms of things but in terms of ideals. - Charles M. Crowe

I am the resurrection and the life: he that believeth in me, though he were dead, yet shall he live. And whoever liveth and believeth in me shall never die. - Bible: John, 11. 25

Do not abandon yourselves to despair. We are the Easter people and hallelujah is our song. - Pope John Paul II

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

2010-03-30T19:14:00.001-04:00

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.

Pennsylvania Proclamation for March 31, 2010

2010-03-29T19:59:00.001-04:00

The State of Pennsylvania...

2010-03-24T20:07:00.000-04:00

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

2010-03-24T18:13:00.000-04:00

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!

Pleasant Hill, California Issued Proclamation!

2010-03-18T18:16:00.000-04:00

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

First Annual CDH Walk of Hope - March 27, 2010

2010-03-17T19:06:00.000-04:00

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 www.active.com
More information contact Shannon 530-208-6421

MJ is very proud of them!

Happy Saint Patrick's Day

2010-03-17T07:51:00.001-04:00

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.

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

2010-03-13T19:45:00.000-05:00

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!

Random Quote

2010-03-11T12:07:00.000-05:00

People in their right mind never take pride in their talents.

- To Kill A Mocking Bird - Harper Lee

Vermont has issued their Proclamation for March 31st to be Congenital Diaphragmatic Hernia Awareness Day!

2010-03-10T18:41:00.000-05:00

Thank you Tiffany, Syren's Mommy!

It is beautiful! Not as beautiful as these children but close!

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

2010-03-09T21:51:00.000-05:00

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

2010-03-09T17:38:00.001-05:00

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

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

Why is Awareness for Congenital Diaphragmatic Hernia So Important?

2010-03-07T11:26:00.004-05:00

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!

For Our Turquoise Warriors!

2010-02-26T19:51:00.001-05:00

Available at the Carepress Store here - if you go to the store, it is less than going out to the Cafepress Marketplace!

Update on Birth at Cardinal Glennon - Angel Ali

2010-02-23T07:06:00.000-05:00

Many of you saw the news that a brave family underwent the tracheal occlusion surgery - what was more fascinating that they used a gel as the balloons for the trach that would absorb so a second surgery would not be needed for removal.

Ali did very well at birth, however, we were just made aware by his dear Aunt that he chose wings. Such sad news. We hope his family knows we all hold them in our hearts and prayers. Many of us understand a bit of what it is like to have an angel touch our lives as Ali did.

Please keep the Davis Family and their friends - and the amazing staff at those hospitals - in your thoughts and prayers.

http://www.cardinalglennon.com/News/Pages/FirstBirthatCardinalGlennonaSuccess.aspx

Quote about Courage...

2010-02-15T17:51:00.000-05:00

Whatever you do, you need courage. Whatever course you decide upon, there is always someone to tell you that you are wrong. There are always difficulties arising that tempt you to believe your critics are right. - Ralph Waldo Emerson

Whole Foods Nickles for Nonprofits - Continued....

2010-02-07T09:41:00.001-05:00

Breath of Hope was one of the nonprofits chosen to benefit from the Nickles for Nonprofits at the Charlottesville, Virginia Whole Foods for the month of January. However, Whole Foods called us after the Earthquake in Haiti and asked if they could collect for the American Red Cross for Haiti Relief the remainder of the month of January. Of course we agreed. They then made Breath of Hope and Ronald McDonald House the nonprofits for the month of February!

Medical Research Support Results

2010-01-23T02:07:00.000-05:00

Another step forward in an effort to further the care of congenital diaphragmatic hernia infants has been accomplished! Please read here.

This was an effort collaborated by a team from the Saint Louis Fetal Care Institute - Cardinal Glennon, SSM Saint Mary's Health Center and Saint Louis University.

Hope for Haiti

2010-01-17T12:58:00.000-05:00

We are all deeply concerned with the efforts in Haiti to get help and essential needs to the people there. As many know a magnitude 7.0 earthquake hit the city of Port-au-Prince on Tuesday, January 12th. Many businesses and nonprofits are stepping in to raise funds for this effort. The estimate for lives lost in this small country exceeds all other natural and man-made disasters of this century. The Haitian people are a very resiliant group of amazing people. We hope that they know the efforts of many out there, not just in the United States but world wide.

Please consider sending a donation to the many charities out there that are working to help the people now and in the future. We have listed a few below:

American Red Cross

Doctors Without Borders

OXFAM-AMERICA INC

CARE

UNICEF

CDH in the News - Parker Reese's Legacy

2010-01-11T08:19:00.002-05:00

Very proud that we refer families who have children diagnosed with congenital diaphragmatic hernia to Parker Reese Foundation in North Carolina. Please read this article.