The Leonard P. Zakim Bunker Hill Memorial Bridge Raises Congenital Diaphragmatic Hernia Awareness!

The Leonard P. Zakim Bunker Hill Memorial Bridge in Boston, Massachusetts will be raising Congenital Diaphragmatic Hernia Awareness on April 19th, 2015 by lighting up blue, pink and yellow.

Photo courtesy of Scott Glovsky

Special thanks to our Awareness Committee and everyone at the MassDOT for taking action against Congenital Diaphragmatic Hernia!

Want to see your local buildings and landmarks lit up blue, pink and yellow on April 19th? Send them a request! Contact our awareness committee at awareness@cherubs-cdh.org with any questions.

2013 so far for CHERUBS

2013 so far for CHERUBS:

* Senate Resolution for April 2013 as National CDH Awareness Month passed UNANIMOUSLY
* House of Resolution for April 2013 as National CDH Awareness Month currently in committee with new Co-Sponsors
* Capitol Hill visit for CDH Research Fund with plans underway!
* April 19th Marches and Events in Washington DC, Chicago, NYC, Seattle, Portland, Peoria, St Louis, Gainesville, Philadelphia, Denver, Phoenix, Las Vegas, the UK, Brazil
* Over $20,000 raised for CDH Research
* Over 12,000 Facebook Fans
* Over 4400 members
* Represented the CDH Community at the 2013 American Pediatric Surgical Association conference
* Represented CDH families at the 2013 DHREAMS meeting
* New FB app for our CDH Family Forums
* New members to our Medical Advisory Board
* MANY local events and fundraisers
* New weekly e-newsletter
* Dozens of TV and newspaper interviews
* 6 new videos
* New CDH Fundraising Kit
* Over 150 totebags sent out to new and expectant CDH families
* Nominated for a Health Advocacy Award and won several awards for being an outstanding non-profit organization
* We have visited many cherubs and families in the hospital and unfortunately gone to funerals as well. We are not just an "on-line support group", we are working hard to make a REAL difference not just in funding research and raising awareness but by being there for the families that need us.

Upcoming still for 2013:

* First ever joint International Medical & Family Conference this July in Boston with attendees from 5 countries so far
* Speaking at the CDH Community at the 2013 International CDH Study Group Conference in Holland in June
* 2 Scholarships for High School Seniors (Cherubs or siblings)
* MANY local get-togethers, picnics and fundraisers
* 2013 Stories of Cherubs Book featuring over 500 cherubs
* 2013 CDH Magazine
* New web site
* On-line CDH RESEARCH DATABASE!
* 2013 Masquerading Angels Ball in Raleigh in October
* 2013 CDH Research Raffle
* 2013 CDH Research Grant Facebook Contest
* UK CDH Ball
* UK Member Get-Together

And wait until you see what we're doing in 2014!!!

What is Congenital Diaphragmatic Hernia?

CDH occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth. CDH occurs in 1 of every 2500 births; somewhere in the world, a baby is born with CDH every 10 minutes. 50% of babies diagnosed with CDH do not survive. The cause is not known. Over a half million babies have been born with CDH since 2000.

CDH is as common as Spina Bifida and Cystic Fibrosis but there is very little awareness and even less research. 1600 babies are born with CDH every year in the United States. Globally, a baby is born with CDH every 10 minutes.

CHERUBS is working hard to raise more CDH Awareness, and in turn, more CDH Research, while we continue to support families affected by this devastating birth defect.

Like what we do? Please share this status!

Please donate to help us fund all of this and so much more! Donate via the tab on our FB page or at http://www.cdhdonations.org/

Contact Tracy about volunteering at volunteer@cherubs-cdh.org

Contact Melissa about holding a fundraiser at mlarrison@cherubs-cdh.org

Learn more about CHERUBS at http://www.savethcherubs.org/

What does CHERUBS do for CDH Families?

What does CHERUBS do for CDH Families?

cherub Liam Hunt

* CDH HOPE Totebags for new and expectant parents full of accurate and easy-to-understand information as well as comfort items
* Information packets for parents of older survivors and grieving families full of accurate and easy-to-understand CDH information
* Financial Assistance for families
* CDH Research Bill currently in the Senate
* $10,000 grants for CDH Research
* Annual International CDH Conference
* International & State Representatives and Hospital Angels to help families on a local level
* Local get-togethers and events for families
* Safe, secure and free forums for families to have support 24/7.
* Parades of Cherubs and other events on the International Day of CDH Awareness on April 19th
* State and City Proclamations for the International Day of CDH Awareness on April 19th
* Save the Cherubs CDH Awareness campaign
* Extensive web site with accurate information
* Medical Advisory Board hosted CDH Q&A chats with members
* CDH Research Database
* Videos on CDH
* Free awareness graphics
* Adopt a Hospital Kits for hospitals to have info on hand for newly diagnosed families
* Awareness bracelets and ribbons for new members
* Stories of Cherubs books of the stories of all these precious children
* Calendars of Cherubs of all the photos of all these precious children
* Free personalized CDH Awareness Ribbon graphics

These are all services that we provide right now in 2012.   This list does not include fundraisers or items that we sell to raise awareness or all the many social media activities that we have.  Or the list of services that we have coming soon.  The list would be much, much longer if we included all other achievements and projects from the past 17 years.

We are honored to be here and to be a light of hope and support for CDH families during their darkest hours.  <3 a="a" href="http://www.cherubs-cdh.org" nbsp="nbsp">http://www.cherubs-cdh.org

Save the Cherubs Posters - Osmund "Oz" Wyatt Kidd-Ward

 Meet cherub Oz, a model for our Save the Cherubs Congenital Diaphragmatic Hernia Awareness campaign!   Today is Oz's Birthday and Angelversary.   Happy Birthday little one, may all the angels sing to you and all the cherubs dance with you on your special day.

Photo by MCate Photography

Download Full Size Poster - http://www.savethecherubs.org/SaveTheCherubs-MarthaCatePhotography-Kidd-WardOz25.png

Cafepress Items - http://www.cafepress.com/cherubs/7879449

Photo by MCate Photography

Download Full Size Poster - http://www.savethecherubs.org/SaveTheCherubs-MarthaCatePhotography-Kidd-WardOz22.png
Cafepress Items - http://www.cafepress.com/cherubs/7879409

 

Photo by MCate Photography

Download Full Size Poster - http://www.savethecherubs.org/SaveTheCherubs-MarthaCatePhotography-Kidd-WardOz24.png
Cafepress Items - http://www.cafepress.com/cherubs/7879462

Photo by MCate Photography

Download Full Size Poster - http://www.savethecherubs.org/SaveTheCherubs-MarthaCatePhotography-Kidd-WardOz22.png
Cafepress Items - http://www.cafepress.com/cherubs/7879568

 
 

Photo by MCate Photography

Download Full Size Poster - http://www.savethecherubs.org/SaveTheCherubs-MarthaCatePhotography-Kidd-WardOz21.png
Cafepress Items - http://www.cafepress.com/cherubs/7879405



Photo by MCate Photography
Download Full Size Poster - http://www.savethecherubs.org/SaveTheCherubs-MarthaCatePhotography-Kidd-WardOz20.png
Cafepress Items - http://www.cafepress.com/cherubs/7879344

Photo by MCate Photography

Download Full Size Poster - http://www.savethecherubs.org/SaveTheCherubs-MarthaCatePhotography-Kidd-WardOz20.jpg
Cafepress Items - http://www.cafepress.com/cherubs/7879502

 

Photo by MCate Photography

Download Full Size Poster - http://www.savethecherubs.org/SaveTheCherubs-MarthaCatePhotography-Kidd-WardOz17.jpg

Cafepress Items - http://www.cafepress.com/cherubs/7879590

 

Photo by MCate Photography

Download Full Size Poster - http://www.savethecherubs.org/SaveTheCherubs-MarthaCatePhotography-Kidd-WardOz15.jpg
Cafepress Items - http://www.cafepress.com/cherubs/7879504

 

Photo by MCate Photography

Download Full Size Poster - http://www.savethecherubs.org/SaveTheCherubs-MarthaCatePhotography-Kidd-WardOz14.jpg
Cafepress Items - http://www.cafepress.com/cherubs/7879551

 

Photo by Flippen Photography

Download Full Size Poster - http://www.savethecherubs.org/Savethecherubs-FlippinPhotography-KiddWard-Oz.png
Cafepress Items - http://www.cafepress.com/cherubs/7879481

 

Photo by MCate Photography

Download Full Size Poster - http://www.savethecherubs.org/SaveTheCherubs-MarthaCatePhotography-Kidd-WardOz03.jpg
Cafepress Items - http://www.cafepress.com/cherubs/7801407

 

Photo by MCate Photography

Download Full Size Poster - http://www.savethecherubs.org/SaveTheCherubs-MarthaCatePhotography-Kidd-WardOz04.jpg
Cafepress Items - http://www.cafepress.com/cherubs/7801406

 

Photo by MCate Photography

Download Full Size Poster - http://www.savethecherubs.org/SaveTheCherubs-MarthaCatePhotography-Kidd-WardOz07.jpg
Cafepress Items - http://www.cafepress.com/cherubs/7782097

 

Photo by MCate Photography

Download Full Size Poster - http://www.savethecherubs.org/SaveTheCherubs-MarthaCatePhotography-Kidd-WardOz12.jpg
Cafepress Items - http://www.cafepress.com/cherubs/7782094

 

Photo by MCate Photography

Download Full Size Poster - http://www.savethecherubs.org/SaveTheCherubs-MarthaCatePhotography-Kidd-WardOz13.jpg
Cafepress Items - http://www.cafepress.com/cherubs/7879608

 

Photo by MCate Photography

Download Full Size Poster - http://www.savethecherubs.org/SaveTheCherubs-MarthaCatePhotography-Kidd-WardOz01.jpg SaveTheCherubs-MarthaCatePhotography-Kidd-WardOz01.jpg
Cafepress Items - http://www.cafepress.com/cherubs/7782086

Photo by MCate Photography

Download Full Size Poster - http://www.savethecherubs.org/SaveTheCherubs-MarthaCatePhotography-Kidd-WardOz100.jpg

Cafepress Items - http://www.cafepress.com/cherubs/7879482

Save the Cherubs Posters - Douglas Collins

Photos created by the Collins family while expecting cherub Douglas, a model for our Save the Cherubs Congenital Diaphragmatic Hernia Awareness campaign.

Photo by Tom Nguyen

Download Full Size Poster - http://www.savethecherubs.org/SavetheCherubs-NguyenTom-CollinsDouglas03.jpg

Cafepress Items - http://www.cafepress.com/cherubs/7883452

Photo by Tom Nguyen

Download Full Size Poster - http://www.savethecherubs.org/SavetheCherubs-NguyenTom-CollinsDouglas02.jpg

Cafepress Items - http://www.cafepress.com/cherubs/7883519

Photo by Tom Nguyen

Download Full Size Poster - http://www.savethecherubs.org/SavetheCherubs-NguyenTom-CollinsDouglas01.jpg

Cafepress Items - http://www.cafepress.com/cherubs/7883521 

Save the Cherubs Posters - Jim Beau Reinhardt

Meet CDH Survivor Jim Beau Reinhardt!!!   A model for our Save the Cherubs Congenital Diaphragmatic Hernia Awareness campaign!

Photo by Samantha Alday

Download Full Size Poster - http://www.savethecherubs.org/SaveTheCherubs-AldaySamantha-ReinhardtJimBeau01.jpg

Cafepress Items - http://www.cafepress.com/cherubs/7876850

Photo by Samantha Alday

Download Full Size Poster - http://www.savethecherubs.org/SaveTheCherubs-AldaySamantha-ReinhardtJimBeau02.jpg

Cafepress Items - http://www.cafepress.com/cherubs/7876852

Photo by Samantha Alday

Download Full Size Poster - http://www.savethecherubs.org/SaveTheCherubs-AldaySamantha-ReinhardtJimBeau04.jpg

Cafepress Items - http://www.cafepress.com/cherubs/7876856

Photo by Samantha Alday

Download Full Size Poster - http://www.savethecherubs.org/SaveTheCherubs-AldaySamantha-ReinhardtJimBeau01.png

Cafepress Items - http://www.cafepress.com/cherubs/7782461

Photo by Dawn Williamson
Download Full Size Poster - http://www.savethecherubs.org/SaveTheCherubs-WilliamsonDawn-2011conference01.png
Cafepress Items - http://www.cafepress.com/cherubs/7879623

Photo by Dawn Williamson

Download Full Size Poster - http://www.savethecherubs.org/SaveTheCherubs-WilliamsonDawn-2011conference02.png

Cafepress Items - http://www.cafepress.com/cherubs/7879732

 

Photo by Dawn Williamson
Download Full Size Poster - http://www.savethecherubs.org/SaveTheCherubs-WilliamsonDawn-2011conference03.png
Cafepress Items - http://www.cafepress.com/cherubs/7879746

Photo by Dawn Williamson
Download Full Size Poster - http://www.savethecherubs.org/SaveTheCherubs-WilliamsonDawn-ReinhardtJimBeau01.png
Cafepress Items - http://www.cafepress.com/cherubs/7879795

Photo by Dawn Williamson
Download Full Size Poster - http://www.savethecherubs.org/SaveTheCherubs-WilliamsonDawn-ReinhardtJimBeau02.png
Cafepress Items - http://www.cafepress.com/cherubs/7879796

Photo by Dawn Williamson
Download Full Size Poster - http://www.savethecherubs.org/SaveTheCherubs-WilliamsonDawn-ReinhardtJimBeau04.png
Cafepress Items - http://www.cafepress.com/cherubs/7879762

April 19 - Congenital Diaphragmatic Hernia Awareness Daily Celebration



April 19 - celebrating Congenital Diaphragmatic Hernia Awareness DAILY

April 19 Congenital Diaphragmatic Hernia Awareness Daily Celebration is about 1 thing - raising awareness for CDH and the babies it affects. ALL are invited to join in. From any group, any hospital, any country! It is owned by no one, restricted by no one, profited by no one. EVERYONE can join in, even if you personally have not been affected by CDH! CDH hurts babies EVERY day of the year!

♥ This is the ONLY non-trademarked day set aside for CDH that ALL CDH families, charities and researchers can participate in!  It is a day set aside to raise CDH Awareness and encourage others to do so every single day. ♥

WHAT DO YOU DO? Just raise CDH Awareness! Be involved as much or as little as you want to be! Wear a shirt, hand out fliers, light a candle, let balloons go, send out an e-mail, wear a ribbon, hold an event, tell at least 1 person what CDH is - just do at least 1 thing to raise CDH Awareness!!!

Every family affected by CDH has their own Congenital Diaphragmatic Hernia Awareness day - the day their child was diagnosed. The day that they became personally aware of CDH. We honor that and we promote CDH Awareness Daily.

In the past year, since CHERUBS and 1000's of CDH families have been able to use the term "Congenital Diaphragmatic Hernia Awareness" freely after winning the fight against the trademark on the phrase on April 19, 2010, we have raised CDH Awareness on an astronomical level.   CHERUBS has been on television, in numerous newpaper articles, several national contests, sold 100's of CDH Awareness items, enabled families to use free awareness graphics to get their own CDH Awareness gear, created over 250 personalized CDH Awareness ribbon graphics, submit the CDH Research Bill to Congressmen and found several co-sponsors, raised awareness at many events and conferences, created dozens of videos, included awareness in the CDH Baby Book, created the Save the Cherubs awareness campaign and even the first billboard.  All of this was made possible because we could use this phrase freely once again.

On the 1 year anniversary of this triumphant accomplishment for our children and the future of CDH Awareness and Research, we will celebrate with balloon releases, candle lighting ceremonies and more to raise more CDH Awareness, honor all children affected by CDH.

After several years of awareness being inhibited, we have a lot of catching up to do!!!!  We are working hard to make 2011 even better than 2010 to raise awareness and help babies affected by Congenital Diaphragmatic Hernia.   Join us, wherever you are, in helping the cherubs!

25 Easy Ways To Participate In the 2011 CDH Awareness Daily Celebration

1. Tell someone about CDH!
2. "Attend" the CDH Awareness Daily Facebook Event Page
3. Share the video above on Facebook, Myspace, Twitter or your blog and tell others whatCDH is
4. Use any of the graphics below on your blog, site or social media and tell others what CDH is
5. Ask others to participate in the CDH Research Bill and sign the petition
6. Use the above graphics as your profile photo on sites
7. Wear a ribbon
8. Wear a CDH Awareness shirt, hat or other item
9. Make a video in honor/memory of your cherub
10. Teach your children the CDH Kid's Song
11. Add a twibbon to your Facebook or Twitter accountRelease balloons
12. Light a candle
13. Decorate a jar and ask a local store / restaurant to let you set it up until Mother's Day to collect money for CDH Research
14. Start a Firstgiving page, ask others to give to CDH Awareness, Research or Support in honor / memory of your cherub
15. Start a Cause page, ask others to give to CDH Awareness, Research or Support in honor / memory of your cherub
16. Take CDH Awareness ribbon cookies or cupcakes to work
17. Participate in the Save the Cherubs campaign by taking photos
18. Put a sign on your car about CDH
19. Contact your local media to share your story
20. Let your cherub or other children wear wings all day to raise awareness
21. Hold an event or fundraiser (car wash, lemonade stand, collect change, work with local restaurant, etc)
22. Create a CDH Awareness blog or site
23. Collect items for the CDH HOPE Totebag Project
24. Donate to a CDH Research facility
25. Adopt a CDH Hospital

Congenital Diaphragmatic Hernia Research Congressional Bill

2011 CDH Awareness Cherubs Video

Congential Diaphragmatic Hernia Research Bill

In support of research funds for the severe birth defect, Congenital Diaphragmatic Hernia.

CDH affects 1600 babies in the United States every year, with a 50% mortality rate. It occurs when the diaphragm fails to fully form, allowing the organs into the chest cavity and preventing lung growth. The cause of Congenital Diaphragmatic Hernia is not known. There is very little research on CDH, even though it is as common as Cystic Fibrosis and Spina Bifida. More research funds are desperately needed and we are appealing to the United States government to help these babies.

How you can help:

1. Look Up Your Congressmen To find his / her mailing address
2. Download Letter to Send To Your Senator / Congressman
3. Include The CDH Research Bill and a photo of your cherub
4. Sign the on-line petition.

 



 
Congenital Diaphragmatic Hernia Research Congressional Bill

  

To amend the Public Health Service Act to provide for the national collection of data on babies born with Congenital Diaphragmatic Hernia in a standardized manner, and for other purposes.

Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

This Act may be cited as the ‘CDH Research Act of 2011’.


SECTION 2. FINDINGS.

The Congress finds as follows:

(1) Congenital Diaphragmatic Hernia is a birth defect.

(2) Congenital Diaphragmatic Hernia has a rate of occurrence of 1 in every 2500 babies.

(3) Congenital Diaphragmatic Hernia affects approximately 1600 babies each year in the United States

(4) Congenital Diaphragmatic Hernia occurs when the diaphragm fails to fully form, allowing abdominal organs to migrate into the chest cavity and preventing lung growth.

(5) The majority of Congenital Diaphragmatic Hernia patients have underdeveloped lungs and/or poor pulmonary function.

(6) Congenital Diaphragmatic Hernia patients often endure long-term complications such as pulmonary hypertension, pulmonary hypoplasia, asthma, gastrointestinal reflex, feeding disorders and developmental delays.

(7) Congenital Diaphragmatic Hernia survivors sometimes endure long-term mechanical ventilation dependency, skeletal malformations, supplemental oxygen dependency, enteral and parenteral nutrition and hypoxic brain injury.

(8) Congenital Diaphragmatic Hernia has a survival rate of 50%.

(9) Congenital Diaphragmatic Hernia has affected over 600,000 babies worldwide since the year 2000.

(10) Babies born with Congenital Diaphragmatic Hernia endure extended hospital stays in intensive care with multiple surgeries. Extended hospital stays in some cases have exceeded one year.
(11) Congenital Diaphragmatic Hernia is as common as Spina Bifida and Cystic Fibrosis.

(12) Congenital Diaphragmatic Hernia is diagnosed in utero in only 75% of cases.

(13) Congenital Diaphragmatic Hernia is treated through mechanical ventilation, heart and lung bypass (Extracorporeal Membrane Oxygenation) machines and surgical repair.

(14) Congenital Diaphragmatic Hernia surgical repair is often outgrown thus leading to reherniation and requiring additional surgery.

(15) Congenital Diaphragmatic Hernia does not discriminate based on race, gender, religion, economic status or lack of prenatal care.

(16) The cause of Congenital Diaphragmatic Hernia is unknown.

(17) Congenital Diaphragmatic Hernia takes more lives in the average year in the United States than lightening strikes, tornadoes, hurricanes and floods combined.

(18) The average hospital bill per Congenital Diaphragmatic Hernia patient is $500,000.

(19) The estimated total annual economic impact of Congenital Diaphragmatic Hernia in the United States is in excess of $800,000,000.
(20) Annual Federal support for Congenital Diaphragmatic Hernia research at the National Institutes of Health is currently estimated at less than $5,000,000.

SECTION 3. SENSE OF CONGRESS ON NIH FUNDING FOR CONGENITAL DIAPHRAGMATIC HERNIA RESEARCH.

(1) In General- It is the sense of the Congress that the Director of the National Institutes of Health should increase the allocation of funds and other resources for Congenital Diaphragmatic Hernia research.

(2) Measures To Increase the Research of Congenital Diaphragmatic Hernia shall include—

(a) Funds for national CDH patient registries through current databases kept by research organizations such as The International Congenital Diaphragmatic Hernia Study Group and CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Advocacy and Support for the purposes of finding commonalities in the search of possible causes and better treatments of Congenital Diaphragmatic Hernia.
(b) Funds for national CDH patient registries through current databases kept by research organizations such as The International Congenital Diaphragmatic Hernia Study Group and CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Advocacy and Support for the purposes of researching the long term health of survivors of Congenital Diaphragmatic Hernia.

(c) Funds for genetic research into possible causes of Congenital Diaphragmatic Hernia.
(d) Funds for research into more successful surgical and neonatal medical procedures that may increase the survival rate of babies born with Congenital Diaphragmatic Hernia.

SECTION 4. NATIONAL PUBLIC AWARENESS CAMPAIGN.

(1) In General- The Secretary of Health and Human Services shall carry out a national campaign to increase public awareness and knowledge of Congenital Diaphragmatic Hernia

(2) Measures To Increase the Public Awareness of Congenital Diaphragmatic Hernia under the national campaign under subsection (1) shall include—

(a) the dissemination of information on the definition of Congenital Diaphragmatic Hernia;

(b) the dissemination of information on good neonatal care of Congenital Diaphragmatic Hernia patients; and

(c) the promotion of good prenatal care and ultrasound to detect Congenital Diaphragmatic Hernia in utero.

No One Knows

(repost from 2008)



No One Knows....
by Dawn Williamson

No one knows what it's like to be diagnosed with Congenital Diaphragmatic Hernia and have your world shatter - unless they have been there themselves.

No one knows what it's like to watch your baby struggle to breathe - unless they have been there themselves.

No one knows what it's like to cry yourself to sleep at night wondering if today was the last day you had with your child and the hospital could call at any minute - unless they have been there themselves.

No one knows what it's like to have to leave the pediatric intensive care unit because you've been there so long that they kick you out - unless they have been there themselves.

No one knows what it's like to sleep on the floor of the ICU waiting room because the Ronald McDonald House is too far way at just 2 blocks from the hospital and you need to be RIGHT THERE in case your child needs you - unless they have been there themselves.

No one knows what it's like to sit in a Care Conference crying for your child's rights, begging staff to not give up on your baby and send him to a chronic care facility - unless they have been there themselves.

No one knows what it's like to have to learn how to work life support systems that your child's very being depends on - a ventilator, an oxygen concentrator, feeding pumps - unless they have been there themselves.

No one knows what it's like to ask yourself "Why my child?" so many times that even God is tired of hearing it - unless they have been there themselves.

No one knows what it's like to have to explain over and over and over and over what your child's medical condition is to family and friends and a society that has never heard of it - unless they have been there themselves.

No one knows what it's like to struggle with marriage issues because you're dealing with reality in different ways and one of you is stuck with making all the decisions while the other lives in la-la-land - unless they have been there themselves.

No one knows what it's like to scream at a nurse that they don't know what they are doing while suctioning your child's ET-tube and it's about to come out and if they don't step away from his bed you will step in and physically remove them - unless they have been there themselves.

No one knows what it's like to have to fight to get treatment for a bedsore on your child's back from being in the same position for 3 weeks - unless they have been there themselves.

No one knows what it's like to actually loudly cheer for a child to pee - just pee - unless they have been there themselves.

No one knows what it's like to never hear your child cry until they are a year old because there are tubes down his throat preventing his vocal cords from working - unless they have been there themselves.

No one knows what it's like to not hold your child until 2 weeks after he was born because he's hooked up to too many machines keeping him alive - unless they have been there themselves.

No one knows what it's like to lose count of how many IVs your child has had, or what scars are from what surgery, or how many meds he's been on in his entire life, or doctors he's seen - unless they have been there themselves.

No one knows what it's like to be on your hands and knees in a surgical waiting room begging and pleading with God to take you instead of your child - unless they have been there themselves.

No one knows what it's like to put a tube down your child's nose and into their stomach, or past the stomach - while making sure not to hit the lungs - so that your child can eat formula from a pump - unless they have been there themselves.

No one knows what it's like to miss a pulse ox when it's gone because then you can't sleep because you're terrified that your child will stop breathing - unless they have been there themselves.

No one knows what it's like to hook your child's ventilator up to a car battery because the power is out, while screaming at the electric company to fix the problem and talking to the doctors and ordering an ambulance at the same time - unless they have been there themselves.

No one knows what it's like to call 911 more than you call the pizza delivery place - unless they have been there themselves.

No one knows what it's like to duck from flying hearing aids because your 2 yr old can't understand that they aren't toys and need to stay in his ears - unless they have been there themselves.

No one knows what it's like to watch "normal" healthy kids and make wishes for your child that you aren't sure will ever happen, like riding a bike or going to school or playing baseball - unless they have been there themselves.

No one knows what it's like to have had more rides in ambulances in your life than in taxi cabs - unless they have been there themselves.

No one knows what it's like to go out in public and have people point and whisper about your baby, because he's in his stroller attached to a vent, oxygen tank, feeding pump, and pulse-ox - and yet you put on a cute little outfit or a baseball cap on his head in a feeble attempt to make him look less conspicuous and more normal - unless they have been there themselves.

No one knows what it's like to go into the ladies room and cry alone because you don't want your baby to see you crying beside his hospital bed - unless they have been there themselves.

No one knows what it's like to try to sing songs and read children's books to your child like everything is normal and you so desperately want all the normal things healthy families have, even though you don't know if your child will live through the week because he has a blood infection - again - unless they have been there themselves.

No one knows what it's like to be told your child's kidneys are shutting down, oxygen levels are below 50, and he won't live through the night - but he does - unless they have been there themselves.

No one knows what it's like to travel with more electric equipment in your car than the FBI - unless they have been there themselves.

No one knows what it's like to spell D-I-A-P-H-R-A-G-M-A-T-I-C H-E-R-N-I-A in your sleep - unless they have been there themselves.

No one knows what it's like to hire home health nurses and then have to oversee them and make sure that they aren't sleeping when your child's vent pops off his trach at 1 am - unless they have been there themselves.

No one knows what it's like to jump up and down squealing because your child is walking - at 2 and a half yr old - unless they have been there themselves.

No one knows what it's like to battle the school system and have an IEP for a child who has a feeding tube, hearing aids, thick eyeglasses and being told that they "can't handle all his issues" so you are better off homeschooling - unless they have been there themselves.

No one knows what it's like to consider moving to another country to get their universal health care because your child doesn't qualify for any decent insurance with all his pre-existing medical conditions and you can't afford the medical bills of the $6 million dollar baby unless you make so little money that you qualify for Medicaid - unless they have been there themselves.

No one knows what it's like to be asked "so what caused him to be sick?" while being looked at like YOU did something to cause it - and have the only answer that anyone has to that question "I DON'T KNOW!" - unless they have been there themselves.

No one knows what it's like to carry medical records with you every where you go "just in case" - unless they have been there themselves.

No one knows what it's like to perform CPR on your own child - more than once - unless they have been there themselves.

No one knows what it's like to plan holidays and vacations around hospitalizations, doctor visits, therapy appts and cold and flu seasons - unless they have been there themselves.

No one knows what it's like to not be able to go home for Christmas because your child could catch a cold that would kill him - unless they have been there themselves.

No one knows what it's like to grieve a LIVING child because your dreams are gone, then living with the guilt of feeling that way - unless they have been there themselves.

No one knows what it's like to try to communicate with a child who can't talk and struggles with sign language to the point that both of you cry - unless they have been there themselves.

No one knows what it's like to be young and have the responsibility of not only being a parent but a parent of an extremely special needs child - unless they have been there themselves.

No one knows what it's like to scream down the hospital hallway "Help! My child can't breathe!" or "Where is my son's 2:00 meds?" or "He is allergic to that!" - unless they have been there themselves.

No one knows what it's like to leave the hospital without your baby but with his bed sheets and linens instead because he's allergic to EVERYTHING and so you wash them in gentle detergent and bring them back for him - unless they have been there themselves.

No one knows what it's like to live in constant worry that another child will spill his milk on your child, sending him into anaphylactic shock if the epi pen you carry EVERYWHERE isn't given fast enough - unless they have been there themselves.

No one knows what it's like to be in the hospital so much you're on a first name basis with your surgeons, PICU doctors, nurses, secretarial staff and the cleaning crew - to the point that you double-date with your spouses, take vacations together and still send each other Christmas cards 15 yrs later - unless they have been there themselves.

No one knows what it's like to be in the hospital so long that when you come home you actually miss the cafeteria food - unless they have been there themselves.

No one knows what it's like to spend every hour that visiting isn't permitted in the PICU in the medical library, looking up your child's birth defect because NO ONE SEEMS TO KNOW WHAT THE HELL IT IS or where you can find information or support. And then spending hours beside your child's hospital bed with a medical terminology book translating it all - unless they have been there themselves.

No one knows what it's like to be told that your child won't live to be transported to the larger hospital so you should say good-bye - unless they have been there themselves.

No one knows what it's like to have a surgeon tell you "we've done this surgery so many times on him that we aren't sure how else to go in there" - unless they have been there themselves.

No one knows what it's like to watch your child's first haircut being done by a nurse to prep for an IV going into this head instead of at the barber - and still taking photos of it for his baby book - unless they have been there themselves.

No one knows what it's like to be told that your son will never see or hear or breathe on his own, and then show them that they are wrong - unless they have been there themselves.

No one knows what it's like to be so frustrated with feeding therapy, begging your child to please "take just one bite for Mommy, PLEASE" - unless they have been there themselves.

No one knows what it's like to be so excited to meet a medical professional who UNDERSTANDS what CDH is and who really, truly cares about these kids, your kid, and how that person now has your gratitude and part of your heart forever - just for caring - unless they have been there themselves.

No one knows what it's like to lose your child - unless they have been there themselves.

No one knows what it's like to lose your child in your own arms, while they look up at you and you try and try to save them but can't - and the guilt you live with every day for not being able to perform a miracle, the impossible, more than even the doctors because you're mommy and you're supposed to do the impossible - unless they have been there themselves.

No one knows what it's like to pick out the clothes your child will be in forever, buried in and what toys and books to pack with him - unless they have been there themselves.

No one knows what it's like to cry so much your heart feels like it's coming out of your throat because you miss your baby so much - unless they have been there themselves.

No one knows what it's like to mourn and grieve and try to make something good come from all the sadness without going over the deep end and trying to make a martyr out of your child's memory and turning them into a superhero instead of ... your baby .... because you want to remember them for who they were and not who you wanted them to be - unless they have been there themselves.

No one knows what it's like to ask God a different "Why my child?" question millions and millions of times until He cries with you - unless they have been there themselves.

I know, because I have been there. I didn't read it in a book or in someone else's story. I didn't learn about this from an article or research abstract. I don't pretend to understand things I never experienced. I lived it all. I cried it. I survived it. I woke up to every single day. I slept with it on my mind every single night. I was immersed in this world of CDH for 6 and a half years. I still am. CDH is more just a birth defect. It's more than a day or a few weeks in the hospital. It's more than 1 surgery. It's every single moment in a cherub's life. Every single one. I know this because I lived it.

And I know over 3400 other moms who have lived it too. Who understand. Who didn't learn from book or stories but who lived it. Parts of it or all of it. They understand. They are the moms and dads and children of CHERUBS.

http://www.cdhsupport.org

Prayers & Quotes for September 23, 2010

Prayers & Quotes for September 23, 2010

If you have a prayer request for a cherub or a family member of a cherub, you can send it to prayers@cdhsupport.org.

Please keep the following in your thoughts and prayers:

Newborn cherub Elijah V., arrived 7/8. He has had his CDH repair, successfully came off of ECMO and is off his nasal cannulas. He is working on feeds.

Newborn cherub Finley D. arrived 8/12!! Please pray she continues making progress with her feeds, for that is what is holding her up from going home!

Newborn cherub Mattiaus D., arrived 8/24 and has had his repair surgery. He is off the vent and now is on CPAP. Please pray for his continued healing.

Newborn cherub Dante M. arrived 8/28, a little over a month early, along with his twin sister. Dante is having surgery today and has proven to be a fiesty little boy! His twin sister after 3 weeks in the NICU was released to go home. Please keep Dante and his family in your thoughts and prayers.

Newborn cherub Savannah Q., arrived 8/30. She had her surgery on day 1 and spent 11 days on ECMO. She has been extubated and appears to be a fighter!

Newborn cherub Airynn E., arrived 8/31. She has had her surgery repair and is on the road to recovering. Please pray for strength for Airynn and her family.

Newborn cherub Megan H. arrived 9/1. She is struggling with pulmonary hypertension and has not had her repair surgery. Please pray for strength for Megan and her family.

Newborn cherub Heath F., arrived 9/8! He has had his CDH repair and is breathing room air! Please pray for his recovery and his feeds go very well.

Newborn cherub Kendall F. arrived 9/14, please pray for strength for her and her family for she is being transported to another hospital this afternoon. CDH surgery scheduled for tomorrow. After CDH surgery tomorrow, they will perform heart surgery Monday. Her family asks that everyone will pray that the transport from one hospital to another will go well for her, and tomorrow's surgery will allow her a chance at life.

Newborn cherub Whitney M., arrived 7/21 and was welcomed home on 9/15!! Welcome home Whitney!

Newborn Quinn T. was born 6/22 and was welcomed home on 9/3!! Welcome home Quinn!

Newborn cherub James B. is so close to going home! Please keep this amazing boy in your thoughts and prayers and hope he gets to go home soon, tentatively set for 10/27!!

Newborn cherub Micah P. is still in the NICU and will turn 1 on 9/30. Pray for continued strength for Micah and that he may get to go home soon.

Teenager Cherub Logan W. had his pectus repair surgery on 9/9. Please pray for his pain to subside and for his recovery. He was released from the hospital 9/15 and has a long recovery ahead of him.

Cherub Sofia C. had her gallbladder removed last week, please pray for her recovery.

Cherub Alannah has reherniated and her surgery is today! Please pray for her recovery.

To all our families and friends that are fighting against the flu, colds, sickness…may you feel better soon and have no complications.



Cherubs on Their Way:

Cherub Aurie B., due 9/17 - have no updates to give
Cherub "baby boy" G., due 10/11
Cherub Isaac I., due 10/14
Cherub Axel C., due 10/27
Cherub Abel B., due 10/28
Cherub Boone P., due 11/2
Cherub Zoe C., due 12/1
Cherub Hollis Y., due 12/2
Cherub Flynn L., due 12/10
Cherub Wyatt M., due 12/19
Cherub baby girl G., due 1/15
Cherub Shiloh G., due 1/19

All families expecting a baby with CDH, may you have continued hope and strength for the journey that lies ahead.


Newly Grieving Families:

Please keep the family of newborn cherub Addison R. in your prayers for comfort and strength. Addison was born Sept. 12, 3lbs. 15 oz. and 16 inches long with Trisomy 18 and CDH. She grew her wings on 9/12. Please keep her parents Angie and Ryan and siblings Colby and Karlee in your thoughts and prayers during this difficult time.

Please keep the family of newborn cherub Skylar M. in your prayers for strength and comfort. Skylar lost her battle with CDH on 9/22.

Please keep the family of newborn cherub Savannah F. in your prayers for comfort and strength. Savannah was born on 8/23 and grew her wings on 8/31.

Requests prayers for the family of newborn cherub John, who lost his battle with CDH on Saturday, 9/17.

Please pray for newborn cherub Hari's family, who grew his wings this month.

Please pray for newborn cherub Alex's family, who grew his wings this month.

Please pray for newborn cherub Emily's family, who grew her wings in the early morning of 9/18.

To all families affected by CDH and the loss of your precious child, may you find peace and comfort and know you are never alone, for so many people care about you.


Today’s Quotes:

‎"Nobody trips over mountains. It is the small pebble that causes you to stumble. Pass all the pebbles in your path and you will find you have crossed the mountain." ~Author Unknown

"Occasionally in life there are those moments of unutterable fulfillment which cannot be completely explained by those symbols called words. Their meanings can only be articulated by the inaudible language of the heart." ~Martin Luther King, Jr.

"The capacity for hope is the most significant fact of life. It provides human beings with a sense of destination and the energy to get started." ~Norman Cousins

"Hope is faith holding out its hand in the dark." ~George Iles

Win Some CDH Awareness Gear!

Pepsi Contest Within A Contest Prizes

1st place Grand Prize - Masquerading Angels Ball Vacation Package

Includes 1 CDH Awareness Ribbon Flip Camcorder, 2 Angel Ball tickets, 1 night in the Durham Hilton, 2 formal masks, 1 pair of adult angel wings, 2 Angel Ball T-Shirts, $50 gas card and a restaurant gift certificate. http://www.cherubsangelball.org

Valued at over $600.00.

2nd place Prize - CDH Awareness Family Package.

Includes 4 limited edition Sweat-Shirts, 4 hats, 1 Adopt A Hospital Kit (donated to the hospital of your choice), 1 CDH Awareness Kit, 1 CDH Baby Book, "Stories of Cherubs" Vol. I & II, "Cooking with Cherubs" Vol. II, CDH Awareness Poster and 1 Cherubs Calendar. CDH Awareness Kit includes CDH Ribbon Totebag, Car Bumper Magnet, Awareness Bracelets, Parent Reference Guides, CDH Awareness Ribbons and more! http://www.cdhawarenessshop.org

Valued at over $400.00.

3rd place Prize - CDH Awareness Package

4 limited edition T-Shirts, 2 hats, mousepad and CDH Awareness Kit.   CDH Awareness Kit includes CDH Ribbon Totebag, Car Bumper Magnet, Awareness Bracelets, Parent Reference Guides, CDH Awareness Ribbons and more! http://www.cdhawarenessshop.org

Valued at over $200.00.

Limited Edition T-Shirts

Anyone who recruits 1500 votes will get a limited edition t-shirt!   That sounds like a lot but it's only 100 voters submitting 15 submissions per day (5 projects submitted 3 ways each).

How To Play:

Winners are determined by the number of entries into this contest.

You can submit entries in the following ways:

1.  Vote for a project and then post a comment on that project.  

You must comment this exact phrase "Vote entry for _____________ (your name), in honor / memory (choose one) of _____________ (your cherub)"  For example, Dawn would comment "Vote entry for Dawn Williamson, in memory of Shane Torrence".   Entries will be tabulated by computer so it's VERY important to post the comment exactly.

2.  You can vote and post a comment on each of all 5 projects for 5 entries per day!

3.  You can also vote by Facebook application on each of all 5 projects for an additional 5 entries per day!   

You must log in through Pepsi to comment though.

4.  You can also vote by text messages through your cell phone for each of all 5 projects for an additional 5 entries per day!   

You must log in through Pepsi to comment though.

5.  Your family and friends can submit up to 15 entries each for you each day!

15 entries total from 5 projects voted on 3 ways each.   They must log in through Pepsi to comment on the projects and use YOUR comment phrase for you to receive those entries.  You submit an infinite number of entries per day this way.

6.  Post, tweet, blog or otherwise post on-line each project for up to 30 additional entrie per day!

You must comment your comment phrase and then add the URL of your post/tweet/blog for verification.

You can set up sites, blogs, Facebook events or groups to get family and friends to help you in the contest!

You must follow all Pepsi Refresh rules and regulations.

This contest within a contest is sponsored by CHERUBS and participating donors and businesses.

You must be 13 years or older to participate.  You must 21 years or older to attend the Angel Ball. 

Winners will be announced October 25th!

September - Congenital Diaphragmatic Hernia MONTH

Look what September has bought the CDH community!   5 CDH projects in the Pepsi Refresh contest!!!!!   5 opportunities to make such a huge difference for Congenital Diaphragmatic Hernia!   

We can't tell you all enough how excited we are about this!!!   CDH families are posting flyers, posting all over the internet, wearing Vote for CDH shirts, dying their hair for votes, celebrities are helping us, colleges are helping us, the media is helping us, families are making videos for Pepsi, taking photos of their cherubs holding signs.   This will be a month that will turn CDH on it's head!!!!!   Not only with the Pepsi projects but with the CDH Research Bill and some other amazing news - this will be a month that none of us CDH families will forget!  We are so excited and invite ALL the CDH community to join us!   

Click here to vote for all 5 projects and some other great children's charities in the contest!

http://www.voteforcdh.org 

Here's what we can do to change the CDH world:

$250,000 for CDH Research - yes, you read that right!  A quarter of a million dollars for CDH Research!!!!  We've been sitting on a huge CDH Research database for 13 years and not able to afford to do anything with it!  Now we can hire CDH Researchers (with years of experience!) to go through it, use and work with the CDH Study Group so that we can actually do something to help find the cause, prevention and best treatments for CDH!!!!   AND this will allow us to be able to bring together all the CDH Genetic Studies (Boston, DHREAMS and Baylor) into contact with over 3000 CDH families as well.   We've told families about these studies but now we can actually help them understand what they are about and why it's so important to participate in them.   This is our chance to sponsor research and work with 4 amazing CDH research institutions to be able to save cherubs.   Vote at http://www.refresheverything.com/cdhcherubs  or Text* 102542 to Pepsi (73774) 

$50,000 for CDH Awareness - more CDH billboards, posters in over 1600 malls across the country, more Save the Cherubs photoshoots and so very, very much more!!!!!  If you haven't seen our Save Our Cherubs campaign, please take a few minutes to go see what we're doing!  http://www.savethecherubs.org   This campaign is bringing all sorts of awareness to CDH in the most adorable way!  Vote at http://www.refresheverything.com/cherub or Text* 102365 to Pepsi (73774)

$25,000 for CDH Care Packages - have you seen the amazing things we've been doing with our CDH HOPE Totebag Project?  We've mailed out over 200 totebags to new and expectant CDH families that include so many things needed when dealing with CDH;  CDH Baby Books, Parent Reference Guides, Awareness items.  And items that may be needed if cherubs earn wings; disposible camera, hair lock holder, handprint kit.  Plus, so very much more.  All with donations by our amazing members!  Vote at http://www.refresheverything.com/cdhhopetote or Text* 102123 to Pepsi (73774)

$25,000 for Financial Assistance for Families - just this week alone we've had 3 families call and ask for financial help to cover their bills or gas to get to the hospital.   With our $30,000 annual budget for all our services, we haven't had funding to be able to help families out like we want to.  This grant would pay for hotel costs, airline fees, gas cards, food for families and more.  The economy has hit everyone hard and we all remember what it's like to have a sick baby and to have to worry about bills too.  Vote at http://www.refresheverything.com/cdhfamilies or Text* 101202 to Pepsi (73774) 

$25,000 for Hospital Info Kits - how many of us received a diagnosis and no information?  Or were told to terminate because there was no hope based on facts that your obstetrician got from outdated data?    How many of us were diagnosed in utero but even our obstetrician didn't know what CDH was?   Have you ever had to explain CDH to a pediatrician?    Then you understand why this grant is so important!   It will provide info to over 250 hospitals and will help 1000's of CDH families to get timely and accurate CDH information.   Vote at http://www.refresheverything.com/cdhhospitalkits  Text* 101211 to Pepsi (73774) 

If we win even just 1 of these grants, it would make a HUGE difference!   Not only in the funds to support the projects but in more CDH Awareness as Pepsi throws large press conferences and films commercials about winning projects.   A CDH Awareness commercial could make millions aware!

We also have some great smaller in-house contests about to start tomorrow, where you can win t-shirts, CDH Awareness Kits or a Angel Ball package just for voting and recruiting.... all the while raising MORE CDH Awareness!!!!   Keep up with our Facebook Vote for CDH page for details!  http://www.facebook.com/group.php?gid=123312954385123&ref=mf

The great thing about this contest is that you can go to one page, log in and vote for all these projects with just a few clicks.  http://www.voteforcdh.org

It also lists were every single dime of these grants will go so you KNOW that your vote will make a real difference and we be used honestly and for the purposes we promised.  And the best part - it costs nothing to vote!

CHERUBS is a public 501(c)III non-profit organization and all our financial info is transparent - we are the only CDH charity who posts our financial information on our site, including our tax returns, annual statements and IRS and State proof of legitimacy.  Just 18% of our donations went to operation costs last year.   No one at CHERUBS receives a salary, including lawyers.   Our focus is helping CDH families as much as we can!   http://www.cherubs-cdh.org 

http://www.voteforcdh.org

cherub Landon Kelly

cherub Braden Holt

cherub Aaron Younce

cherub sibling Nyah Kelly

CDH survivor Jessica Barry!

CDH survivor Sofia Carman!

CDH Survivor Jason Collins!