Sunday, May 31, 2009

CHERUBS and the American Pediatric Surgical Association

This week in Puerto Rico, 3 CHERUBS Board Members represented our organization and CDH families at the APSA convention.

We were able to talk to 100's of pediatric surgeons and start projects with several of them. We have an amazing project going on with the CDH Study Group, a group of about 90 CDH centers. We talked with doctors from every CDH center; we talked with many of the best CDH researchers in the world. We supplied data for families, ribbons for doctors (that were even worn during research speaches). Several surgeons even came up to us and thanked us for being there and for all we do for CDH families.... that touched our hearts so much to know they think we're doing a great service for their patients!!! We won't name all the doctors we talked to and we won't reveal our projects right now but we do want to thank the following for their invaluable information; Kevin and Pam Lally, Michael Harrison, David Kays, Priscilla Chui, Charles Stolar, Duncan Phillips, Bradley Rodgers and the doctors at UCSF, Boston Children's, Duke, CHOP, Cinncinnati Children's Hospital, the Canadian Pediatric Surgical Association and ACDHO.

The conference went incredibly, amazingly well. We learned A TON about so many different things and now have all the absolute latest research on CDH. We talked with many surgeons on ways to help families, create more CDH awareness and research together. It was an extremely exciting and productive meeting.

We even went snorkeling with a few of the surgeons and shared flights with some as well. Every opportunity educated us more and more about CDH and what all CDH research centers (including CHERUBS) has to offer.

On Saturday we also met in person with Pam Lally of the CDH Study Group and looked over each of our databases (confidentially of course) and spent a few hours discussing our research and findings for both organizations. We have big, big, BIG plans and are so incredibly proud and honored to working with the CDH Study Group and all 90 CDH Research Centers. It is CHERUBS objective to work with ALL CDH research centers and to accomplish as much as possible in the realm of CDH Research.

It took us 14 years to get here - but we did it. To do this research and have it make a difference. This is our 3rd attendance at an APSA conference - CHERUBS was the very first non-profit ever admitted into this event in 1995. In 2009, most of the surgeons knew exactly who CHERUBS is and what we stand for! We have come a long, long way since then!! We truly could not have had a more positive or productive conference or been made to feel more comfortable and welcomed and like part of the group.

I have to say thank you to Barb and Bren…. they both did an amazing, amazing job and I am so, so proud of them and so grateful to them. Our Board Members paid for our travel expenses out of our own personal pockets and conference costs were paid for by grants. Not a single penny from donations went to help send CHERUBS to this conference but 1000's of CDH families will benefit from all the amazing things are happening!

It's been an absolutely incredible week for CHERUBS and for all CDH families around the world!

Stay tuned for more details, more research news and more research data!

Sunday, May 24, 2009

A Sneak Peak At Our CDH Research Site!

We've been hard, hard at work for months now on the Congenital Diaphragmatic Hernia Research Database site!!! Once completed, this site will survey all CDH parents and researchers and allow research statistics to be tabulated on the fly!

This CDH Research Study is the only long-term, in depth CDH study of it's kind in the world. It is the largest database of CDH patient, family medical history, pregnancy history and long-term care data. Together with the CDH Study Group and their database of 1000's of CDH patients immediate care and medical histories, we hope to learn information that will help all babies born with Congenital Diaphragmatic Hernia and learn how to stop CDH from happening to babies of the future. It is 100% confidential, server secure and HIPPA complient.

This is CDH research happening right NOW! CDH Research that every patient and every family can join in to help - regardless if your child is a survivor or non-survivor or whether you have DNA samples available (as many parents of non-survivors do not). Every CDH family can participate. Every CDH family can make a difference!

Below is some information tabulated from our survey that includes members who joined CHERUBS by April 30, 2009. The following data only includes primary patient information - it does not include secondary memberships (grandparents, additional parents, etc) or CDH researchers memberships.

This data includes 2431 CDH patients. It does not include all other non-patient or secondary members.

CDH Patients In CHERUBS Membership By State:
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CDH Patients In CHERUBS Membership By Country:
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Want to talk to other CDH families in your state or country? Please contact your State or International Representative or visit our CDH Forums.

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CHERUBS Membership Survival Rates 1985 - 2008

This data did not include patients not yet born, those patients who did not include their birth dates and those who joined while expecting but whose data hasn’t been updated since birth. This does not show the CDH survival rate – it does show that Survivors and Parents of Survivors are consistently joining CHERUBS 2 to 1 over Grieving Parents.


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CDH Repairs
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CHERUBS has been tabulating CDH Research Studies since 1997. Now, with the help of 1000's of CDH families and researchers around the world and with the other organizations of ACDHO, we are so, so proud to announce that our years of hard work will be able to benefit the CDH community even more.

This site will be FREE for ALL to use. CHERUBS does not wish to be paid for it's use or to "own" or trademark Congenital Diaphragmatic Hernia Research. You do not have to be a member of CHERUBS to participate. ALL CDH families, organizations, researchers and the general public will be allowed to access and use this information and research. All we care about and want is finding the cause, prevention and best treatment of CDH.

This is only just a teeny tiny bit of what this CDH Research Study will include. There will be 4 separate studies:

1. CDH Patient Information - created from CHERUBS membership form data. This is our basic patient information, some of which is shown above. Pregnancy history, CDH diagnosis, side of CDH, type of CDH, hospital stay, CDH repairs, other birth defects, complications, etc.

2. In Depth CDH Research Survey - 12 very detailed pages of maternal exposures during pregnancy, pregnancy histories, family medical histories, chemical exposures, birth defects, genetic issues, lung capacity, long-term therapies, pregnancy testing, labor and delivery, CDH repairs, complications and much, much more.

3. CDH Support Survey - survey on how CHERUBS can better help CDH families and what other services are needed

4. CDH Researchers Survey - taken from CHERUBS membership forms for medical professionals, this helps doctors and nurses to better help CDH patients and their families.

We are very, very excited about this project and look forward to unveiling it soon!

Want to read more about the type of data we're researching? You can view our 2000 CDH Research Survey Results at

Over the next few weeks we will post more sneak peaks! Stay tuned!!

Awareness Ribbons

Awareness is so important. It educates people and spreads knowledge. It encourages people to do something about a cause! Which is why CHERUBS, and many other organizations, are so adamant about raising awareness freely. For many years now, organizations and causes have used awareness ribbons to help promote action. Below is a partial list of ribbon colors and the causes associated with them:

Pink / Hot Pink (most use both): Breast Cancer, Cleft Palate, Nursing Mothers, Inflammatory Breast Cancer

Red: AIDS / HIV, Hypertension, MADD, DARE, Alcohol Abuse, Drug Abuse, Epidermolysis Bullose, Love, Evans Syndrome, Pro-Life, Strokes, Heart Disease, Heart Defects,

Orange: Multiple Sclerosis, Hunger, Leukemia, Skin Cancer, Work Zone Safety, Agent Orange Exposure, Kidney Cancer, Highway and Road Worker Memorials, Reflex Sympathetic Dystrophy, Feral Cats, Cultural Diversity, Racial Tolerance, Self Injury

Peach: Endometrial Cancer, Uterine Cancer, Alpha-1 Antitrypsin Deficiency

Yellow: Adoptive Parents, Spina Bifida, Missing Children, Suicide Prevention, Support our Troops, Bladder Cancer, Liver Disease, Liver Cancer, Hydrocephalus, Carbon Monoxide Poisoning, Victorian Bushfire Disaster of 2009, Genocide Awareness, Hope, Boycott Aruba (Natalee Holloway), Hydrocephaly, Endometriosis, Sarcoma

Green / Jade (most use both): Tissue Donation, Organ Donation, Organ Transplants, Bone Marrow Transplants, Frobrdysplaisa Ossificans, Depression, Bipolar Disorder, Mental Health, Mental Illness, Eye Injuries, Tourettes Syndrome, Neural Tube Defects, Cerebral Palsy, Cornelia de Lange Syndrome, Progressiva, Save Darfur, Stem Cell Research, Mitrochondrial Disease, Glaucoma, Von Hoppel Lindau, Driving Safety, Lessencephally, Homeophathy Awareness, Asian and Pacific Islander campaign by ALC, Craniosynostosis

Lime / Neon Green (most use both): Open Adoption Records, Mental Health, Non-Hodgkins Lymphoma, Lymphoma, Lyme Disease, Muscular Dystophry, Ivemark Syndrome, Sandhoff Disease

Light / Mint Green (most use both): Pelvic Pain, Spinal Muscular Atrophy, Spinal Diseases, Human Papilloma Virus

Turquoise / Teal (most use both): Ovarian Cancer, Uterine Cancer, Cervical Cancer, Food Allergies, Sexual Assault, Myasthenia Gravis, Polycystic Ovarian Syndrome, Agoraphobia, Stress Disorders, PTSD, Obsessive-Compulive Disorder, Dissociative Identity Disorder, Fragile X, Batton Disease, Tourette's Syndrome, Substance Abuse, Native American Reparations, Addiction Recovery, Interstitial Cystitis, Genecologic Cancer

Light Blue / Baby Blue: Prostate Cancer, Men's Healthy, Trisomy 18, Edward's Syndrome, Shprintzen Syndrome, Thyroid Disease, Klinefelter's Syndrome, Velo-Cardio Facial Syndrome, Addison's Disease, Scleroderma, Hyperaldosteronism, Behcets Disease, Graves Disease

Blue: Child Abuse Prevention, Free Speech, Crime Victim Rights, Water Quality, Colon Cancer, Malaria, Syringomyelia, Neurofibromatosis, Sex Trafficking and Slavery, Cyclic Vomiting Syndrome, Cri du Chat Sndrome, Chronic Fatique Syndrome, Interstistial Cystistis, Bracial Plexus Injury, Epstein-Barr Virus, Steven Johnson Syndrome, Hurricane Support, Short Bowel Syndrome, Education, Acute Respiratory Distress Syndrome, Primary Immunodeficiency Disease, Sensory Processing Disorder, Police Officers Lost In The Line of Duty, Leukodystrophy, Myositis, Arthritis, Erb's Plasy, Ankylosing Spondylitis, Water Safety

Purple: Domestic Violence, Religious Tolerance, Animal Abuse, 9/11 Victims, Pancreatic Cancer, Chron's Disease, Colitis, Cystic Fibrosis, Leimyosarcoma, Macular Degeneration, Sjogren's Syndrome, Unattended Children in Cars, Pediatric Stroke, Arnold Chiari Malformation, Pagan Pride, Cancer Survivor, Alzheimers, ADD, ADHD, Homelessness, Lupus, Fibromylagia, Pancreatic Cancer, Sarcoidosis, Worker's Memorial Day

Lavender / Violet (most use both): Cancer Awareness, Epilepsy, Hypokalemic Periodic Paralysis, Rett Syndrome, Hodgkins Lymphoma, Foster Care, Infantile Spams, Hysterectomy, Testicular Cancer

Black: Grief and Mourning, Melanoma, Anti-Gangs, Anti-terrorism, Narcolepsy, Primary Billiary Cirrhosis, Amish Support, Gun Control, Accidents

White: Innocence, Terrorism Victims, Peace, Right to Life, Pro-Life, Diabetes, Sexual Assault of Students, Scoliosis, Anti-Stalking, Poverty, Marriage Equality, Gay Teen Suicide Prevention, Holocaust Remembrance, Post Partum Depression, Anti-Child Pornography, Bone Disease, Bone Cancer, Retinal Blastoma, Blindness, Adoption, Men Working To End Violence Against Women, Multiple Hereditary Exostoses

Gray: Brain Cancer, Parkinson's, Allergies, Asthma, Diabetes

Brown / Copper (most use both): Anti-tobacco, Colorectal Cancer, Menkes Disease, Anti-Green Movement

Maroon / Burgandy (most use both): Hospice Care, Multiple Myeloma, Cesearian Sections, Headaches, Migranes, Adhesions, Thrombophilia, Meningitis, Polio Survivors, Amyloidosis, Hemangioma, Children Misdiagnosed / Undiagnosed with Rare Disorders, Blood Factor Disorders, Hirschsprung's Disease, Hughes Syndrome,

Silver: Brain Disorders, Elderly Abuse, Anti-Stalking, Children with Physical Disabilities / Learning Disabilities

Pearl: Lung Cancer, Lung Disease, Multiple Sclerosis, Mesothelioma, Emphysema, Waldenstroms's Macroglobulinemia

Gold / Amber: Appendix Cancer, Missing Children, Childhood Cancer, COPD, Emryonal Rhabdomysarcoma, Breast Feeding

Fuchia / Magenta (most use both): Pro-Life, Feminism, Breast Cancer Awareness

Clear: Lung Cancer, Lung Disease

Puzzle: Autism, Asperger Syndrome

Rainbow: Gay Pride, Gay Rights, Same Sex Marriages

Pink and Baby Blue: Birth Defects, Pregnancy and Infant Loss, SIDS, Breast Cancer, Baby Safe Haven, Amniotic Fluid Embolism, Hyperemesis Graviduram, Group B Strep

Red and White: Aplastic Anemia, Squamous Cell Carcinoma

Red and Yelow: Hepatitis C Virus, Teen Abstinence

Red and Blue with a Heart: Congenital Heart Defects

Red, White and Blue: 9/11 Victims, Patriotism, Fireworks Safety

Blue and Yellow: Downs Syndrome, Fatty Oxidation Disorders, Designated Drivers

Green and Blue: Intracranial Hypertension

Green and Purple: Hospice and Pallative Care

Purple with Red Rose: Cystic Fibrosis

Purple and Blue: Childhood Stroke, Rheumatoid Arthritis

Yellow and Purple: Chemical Injury

Black and Purple: Paranormal Awareness

Blue and Orange: Pediatric Bipolar Awareness

Green and Orange: Dual Diagnosis, Ritual Abuse

Maroon / Burgundy and Orange: VA Tech Tragedy

Lime Green and Turquoise: Adult Stem Cell Disorder

Lavender / Orchid and Orange: Psoriasis

Teal / Turquoise and Pink: Hereditary Breast Cancer, Gynecology and Breast Cancers

Pink and Gold: Phyllodes Tumors

Pink and Black: Bone Marrow Donor, Loss of a Daughter

Baby / Light Blue and Black: Loss of a Son

Black and White: Carcinoid Syndrome Cancer, Anti-Racism, Anti-Corruption, Vaccine Danger

Blue and Silver / Gray: Living with Cancer

Gold and Silver: Hearing and Ear Disorders and Diseases, Deafness

Gold and Black: Platelet Donor

Ivory and Burgandy - Oral Head and Neck Cancers, Oral Squamous Cell Carcinoma

Ivory and Lace: Osteoporosis

Navy Blue and White: Amyotrophic Lateral Sclerosis, Lou Gehrig's Disease

Red and White: Lymphoma, Leukemia

Blue and White: Columbine Tragedy, Teen Cancer

Orange, Green, Blue, Purple and Yellow: STD Awareness

Yellow, Lime / Neon Green, Orange, Aqua / Turquoise, Hot Pink: Myelodysplastic Syndrome

Teal / Turquoise, Blue and Pink: Tyroid Cancer

Orange and Red: Myeloproliferative Disorders

Red and Black: Murder Victims, Self Injury

Blue, White and Pink: Parental Alienation Syndrome

Silver, White, Light / Baby Blue and Pink: Congenital Hyperinsulinism

Pale Pink, Baby Blue, Light Yellow with White Clouds - CONGENITAL DIAPHRAGMATIC HERNIA

And of course the official awareness ribbon of Congenital Diaphragmatic Hernia which happens to be voted on by members of several CDH organizations and CDH families from around the world! Just as CDH is a special cause, these cherubs are special - so is our ribbon!

Isn't it wonderful how all these causes work together with millions of people around the world -using the same terms, the same ribbons - without trademarks or harassment or working towards anything but the GREATER GOOD!!! CHERUBS is so incredibly proud to work with the dozens and dozens of CDH organizations and hospitals to raise Congenital Diaphragmatic Hernia Awareness, Research and Support!

Those listed with 2 shades of the same color are posted as they are posted on several sites, including Wikipedia (how they listed themselves). This list was created by listings combined from several sources including Wikipedia, for-profit stores and disability sites.

Sunday, May 17, 2009

Today is the Congenital Diaphragmatic Hernia Day of Prayer and Education

We ask that EVERYONE says a prayer (or make a wish) and tell someone about CDH today! Please take just 5 minutes to help educate people and to pray / wish for the end of this horrible birth defect.

Tell just 1 person about CDH and what it is. Do this in person, through an e-mail, blog post, FB comment... anything. Just tell at least 1 person about congenital diaphragmatic hernia.

7:00 pm, whatever time zone you're in... light a candle... say a prayer (or make a wish)... for all CDH babies and families.

We don't just wish for it or want it - we believe the end of CDH and are working hard to make it happen!

Today is the Congenital Diaphragmatic Hernia Day of Prayer and Education.

1000's of people around the world are joining in today, working together against CDH. CDH families, friends, doctors, nurses, and members of the general public are participating. Many CDH organizations are participating. This day is for ALL those affected by CDH.

It is not our hope that someday CDH will end - Hope is wishing for whatever you want the outcome to be. Faith is knowing and believing that someday CDH will end. We don't need hope - we have faith. Someday the cause and prevention of CDH will be known and no more babies and families will suffer from this horrible birth defect.

Monday, May 11, 2009

May 17, 2009 - Congenital Diaphragmatic Hernia Day of Prayer & Education

May 17th is almost here! This day is set aside to say a prayer (or make a wish) for the end of Congenital Diaphragmatic Hernia. CDH is a devastating birth defect that has struck more than half a million babies since 2000. That's a baby every 6 minutes diagnosed with CDH! 50% of these babies do not survive and the cause is not known. More awareness and research is desperately needed!!!!

On May 17th please take a moment to say a prayer (or make a wish) that the cause and prevention of CDH is found. There is power in prayer (and wishes)! And please tell at least 1 person about CDH to educate them about this birth defect. Just 1 person (or more!).

How else can you help?

Ask your church or other group to include info about CDH in their programs for that day. Attend an event. Wear a CDH ribbon, wear a shirt or other logo item. Hand out buttons. Release balloons. Send info to your family and friends. Post on your blogs and web sites. Post on your Facebook or Myspace account. Get more friends to join this event!


May, 2009 Events

March for Babies – May 16 in San Antonio, TX. Join CHERUBS member Karen Myers as she marches in memory of her children Kaleigh and William and raises awareness and funds for the March of Dimes.

Peyton’s Promise – May 16 in Sea Isle City, NJ to raise money for the Children’s Hospital of Philadelphia CDH Research fund. For more information you can visit

Michigan Member Bowl-a-Thon - May 17 in Flint, Michigan. You can reach Barb at or 810-845-8480

Day of Prayer for CDH - May 17 around the world! You can reach Dawn at or 919-610-0129 or visit our blog at for more information

North Carolina Get-Together for members of CHERUBS - May 17 at Pullen Park in Raleigh, NC. You can reach Dawn at or 919-610-0129.

North Carolina Balloon Release - May 17 at Pullen Park in Raleigh, NC. You can reach Dawn at or 919-610-0129.


Official Congenital Diaphragmatic Hernia Awareness Ribbon buttons!

100 for $10 - that's a lot of CDH Awareness! Great project for May 17th - CDH Day of Prayer and Education!

This is the OFFICIAL Congenital Diaphragmatic Hernia Awareness Ribbon as voted on by CDH families themselves. It is not owned by anyone, there are no trademarks or copyrights to it and it is not used by any other cause. It is the CDH Awareness Ribbon recognized by 1000's of families around the world, Wikipedia and the members of the Alliance of Congenital Diaphragmatic Hernia Organizations, which is a group of dozens of CDH organizations, sites and researchers.

CHERUBS does not make any money off of your orders for buttons, not 1 cent! We just want everyone to raise awareness!!!

You can order other CDH awareness items at - a small percentage of the purchases at our cafepress store does go to CHERUBS.

It's all about raising CDH Awareness and hoping for an end to this devastating birth defect!

Thank you, on behalf of all CDH families!

Dawn M. Williamson

CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support
3650 Rogers Rd #290, Wake Forest, NC 27587

Wednesday, May 6, 2009

God Bless The Grieving Mother

For 50% of families affected by Congenital Diaphragmatic Hernia, Mother's Day is horrible. They are the 50% whose babies did not survive CDH. The 50% who will not be receiving potted daisies in dixie cups or handprint flowers made out of construction paper. The 50% whose children watch over them instead of the other way around. Please keep them all in your prayers this Sunday. Hold your child a little tighter, thank your lucky stars and say a prayer for those moms whose hearts are breaking.

"God Bless The Grieving Mother"

God bless the grieving mother...
In January as the snow flakes fall...
And as a new year dawns...
For her memories will comfort her...
Through winter, spring, summer, and fall.

God bless the grieving mother...
In February during the month of love...
She sends her hugs..on the wings of a dove...
And her kisses are blown to the moon above.

God bless the grieving mother...
In March and on St Patricks Day...
A beautiful rainbow...a symbol of hope...
Which colors her a magical way.

God bless the grieving mother...
On Easter In April as she stops to pray...
Thanking God for the gift of everlasting life...
Knowing she will be reunited someday.

God bless the grieving mother...
On Mothers Day and thru the month of May...
Whose memories are like threads of gold...
For they will never tarnish....or go away.

God bless the Grieving mother...
In June as her tears fall like the rain...
Please comfort her...and give her strength
and peaceful days to help ease the pain.

God bless the grieving mother...
In July as the fireworks light up the sky afar...
Just like her memories light up her heart...
And she wishes upon an evening star.

God bless the grieving mother...
In the sun shines through...
Who's life moves on...thru ups and downs..
Whose heart is so tender and true.

God bless the grieving mother...
In September as the leaves turn and fall...
Her childs life forever etched in her heart..
Her childs name entered on the memorial wall.

God bless the grieving mother...
In October...with the harvest colors all around....
Please guide her on her journey of grief...
and keep her safe and sound.

God bless the grieving mother...
In November...a time to give thanks and pray...
Who is so thankful for each precious memory..
But wishes with all her heart...just for one more day

God bless the grieving mother...
In December as Christmas nears...
Please bless her with the gift of peace...
And many great friends to help dry her tears.

God bless the grieving mother...
Each day throughout the year...
As seasons come and go...
And time unfolds...
Day by day...
Month by month...
Year by year...
and especially today...on this Mother's day.

Copyright © April 2001 Written by :
Laura/Heavenly Lights Childrens Memorial
Library of Congress TX5-627-966

Caleb's Birthday CDH Information Packets

To celebrate her son Caleb’s first birthday on November 5, 2008, Leah Koehn from Wyoming created 35 doctor and parent CHERUBS packets to give to hospitals and doctors in the Steamboat Springs, CO and Denver, CO area. Caleb was born at 39 weeks with an undiagnosed left congenital diaphragmatic hernia. Caleb had a successful hernia repair and is now healthy.


CHERUBS subsists off of donations. Though we are trying, we currently are not receiving any grant funding and all donations go to help us continue our work in research and offering services and information to families and medical-care providers of children born with Congenital Diaphragmatic Hernia. We are run strictly by volunteers, no one gets paid for working for CHERUBS, so every penny of your donation will directly help families. CHERUBS is an IRS recognized 501(c) Non-Profit Organization and all donations are tax-deductible.

Monetary Donations
Printing Sponsors
Event Sponsors
Adopt A Hospital Sponsors
2-pocket folders
Postage Stamps
Printing Paper
CDH Awareness Ribbon Pins
Copies of “Stories of Cherubs”
CDH Education Posters
CDH Awareness Bracelets
Journals / Notepads*
Baby Booties*
Baby Blankets / Quilts*
Baby Caps / Hats*
White / Natural Cotton Tote Bags*
Small bottles of lotion*
Small bottles of hand sanitizer*
Travel Kleenex*
Disposable Cameras*
Newborn Button up T-Shirts*
Restaurant Vouchers*
Gas Cards*
Kid's Books*
Puzzle Books*

*for Gabe's Gifts bags for new and expectant parents

If you can donate any of these items, please send them to:

3650 Rogers Rd. #270.
Wake Forest, NC 27587

Donations are tax-deductible and much appreciated to help us continue to help CDH families!

So you say you just want to raise CDH Awareness? Here's a challenge for you! ;)

Don't care what group does what to who?

Don't want to know the details or drama of what's going on?

Don't want to hear about other problems when you have enough of your own dealing with your CDH baby or grief?

Don't care about lawsuits, threats, perjury, audits, blah, blah, blah....?

You just want to raise as much CDH Awareness as possible?!!!

That's ok!!!!!!! :) In fact, that's GREAT!!!!!

That means that you will want to be a part of May 17th since it's for ALL organizations and CDH families and you truly want to just raise awareness!!!!!! ;)

It's not about one group, one person or even raising money. It's about raising CDH awareness!!! It's about saying a prayer (or making a wish) for the end of CDH. Because that's the goal, isn't it?

* You don't have to go anywhere *
* You don't have to spend any money *

Just say a prayer (or making a wish) for the end of CDH and tell at least 1 person about CDH. That's it! How easy is that? (You can do more if you wish - visit the link for details!)

No drama. ALL organizations can participate! No trademarks. No one has to ask permission to join in. No one has to pay anyone for anything. Use the ribbon as much as you want. Sell it on anything you want for any group you want - we don't care!!! Just raise CDH awareness!! :)

Too many babies are dying from CDH. Too many families are devastated. Drama and politics and money should not be stopping awareness if that's what's needed to help these children!

So how can you possibly say no? ;)

I hope to see everyone participating in this amazing day for these babies!!!!! :D

Please join the event and invite your family and friends!!!!

“Our Heartbreaking Choices” by Christie Brooks

“Our Heartbreaking Choices”
by Christie Brooks, mom to cherub Madison Brooks

Pregnancies aren’t always perfect. Prenatal testing can reveal life-threatening issues with the baby’s health, which can leave a parent contemplating the unthinkable- ending the pregnancy. Christie Brooks, a CHERUBS member, made the heartbreaking decision to interrupt her pregnancy in 2003 when her baby was diagnosed in utero with a left-sided diaphragmatic hernia. Through online support networks she was able to connect with other mothers who made the same agonizing decision, but for a variety of different anomalies. Together they put their stories in a book and self-published it last October. The book, “Our Heartbreaking Choices,” contains the personal stories of 46 women who interrupted their much-wanted pregnancies for medical reasons. The purpose of the book was to share their stories in the hopes of helping other parents who have undergone a similar loss to feel less alone, less isolated, and less stigmatized.

This book is available on

**CHERUBS is not a pro-life or pro-choice organization. Our mission is to help all CDH families and make sure that they have all the information that they need to make informed choices

Tuesday, May 5, 2009

CHERUBS Celebrity Spokesperson - Meet Rene Couret

Rene Couret is a plus-size model, actress, entrepreneur and student, currently residing in Southern California. She is studying Musical Theatre and American Sign Language. In her spare time, Rene runs several websites including a CDH birthing options activism site. She also loves giving advice on vegetarian healing diets, whole food nutrition, and self-image issues. Rene has appeared in the movie “Phat Girlz”, appeared in many stage productions and is very involved in Hollywood’s “Love Your Body Day”.

Rene’s son ,Gregory Zion Couret ,was born August 3, 2004 with a Morgagni (or right-sided) Congenital Diaphragmatic Hernia. When Gregory died at six months of age, it was a bittersweet experience. Rene felt it was her greatest source of pain but he was also her greatest source of inspiration.

When Gregory was born he was rushed right away to the NICU. He had a right-sided hernia, which causes more trouble due to the liver piercing into the right lung and pushing over the heart. He was only breathing about 30% on his own and he needed the assistance of a Ventilator in order to keep him alive. He was placed on ECMO for one week and had emergency surgery to fix his diaphragm after a small brain bleed. He had six surgeries and was taken off and on breathing support more than ten times. In the end his lungs just could not handle anymore and his heart gave up on him. My son was supposed to come home right around Thanksgiving in 2004, but he got an infection and had to heal all over again. My family and I prayed hard, stayed up nights visiting him, and had as much faith as we possibly could. He went through ups and downs and fought his best, but by the time he was six months old he passed away. After my Gregory passed away, I felt as if something was wrong with me and I thought I did something wrong. Maybe I could have done more, or maybe it was karma sneaking up to bite me. I went through many ups and downs in my mind before I could just accept what happened and move on. It is still a process and two years later I have days when the thoughts cripple me and there are times where I feel that it never even happened.

CHERUBS Celebrity Spokesperson - Meet Wendy Petty

Wendy is a celebrity local to the Raleigh - Durham, NC area. I personally met Wendy a few years ago at Duke Gardens and subsequently helped to photograph her wedding (I was a photography assistant at the time). Last year we were looking for volunteers for our Angel Ball and Wendy responded to our ad. She not only volunteered for our Angel Ball but our Golf Tournament as well and is now a celebrity spokesperson for CHERUBS! And if that wasn’t wonderful enough, Wendy, who is also Mrs. Durham County, NC is now using CDH as her pageant platform! We can say we met Wendy at the very beginning of our celebrity career on her way to the top - and on the way to the top Wendy is definitely going!

Some of Wendy’s career achievements so far; Film appearances in “Racing Dreams”; “Absence With Pictures” and “April Fools Day”. She was in Chris Daughtry’s music video “Home”. She has appeared on television on the shows “One Tree Hill”, “Paris Hilton’s BFF” and “Whittaker Bay”. She’s also done quite a bit of local commercials and promotions including playing Diamond Barbie. She is currently on the Nascar circuit as an spokesperson. She is Mrs. Capitol City 2008 and Mrs. Durham County 2008 and has represented North Carolina and local towns in the Mrs. NC America 2007, Mrs. North Carolina America 2007, Mrs. Granville County 2007 pageants and was a Miss Hawaiian Tropic Final.. With a huge heart, Wendy is very active with many local charities, including Duke’s Children’s Classic.. Wendy will be at our 2009 Angel Ball!

To learn more about Wendy you can visit her site at

CHERUBS Spring 2009 Newsletter Issue

CHERUBS latest newsletter issue is out!

Event information, 5 CDH funds, new stories of cherubs, Adopt A Hospital and much, much more!!!

CHERUBS New Family Assistance Fund

CDH Family Assistance Fund – A majority of this fund will go to help families with travel expenses such as airline tickets and gas. It will not go to lodging because CHERUBS highly recommends the *free* lodging available at Ronald McDonald Houses. Families will submit confidential applications to assistance and a committee will consider each request.

Our goal is to make sure that all CDH families can afford to get to their cherub’s medical center and have a place to stay so that they can concentrate on their children instead of travel worries. We hope to assist a family through this fund by this fall.

The remaining small percentage of this fund will go to Gabe’s Gifts, a new program that helps new and expectant families by supplying them with items needed. This project will start by September, 2009!

  • $20 can cover 1 gift bag for a CDH family from Gabe's Gifts
  • $20 can cover 1 family's gas for a day
  • $50 will cover a gas card for a family going back and forth to the hospital
  • $500 can cover a plane ticket for 1 family member

What is CDH?

Congenital Diaphragmatic Hernia (CDH) occurs in approximately 1 in every 2,500 births (1,600 cases in the U.S. each year). The cause of CDH is not yet known. The diaphragm is formed in the first trimester of pregnancy and controls the lungs' ability to inhale and exhale. CDH occurs when the diaphragm fails to form or to close totally and an opening allows abdominal organs into the chest cavity. This inhibits lung growth.

Every patient diagnosed with CDH is different. Survival rates depend on the types and number of organs involved in the herniation and the amount of lung tissue available. There are many surgical procedures and complications that may or may not occur with each individual, including in utero surgery.

Roughly 50% of babies born with CDH do not survive. Of the 50% that do survive, most will endure long hospital stays, feeding issues, asthma and other problems. A few of the survivors suffer from severe long-term medical issues.

CDH occurs as frequently as Spina Bifida and Cystic Fibrosis, yet there is very little research being done and virtually no media coverage.

CHERUBS CDH Research Fund

CDH Research FundCDH Research Fund – to pay for the $1000 a year cost of research database hosting and to raise money for research organizations such as the International CDH Study Group – unless a request is made to go a specific hospital. The CDH Study Group is a collective group of over 30 hospitals around the world specializing in CDH research. We chose to support groups like this one because we know that every cent will go directly to research on Congenital Diaphragmatic Hernia and research will be brooder and more advanced when collaborating with dozens of hospitals and researchers together.

CDH Research Site - funds for the software needed to create and maintain secure database hosting for our CDH research database. This database includes information on over 2400 CDH patients and medical care providers - offering a very unique opportunity to research the cause, prevention and best medical treatments for Congenital Diaphragmatic Hernia. Such software and off-site security that is needed for an undertaking this large costs approximately $1000 per year (thanks to a grant from QuestionPro). Rather than take funds out of our very small operating cost budget, we are appealing to members and the public to help fund this research venture. Site maintence, design and statistics is being done for free by volunteers. $1000 per year is needed solely for the database design and secure hosting, which is needed to follow federal privacy and HIPPA laws.

This web site is a project of CHERUBS - The Association of Congenital DIaphragmatic Hernia Research, Awareness and Support. It is supported by volunteers and funding through CHERUBS, a 501(c)III Non-Profit Organization. Donations and sponsorships are greatly encouraged and appreciated to help keep this CDH Reseach site continuing, growing and leading the search for the cause and prevention of CDH. CHERUBS Congenital Diaphragmatic Hernia Research Survey is the combined efforts of over 2000 CDH families and medical professionals. It takes information on the medical, family and exposure histories of CDH patients and compares data to look for the cause, prevention and better treatement of Congenital Diaphragmatic Hernia. Participation is voluntary, anonymous and free to all CDH families and medical staff. Data can be tabulated live for research and reference purposes.

Congenital Diaphragmatic Hernia (CDH) is a birth defect that occurs when the diaphragm does not fully form, allowing organs to enter the chest cavity preventing lung growth. CDH strikes 1 in every 2500 babies, of all races, religious backgrounds, and financial status - no matter how well the prenatal care.

Nearly 4 million babies are born in the United States each year. This means that approximately 1600 babies are born with CDH each year - in the U.S. alone! There are more babies born with CDH than with Cystic Fibrosis (1 in 3900) and it's almost as common as Spina Bifida (7 in 10,000) - yet, you probably have never heard of it until it affected someone that you love. CHERUBS is working hard to raise Congenital Diaphragmatic Hernia Awareness!

The cause of Congenital Diaphragmatic Hernia is not yet known.

50% of babies born with CDH do not survive and sometimes the remaining 50% have to overcome very difficult medical complications. Many CDH babies have minor lasting health problems such as feeding aversions, asthma, scoliosis, or short-term oxygen dependency. A small number have major lasting health problems such as ventilator dependency, brain damage, or hearing problems. Many patients have no long-lasting medical problems at all other than a scar from the CDH repair. CDH can occur alone or with other birth defects, and rarely, it occurs as part of a syndrome.

CHERUBS New CDH Scholarship Fund

CDH Scholarship Fund – for CDH survivors and siblings. Families can raise money to give scholarships in honor / memory of their cherubs.

We hope to award our first scholarship in 2010.

An application form will be posted soon.

CHERUBS New CDH Awareness Fund

CDH Awareness Fund – this fund will help raise awareness of Congenital Diaphragmatic Hernia through balloon releases, giving away free CDH ribbon buttons and brochures and other items. It will also cover advertising costs, billboards, video production and much more.

  • A donation of $7 will sponsor 1 CDH Education Poster
  • A donation of $20 will sponsor 100 CDH Awareness Ribbon Buttons
  • A donation of $100 will sponsor a Balloon Release
  • A donation of $400 will sponsor 5000 CDH Awareness Brochures
  • A donation of $3000 will sponsor a billboard advertisement

CHERUBS New CDH Family Support Fund

CDH Family Support Fund – this fund covers all support services, including our web sites, newsletters, conferences, New Member Packets, get-togethers and other general operating costs. CHERUBS does a lot for CDH families and the CDH community and we incur quite a few costs during so. Just 1 newsletter mailing is now over $3000 for printing and posting with so many members. Our conferences are also expensive. Our monthly expenses are several hundred dollars for ink, postage, web site hosting fees, fax number, etc. It takes a lot to fund an organization with almost 3000 members. Remember, no one at CHERUBS gets paid and we have no office so every penny directly helps CDH families. And all of our services are FREE so we do charge membership fees. Only 2% of our members donate annually so we depend on public donations quite a bit. And the occasional grant as well.

  • $1 will cover 1 2-pocket folder
  • $1 will cover 1 copy of our Parent Reference Guide
  • $5 will cover 1 newsletter printing and US postage
  • $10 will cover 1 New Member Packet
  • $50 will cover our annual non-profit state registration fee
  • $50 will cover envelope costs for 1 year
  • $50 will cover our volunteer software for 1 month
  • $100 will cover staples, paper clips, glue, etc for 1 year
  • $100 will sponsor 1 hospital with CDH info for 1 year
  • $125 will cover web site hosting fees for 1 month
  • $300 will cover 1 local get-together
  • $400 will cover printing 5000 brochures
  • $500 will cover outside programming fees
  • $2000 will cover non-newsletter postage fees for 1 year
  • $3000 will cover 1 newsletter printing and mailing
  • $5000 will cover 1 international member conference