CHERUBS “Adopt A Hospital” Program

Would you like to help families affected by Congenital Diaphragmatic Hernia? Would you like to do something in honor or in memory of a cherub? CHERUBS has created a new program that will soon be helping CDH families across the country.

There are 2 options to our Adopt A Hospital program:

Adoption Plan #1 – You order / print out the list of items below and take them to the hospital. You also become a CHERUBS Hospital Ambassdor for new CDH families at that hospital and you periodically refurnish the materials.

Adoption Plan #2 – You make a $100 donation to CHERUBS and we order and put together the materials and send them to the hospital in honor / memory of your cherub.

CHERUBS Adopt A Hospital Care Package Includes:

1 copy of “Stories of Cherubs” Volume I
1 copy of “Stories of Cherubs” Volume II
1 CDH awareness poster
20 Parent Reference Guides
50 CHERUBS CDH Info Brochures
50 CDH Awareness Ribbon Pins
10 copies of our latest newsletter

Each item (except the CDH ribbon pins) is labeled with a sticker that says “Donated in honor of ________” or “Donated in memory of _________”

These items are then available to all CDH parents admitted into these hospitals. Upon joining CHERUBS, new parents will soon receive more information and support through our Gabe’s Gifts program.

These items are an invaluable source of support and information for families affected by Congenital Diaphragmatic Hernia. Because there are so many hospitals, CHERUBS cannot possibly afford to donate to all hospitals and we are inviting our members and the general public to help us to help CDH families.

If you would like to Adopt A Hospital, please contact us at volunteer@cherubs-cdh.org

2009 International Congenital Diaphragmatic Hernia Conference

Don’t forget to register!

It looks like we’ll have over 100 in attendance this year from at least 5 countries! Plus, amazing guest speakers including Meaghan Russell from Boston Children’s (who will be also be helping families to participate in CDH Research!) and Kevin Lally from the CDH Study Group to give us all the latest news on CDH research and treatments. Also, leaders from several CDH organizations and sites will be there as well!

There will be round-table discussions for parents of survivors and grieving parents, as well as CDH survivors. Entertainment for the kids, tons of Congenital Diaphragmatic Hernia awareness items and information, a pizza party on the first day and much more! It’s going to be an incredible CDH conference – make sure not to miss it!

http://www.cherubsconference.org/

CHERUBS 2009 International Member Conference

Finally, it is all finalized and we have the hotel information! I will be posting more information (driving directions, etc) soon. The Holiday Inn Select San Antonio Airport 77 NE Loop 410 San Antonio, TX 78216 210-349-9900 http://www.hisairport.com CHERUBS Room Rate is $89.00 CHERUBS Room Rate + Breakfast for 2 adults is $97.00 Breakfast is not free with your room! I’m sorry, we tried, but this is the best we can do! Feel free to bring milk, cereal, etc if you want to save money! I think kid’s do eat free in the dining room (per their site). Rooms come with coffee makers, microwaves and mini fridges. There is a pool, restaurant, bar and fitness center. Free internet. To receive the CHERUBS discount you *MUST* tell them you are CHERUBS members when you book the room and you must book it for July 22-25th or longer. We have to book 25 rooms to get our discounts and freebies so please, please, PLEASE stay at this hotel!!! It’s definitely the best value around anyway!!! 🙂 I was planning on rooming myself with another mom but because we need to book those rooms I’m now booking my own room. I know several of you are rooming but please reconsider if you can afford it (we totally understand if you can’t! We just want you to attend either way!). We worked really hard to find a decent, safe hotel that was inexpensive and we hope we did ok. It’s not glamorous but then, we didn’t want our members paying $150 a night to stay on the Riverwalk. This hotel is near the airport and includes an airport shuttle and will also go anywhere in a 2 mile radius of the hotel (that’s not including the Riverwalk or Sea World, but does include the malls). They have been very generous to us and are allowing us a FREE suite for the kids during the conference and are only charging us a cleaning for the Meeting Room… that’s saving us $1000’s!!! So a huge thank you to the Holiday Inn Select!!! We’re working on the conference web site and brochure, as well as locking in our 3 speakers and kid’s entertainment. Tentatively, here’s our schedule: July 22, 2009 – Check In July 22, 2009 6:00 pm to 9:00 pm – Pizza Party and Introductions July 23, 2009 8:00 am to 12:00 noon – Conference July 24, 2009 8:00 am to 12:00 noon – Conference July 25, 2009 8:00 am to 12:00 noon – Conference July 25, 2009 – Check Out That gives everyone the afternoons & evenings to go play. Our guest speakers will speak on CDH Research, Genetics and Repair – including the head of the CDH Study Group, Dr. Lally. Round table discussions will be held for both parents of survivors and grieving parents. There will be free babysitting during conference hours for the kids (volunteers needed!) and entertainment for them too (clown, magician, etc). There is no conference fee, you just have to be a member of CHERUBS to attend! You are responsible for your own lodging, food and other travel costs. We are working on discount tickets for the local attractions. I have to say that the San Antonio Tourist Bureau has been AMAZING!!!! They will be sending all of our member info on the conference and San Antonio at no cost to CHERUBS!!! 🙂 So far it looks like there will be about 150 in attendance!!! We have members coming in from Australia, Mexico, Great Britain, Canada and Italy as well!!! This is truly a CHERUBS INTERNATIONAL Conference!!! 🙂 We hope to see you all there!!!

CDH Research Survey Software

CHERUBS is thrilled to announce that the CDH Research Survey Software Company has granted our charity a discount to help our cause! Instead of the $6000 a year that we expected to pay, QuestionPro.com is allowing us to use their software for just $1000 a year – saving our non-profit organization $5000!!! We are so grateful for the assistance! QuestionPro is the top Research Software On-Line – the one we have been comparing all other software to. We didn’t dare dream that we’d be able to do this research so soon, saving so much money!

Thank you QuestioPro for your generousity and for helping CDH families around the world!

Our CDH Research Site programming will begin next week!

(Repost) CHERUBS – Congenital Diaphragmatic Hernia Organization

CHERUBS – The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support.

www.cdhsupport.org

Here at CHERUBS, we wear many, many hats.

Our first priority are CDH families and they deserve accurate information so that they can make the best decisions for their cherubs. We first published our Parent Reference Guide in 1996, giving parents a list of commonly used medical terminology and what it all means in layman’s terms. Advice from other parents on pumping breast milk or planning a funeral. Songs to play for a baby in the NICU. Information from recent CDH studies. Diagrams of CDH. Correct CDH statistics. An article about CDH written specifically for CHERUBS by a well-respected pediatric surgeon, our Vice-President Lesli Taylor, MD. We make sure that they know infection and pneumonia cost more cherubs’ lives than poor lung function. All of these things for them. Not to sensationalize CDH or gain attention for CHERUBS. But correct information for CDH families.

We give information and support to families. Offering support services since 1995. We created the world’s first CDH web site, chat room, listserv, forums, blogs, newsletter and conference. Families are no longer alone dealing with CDH since 1995. We are proud of the fact that because our group has been so successful, several other CDH groups have spawned from our membership and follow in CHERUBS footsteps. There can never be too much support for CDH families!

Not only do we support CDH families, but we also support other CDH organizations. We have worked with En Stitching Hernia Diafragmatica, Holland’s CDH group, for 10 years. Onno has attended one of our conferences and we enjoyed spending several days with him, hanging out and exploring Disney World after conference hours. CHERUBS Australia and CHERUBS UK now have non-profit status in their respective countries – with our blessing and the sharing of our knowledge. We work with the French and Italian CDH groups. We are strong supporters of Kays Kids, Rainbow of Hope, the Olivia Raine Foundation, Jack Ryan Gillham Foundation and Little Lambs. We worked with many of these organizations to collectively look out for CDH families best interests and fight the Congenital Diaphragmatic Hernia Awareness Trademark so that all CDH families can continue to raise awareness without fear. CHERUBS is very, very proud to be a member of the Alliance of Congenital Diaphragmatic Hernia Organizations which not only includes many CDH support groups but top CDH hospitals and researchers as well – all of us working together to help CDH families.

Our second priority has always been advocacy and awareness and this is reflected in our interviews in over 100 newspaper articles, interviews for television shows such as 20/20, interviews for magazines such as Family Circle and Women’s Day. It is in the events that we have held for the past 15 years, teaching the public about CDH. Rallies and bake sales. Bowl-a-thons and ATV events. Formal balls and golf tournaments. Balloon releases and candle lighting ceremonies. In the 1000’s of web sites that link to CHERUBS and CDH info. In the 1000’s of awareness items we have been offering on our web site since 1997. We advocate for awareness every single day.

In 1997, CHERUBS compiled our first Congenital Diaphragmatic Hernia Research Survey, taking data from parent membership forms and compiling studies. We did this all painstakingly by hand every year until 2000 – when our membership numbers grew so big that we didn’t have the time or the manpower to put together another survey by hand. Our studies were ordered by surgeons and researchers around the world and we have collaborated with several on their own studies. Our results have been submitted for publication to medical journals, co-signed by some of the world’s top CDH surgeons. http://cdhsupport.org/members/dload.php?action=category&cat_id=3

We take our research very seriously and do not submit haphazard statistics or information to parents without checking with medical advisors first. We do our research the hard way – in the research library, talking to researchers, spending weeks going over every number before we release it to the members and public. We do not talk abstractly of CDH research, we do not write articles about the work of others found on the internet, we do not donate $100 to a hospital and call ourselves a research organization. We do actual research. We actually contribute to the CDH research community and have done so since 1997. It has not been easy and we have lost many a sleepless night tabulating data or pouring over medical journals – but our goal has always been to help lead the way to find the cause, prevention and better treatment of CDH.

Now, we are compiling the 2008 Congenital Diaphragmatic Hernia Research Survey Results with the data of over 2500 CDH families. The CDH Study Group now holds the world’s largest database of research information on the diagnosis and immediate medical care of CDH babies. CHERUBS holds the world’s largest database of research information on the family history, neonatal care and long-term outcome of CDH babies. We have always worked together and continue to do so with several projects in the works. Our CDH Research site is under construction and will be ready by Spring, 2009. It will compile CDH research data on the fly and will be available freely to all CDH researchers, families and organizations.

And all this is not easy. CHERUBS was started by 2 CDH parents with no experience but we gained non-profit status within 8 months. We started before there was an internet and without help. We paid our dues and did the hard work and we are so proud of all we have accomplished!

CHERUBS is a charity and is run as such. It puts our cause first – helping CDH parents. We do not look at our organization in the business sense. Charities give. Businesses sell. We do not feel a need for competition or making calculated business plans to make the most money or own the rights to anything. We are not selling anything. We are giving away CDH information freely, raising awareness and offering support. Our “business” plan is created by following our hearts and consciences, not our bank account. This makes it sometimes hard to provide all the services that we would like to give – but in the long run it is what has made us successful in helping 1000’s CDH families and what makes our membership a family.

CHERUBS is still run solely by volunteers. Dawn, our President, volunteers over 40 hours every week to helping CDH families through CHERUBS – while also having a family and running a business and going back to college for medical courses. Our Advisors dedicate a minimum of 20 hours each every week as well, with several also donating over 40 hours of our time weekly. We have an extensive web site with 1000’s of pages, forums, services and 24 / 7 support to families. We have blogs to maintain, Facebook, Myspace, and many other sites we keep updated with CHERUBS and CDH news. Newsletters and research to work on, awareness events year-round, fundraisers, books and more committees than most support groups. We have get-togethers and conferences. We maintain a huge e-commerce shop offering 1000’s of CDH awareness items – all original and designed by hand by us. We also have our accounting, IRS paperwork, state paperwork and legal paperwork. All meticulously done and when we are short on funds and donations – often Dawn or one of the Advisors will personally pick up the tab to make sure that CHERUBS can continue to offer a needed service.

There is dedication and heart in CHERUBS. Everything we do, we do to help families and the CDH community as a whole. We do this with honesty, integrity and honor, making our cherubs proud. We are 1 big CDH family and we offer positive and comforting support to each other. Our focus is, and always has been, helping CDH babies and families.

We wear many, many hats at CHERUBS. And they all look fabulous! 🙂

(Repost) No One Knows

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 2200 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

CHERUBS 2009 International Conference

The date and location have been set! July 23-25, 2009 in San Antonio, Texas! The hotel location will be posted soon.

Our conference include several CDH experts as guestspeakers, round table discussions for both families of survivors and grieving families, pizza party, entertainment for the kids and more!

This year we are expecting about 100 members with families flying in from as far as Australia! We will have at least 4 countries represented at this conference – hopefully many more.

All members of CHERUBS (including CHERUBS UK and CHERUBS Australia) are welcome to attend! If you’re not a member, sign up for free at http://www.cdhsupport.org/members