Long Term Support for CDH

One of the new CDH families wrote a blog post last week that really got me thinking. She (rightfully) complained that she was not receiving enough support after bringing home her cherub from the hospital. That feeding issues and therapies were hard and no one was talking about it and she had no where to turn. That the groups she was in just talked about the pregnancy and time immediately after birth and then she was left on her own to go from there. I could feel her frustration and loneliness in her post. I could feel it, because I’ve been there. And that’s what got me thinking.

This mom isn’t an active member of CHERUBS. She’s one of the new families swayed by drama who’ve been told to stay away from CHERUBS. Why? Because we’re one of the groups standing up against those groups who are hurting families. There are dozens of new and expectant parents who are found through blog searches and “befriended” and “recruited” to join “CDH support groups”. New and expectant parents who are at their most vulnerable, already dealing with CDH and in the midst of thier diagnois or grief and caught up in those agendas, drama, slander and the lies told to keep them away from information and support – that they obviously desperately need. It’s shameful and it’s sickening and it’s sad and it breaks my heart that the CDH road is being made harder for families than easier. Those parents and children deserve so much better!

And then I realized we’re partly to blame for this as well. We don’t post what we offer that much. And we offer a ton – more than all the other CDH organizations put together and for 3 times longer. BUT, we work with 90% of the other CDH organization to make life easier for these families! It’s a global group effort through ACDHO and we’ve helped 1000’s of CDH families over the past 14 years.

When my son was born there was NO SUPPORT. No internet, no googling “Congenital Diaphragmatic Hernia”, no organizations – nothing. When we bought him home, we had no one to turn to. When were in the hospital we had no one to turn to except one other CDH mom. She was a godsend and I love her like a sister to this day – but she will be the first to tell you that she can only give advice and information about the neonatal period. She lost her son at just over a month old – her experiences are very limited and heart-breaking but she can explain about ECMO and CDH repair and vent weaning and staph infections and pneumonia. But she will tell parents – as she told me when Shane came home – that she doesn’t have the experiences to draw accurate advice on how to deal with a CDH baby who lives for a longer time or who does come home. She was all the support I had – and she couldn’t help me.

So I struggled on my own – frustrated, alone and crying almost daily because it’s completely overwhelming to take care of any new baby – much less one who could stop breathing at any moment or for who feeding is a huge ordeal. Don’t get me wrong – I was so BLESSED to bring him home and I knew that – but being home with a sick baby without support was horrible. What I wouldn’t have given to have 1 other CDH parent who had walked in my shoes to tell me it was OK to be upset or disappointed. That it was OK to feel frustrated when my cherub wouldn’t eat. Or it was OK to cry because we couldn’t do the things other parents of healthy children took for granted – like just going to church or shopping around crowds, or not having therapists and nurses in our house all the time, etc. But there was no one.

That’s why CHERUBS was founded. Not in memory of one child. Not in some misguided, grief-stricken, angry quest. Not in some popularity contest. Not in some agenda to profit off of sick children. There was only 1 reason why CHERUBS was founded – to help other CDH families so that no one felt alone and every CDH parent had the information and support that they needed – along with advocating for awareness and research.

At CHERUBS parents talk about Long Term issues associated with CDH. Information and advice given by parents who have walked in the same shoes – not from people who have read about it in other people’s stories. We don’t just focus on birth and CDH repair and getting the babies home. We focus on the whole picture – pregnancy, birth, neonatal and beyond. We have forums for support for feeding issues and developmental delay – things often dealt with for years after coming home. We have forums for older survivors – some of our survivors have graduated high school, college, gotten married and had babies of their own – lives after CDH that is barely charted territory and these survivors especially need support. We also offer support for just the dads and siblings, for grandparents, for other birth defects or genetic issues.

And we offer support to ALL CDH families. Grieving parents know we are ALWAYS there for them, through the deaths and funerals, long after their families and friends have forgotten their cherub’s birthday and angelversaries – we still remember. We support those grieving parents who made all decisions – whether they chose to terminate or go to term – whether they chose extensive medical support or letting their child go at birth. You will never see pro-life or pro-choice issues raised at CHERUBS. We offer parents all the information on CDH possible – so that they can make informed decisions. Not all CDH parents have that information and regret the decisions that they make. We are there to offer ALL CDH families support – not to make personal judgments or religious condemnations.

At CHERUBS there is A LOT of support – usually over 100 posts each day on all of these topics!

At CHERUBS we recommend families get support from as many different sources as possible. From as many different CDH groups as possible. We work hard to have their best interests at heart – to do what’s right for these children and their families.

No one dealing with CDH ever has to deal with any CDH related issue alone again. And in reaching our goal that we set when founded – CHERUBS is a success. Helping families is our goal and will always be.

CHERUBS Congenital Diaphragmatic Hernia Brochure



Please feel free to download and print our CHERUBS Congenital Diaphragmatic Hernia Brochure

In English

http://www.cdhsupport.org/CHERUBSbrochure.pdf

In Spanish
(thank you to Sebastian Villalobos Moltedo for translating)

http://www.cdhsupport.org/CHERUBSbrochureSpa.pdf

In Dutch
(thank you to Nikki Haye for translating)

http://www.cdhsupport.org/CHERUBSbrochureDut.pdf

More translations coming soon!

Congenital Diaphragmatic Hernia Education Project – “Adopt A CDH Hospital”

We have a new educational project going on at CHERUBS! We are asking members to “Adopt A CDH Hospital”. When a member “adopts” a hospital, he/she will deliver Parent Reference Guides and CHERUBS brochures. CDH parents can also donate a CDH Awareness Poster:

Or “Stories of Cherubs” books:

These can be donated to the hospital in honor or in memory of their cherubs. When new cherubs arrive, they visit with the new families and keep an eye on them; making sure they have all the information and support that they need. If you would like to adopt a hospital, please let us know! You can e-mail me at dawn.williamson@cherubs-cdh.org and make sure to give me your name, contact info and let us know which hospital(s) you would like to adopt!

CHERUBS Web Site

CHERUBS web site is located at:

http://www.cdhsupport.org

It has greatly evolved in the past 10 years. Our site first went on-line in 1997. It was bad. Horribly bad. It was just a few pages with little information and really not much help to parents – more of a page on how to contact us. It looked completely unprofessional but it was a web presence. We did it 100% ourselves and continue to do the web site ourselves.

Today, our site is over 40,000 pages. It is full of stories of over 400 children born with CDH, over 100 forums, over 1000 photographs and also includes a CDH Research Library, free downloadable information for parents, our newsletters, non-profit info, volunteer informations, events, fundraisers, free blogs, personal photo albums and much more.

It is no longer just a few pages for CHERUBS but it a web site for and about families dealing with CDH.

A lot of thought has gone into our site….

Domain Name Extensions – CHERUBS web sites end in .org – cdhsupport.org, cherubs-cdh.org, cherubsconference.org. This means that we are an organization, a non-profit entity here to serve the public. Sites that end in .biz are business site and .com stands for “commercial” for commercial and business sites. They are usually for profit sites.

Originality – our site is original. It is not from a template that is used by 100 other sites. It was not bought pre-made and then edited to make our own. It is 100% original with original graphics and photos. You won’t see photographs clearly taken from other causes or that violate copyright laws. You won’t hear cheesy background music. You won’t see a site that looks like it was created by a 13-yr-old with free software – we are professional and our site reflects that. No ribbons stolen from other sites and claimed as our own. No morbid black backgrounds or trendy colors that will go out of style in a year or two. No flashy site with tacky bells and whistles and no content. Our site matches our logos, printed materials, events and it goes with CDH. Cherubs are baby angels. Our site and organization isn’t a hodge-podge of one person’s likes or one child. Our site features babies born with Congenital Diaphragmatic Hernia…. not just 1 child or a few… but 100’s of cherubs. Because CHERUBS isn’t about 1 child, it’s about ALL babies born with CDH and the families and medical staff and researchers that care for them and fight for them. Our name, logos, slogans are all 100% original. Our content is all 100% original. CHERUBS is the original CDH organization and our site reflects that. It takes a lot of work and creativity to build a custom web site for an organization or business; this is so much different than creating a personal site or an on-line brochure site. We have spent 1000’s of hours working on our site over the years and continue to work on it several hours a week.

Purpose – There are so many web sites for charities that are nothing more than advertisements for them and asking for money – with no services or information for parents. Nothing more than a couple of paragraphs about the cause or disease or issue they are supposed to be raising awareness of. Several paragraphs about what they want (donations) or what they sell or bragging about 1 achievement – they are advertising themselves and asking help from the public instead of offering something to the public. I am so proud that we do not have a self-serving web site but a member serving and a public serving web site that actually helps families and makes a difference in their lives and educates people about CDH.

Accuracy – Our research and statistics are accurate. We do not manipulate numbers to try to make CDH more common than it is… such as comparing the occurrence of CDH (1 in 2500) to Down’s Syndrome (1 in 900 at it’s lowest occurrence rate). We are not about sensationalism but integrity. We are about giving parents the information and facts that they need to make educated decisions to help these children. We offer more than 1 page of abstract statistics copied from a medical textbook – we offer 100’s of pages of information on CDH, in easy to understand layman’s terms. We offer free downloadable Parent Reference Guides, lists of commonly used medical terms, links to CDH research and much more. Services CHERUBS has been offering on-line for almost 10 years.

Listservs vs. Forums – We linked our site to our Yahoo groups that we started back in 1998… which we found out sells member e-mails to spam companies. CHERUBS is so proud to keep our member contact information confidential and it is never sold or given to anyone else. But listservs are outdated, unsecure and for organizations who do not want to take a serious position on the internet. Listservs are often plagued with drama and the archives are hard to sift through and easily edited and manipulated by dishonest listserv owners. While we still have our old listservs for archival purposes only (our lists and site archives are never edited or censored), our site contains forums for families. Families can log in and look under specific topics. Unlike on listservs, parents who are grieving do not have to read e-mails about survivors and parents trying to conceive do not have read about pregnancies – unless they want to.

Experience – I am a professional web designer now – thanks to all that I learned volunteering for CHERUBS. Over the past decade I have learned a lot and have seen a lot and use this for CHERUBS. We know search engine optimization. We know how to make a professional site. We know the importance of branding. We know and obey trademark and copyright law and challenge it when necessary for the good of the whole CDH community. We add to and update our site constantly. We put function before flash. We know what works and doesn’t work. Most importantly, we know how to best help and support the CDH on-line community.

Security – Our site is safe and software is secure. We do not sell or give out your information to other organizations, businesses or third parties. Ever. We put every new member through a security check to make sure that they are real and not spam robots or dishonest or banned ex-members who like to try to stir up drama. We will instantly remove any one who causes trouble, drama or who attacks others – though that hasn’t happened since our old days on the listservs. Our members are safe to post without fear of judgment or attack. There is no drama on our forums. Ever.

Support – All CDH parents, survivors and medical staff are welcome at CHERUBS. We do not discriminate against anyone based on experiences, decisions, or background. It doesn’t matter what your color, financial status, location or popularity is – there is no judgment and no “cliques” at CHERUBS. We welcome parents of survivors, non-survivors and expectant parents. We welcome survivors and grandparents. We welcome those parents who chose to terminate their CDH pregnancies just as we do those who chose to continue theirs. Politics has no place at CHERUBS.

Honesty – CHERUBS never posts anything that is not 100% true with proof and evidence to show so. Information that we post on our site and blogs is accurate. CHERUBS never involves ourselves in gossip, slander, false statements, outright lies, personal attacks or other salacious behavior. You will never see someone personally attacked on our sites or blogs. You will never see slanderous, untrue statements posted. Ever.

Global Support – CHERUBS is there for all CDH families around the world. No matter what country, state or hospital you are all – we are here for you. CHERUBS serves families in all 50 states and 38 countries.

http://www.cdhsupport.org

Gabe’s Gifts


Once upon a time, CHERUBS used to be able to afford to send out new member packets and items for new and expectant parents. We haven’t been able to afford to do so for the past few years unfortunately due to lack of donations and a membership that has grown wildly. But our New England members have started offering this service again to new and expectant members up north and we are thrilled and proud of what they are doing and hope to offer it across the U.S. again soon!

(from Corin)

Gabriel’s Gifts is a project we started to provide new and expectant parents of CDH babies with gift bags. We all know how difficult it is to have a child with CDH living in the NICU fighting for life, and hope that these bags will bring a little comfort to those families.

In these bags we hope to include items such as a baby blanket/quilt, eye cover, hat, booties, journal, pens, disposable camera, childrens book, lip balm, CDH information packet, gift cards, and any other comfort items that may be helpful.

We are in desperate need of donations to put these bags together. For $20 you can sponsor a gift bag that will help a family in need. In exchange for your sponsorship we will include your cherubs story in the sponsored bag. We also would greatly appreciate in-kind donations of any of the above items. If you would like to donate some items or would like to sponsor a gift bag in honor/memory of your cherub please contact Corin at cnava@cherubs-cdh.org.