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No Time For Equality, Congress Has a Hernia

In spite of all the talk from President Obama and Democrats in Congress about how they are “committed” to overturning the Defense of Marriage Act, which legalizes inequality in order to discriminate against same-sex couples, there isn’t actually one single piece of legislation that would overturn the law. The President hasn’t sent legislation to Congress. Congress hasn’t written legislation.

So, how can the President and congressional Democrats say that they’re “committed” to overturning the Defense of Marriage Act? Maybe it’s in the same sense that same-sex couples are allowed to say that they’re committed to each other in private, but can’t make an official, public act of commitment in the same way that heterosexual couples can.

It doesn’t really take that much commitment for the President, or someone in Congress, to write legislation. All they have to do is assign an aide to sit down and write it for them, and do the required paperwork. Politicians in Washington D.C. write legislation all the time, for small matters as well as grand ideas.

For example, yesterday, Senator David Vitter introduced a resolution to designate March 31, 2010, as National Congenital Diaphragmatic Hernia Awareness Day. (Can you come up with some ideas for how to celebrate that holiday?) If Vitter can take time to write the National Congenital Diaphragmatic Hernia Awareness Day resolution, Democrats in Congress and Barack Obama can take the time to write a bill overturning the Defense of Marriage Act…

…unless they’re not as committed as they say they are.

38 comments to No Time For Equality, Congress Has a Hernia

  • Yes, I can think of a way to celebrate National Congenital Diaphragmatic Hernia Awareness Day. I’ll be giving thanks that my daughter is alive and with me, instead of the other 50% of babies affected by CDH that DIE.

    CDH is a devastating and deadly birth defect that affects 1 in 2500 babies each year. It occurs at the same rate as Spina Bifida and Cystic Fibrosis, yet the outcome is often fatal. Would you think it insignificant to see a resolution calling for awareness of those birth defects?

    Raising awareness for CDH brings in money for research that can lead to better treatment and improved survival rates. So, you see, it’s hardly insignificant to designate a National CDH Awareness Day. Or do you also scoff at Breast Cancer Awareness?

    Before you belittle something that you clearly know nothing about, take the time to make sure you won’t be pissing off any mothers with empty arms.

    Jennifer Miller

    • Jim

      A symbolic bill that says something nice doesn’t do anything. There’s nothing wrong with actual money for research for diseases like CDH; in fact, that’s a good thing. But this bill only celebrates National Congenital Diaphragmatic Hernia Awareness Day… without contributing a dime to research to end it.

      Why is giving lip service to something without doing anything about it a good thing? That’s the point of Peregrin’s post… that this Congress is all about declaring this Day and that Week, but it isn’t doing actual legislative work to change much that needs changing.

  • Kellie Myers

    Like Jennifer, I can also think of a way to “celebrate” National CDH Day. I will be giving thanks that my child survived after 4 surgeries, 115 days in the Neonatal Intensive Care Unit and 18 days on a heart/lung bypass machine. Or I could choose to “celebrate” with a CDH family that was not as fortunate by visiting their infant child’s grave.

    Until you have had a child with CDH and have fought long and hard for someone, ANYONE, to recognize what a horrible birth defect this is, you don’t deserve to knock down the efforts to raise awareness.

    An awareness day is one step in the right direction toward getting actual legislation that does direct money to research. I seriously doubt that the author or “Jim” had heard of CDH until this Awareness compaign, which means it’s accomplishing exactly what we want.

    • Wrongo, Kellie. I have the right of free speech.

      Besides, I’m not knocking down medical efforts to deal with Congenital Diaphragmatic Hernia. I’m knocking a resolution for a National Congenital Diaphragmatic Hernia Awareness Day that will NOT be a national day of awareness. Do you know how many days of awareness, and weeks of awareness, and months of awareness, and years of awareness are passed by Congress? The number is huge. How many of those awareness events are followed up with legislation that actually does something? Not many. How many people are aware of these awareness resolutions? Almost no one.

      This is a tool for members of Congress to gain the favor of interest groups without actually accomplishing anything. You’re being duped.

      Besides that, the comparison is between a toothless resolution and the need for actual change. What’s stopping David Vitter for offering legislation to provide more money for CDH research or treatment? Is it too hard for him to sit down and actually write the bill?

      This is accomplishing exactly what you want? What? You think that kids born with CDH are going to be better because I used the phrase “Congenital Diaphragmatic Hernia” in a blog article?

      Days of awareness are political placebos.

  • We have worked very hard to have March 31 designated as Congenital Diaphragmatic Hernia Awareness Day – in 2008 31 States issues Proclamations, yes they just designate a day but it also gives a platform for those affected by CDH to speak. From that we have raised funds for medical research. Over $16,000 was raised by a very small number that went to Saint Louis Children’s for research.

    There have been countless news articles and media reports that were the result of our efforts.

    My daughter was born in 1999 and died of CDH. In over 10 years the survival rates have remained the same. Mucular Dystrophy occurs 1 in 6000 – CDH occurs one in 2000.

    God help you if you have a family member affected. Families surviving it go through a living hell on earth.

  • God won’t help me if I have a family member affected, and neither will an Awareness Day.

    You could build a platform for fundraising around the publicity of legislation that actually DOES SOMETHING to help people, Elizabeth.

    • Jacob

      We have done something to help people – as in Breath of Hope has awareded scholarships this year to help further education. We give information that has been reviewed by the medical community. We give out ribbons freely along with handprint kits to our parents and hospitals. We publish materials which help famillies and distribute these care packages.

      Do something – we have been! As for the critics out there – we will not comment because I had Pediatric Surgeon of 40 years tell me – “Not to give up.”

      Perhaps you all need to focus on your causes and not bash others?

      • Anonymous

        elizabeth, i mean jacob oopps!

        you kicked me out of breath of hope for not agreeing with you when you trademarked cdh awareness. i said it was wrong to use a proclamation that i got in honor of my daughter for your trademark. you kicked me out. i was one of many.

        most of what you posted are lies you keep telling people. we all know that you use donations for trademarks and lawyers to try to control cdh. you are more interested in having your name on government paperwork than doing something real for cdh.

        we all know it and he called you on it.

      • Jim

        Jacob, please pay attention to what Peregrin is saying and what he’s not saying. Vitter’s declarative, actionless legislation does not accomplish these things you list … groups engaged in practical efforts have accomplished these things. Peregrin is criticizing the symbolic, achievementless legislation, not groups engaged in practical efforts. That’s a crucial distinction.

        • Jacob

          Ummm… not me… I came in and saw an argument involving me and couldnt fugure out what I had started at first. I havent started any real fights since Herbie the Cosmic Iguana… I guess just someone else witha cool name… ;-)

    • I appreciate your view Pregrin Wood however – this is bi-partisin and what has the Pink Ribbon done for Breast Cancer? True, it has with everything issues but this is just one of the mountains we must cross to get to where we want to be. I have had doctors, researchers of CDH contact me to tell me this was a good thing. And for the record, this Resolution was written by myself and edited by our Board of Directors, one of our Moms sent it to her Mother-in-law who happens to be connected to Senator Vitter. So, there is no “special interest” here.

      Next – perhaps I will write a Bill for Congenital Diaphragmatic Hernia Medical Research Funding. I am but one person. Would you like to volunteer your services? Please feel free to contact me – we always need volunteers – but keep politics aside – politics are off the record with nonprofits. (Lobbing for our causes are not.)

      And for the record, God is always there – or whatever higher power you believe in – sometimes we just don’t realize it.

  • Marion Acord

    I have a lot to celebrate on CDH Awareness Day (my daughter’s heroic fight). I had never heard of CDH until October 23, 2008 and that was the day my daughter was diagnosed with the defect. She was born on February 17, 2009 and fought for 22 days before losing her fight to CDH. This defect affects approximately 1600 families a year and very little attention is being devoted to research and awareness. Everyone has things that are important to them and if this resolution will help in our awareness and research efforts then so be it. I am pretty sure a little time to help the families current and future that are affected by this defect may be time better spent that many of the things the government focuses on.

    There are Awareness Days for so many diseases and defects, and for us, it is a beginning to a long hard road to raise the funds and awareness to find the cause and a cure for the CDH. You have to identify the problem before a solution can be discovered, and we need people to identify that CDH is a problem.

  • Ashley Standifer

    I too have a lot to celebrate on CDH Awareness Day. My son was diagnosed with this birth defect on October 19th, 2008 and was born on March 3rd, 2009. He fought for 18 days before he passed away. I plan to celebrate his life on CDH awareness day and inform others of this awful birth defect. I think that “giving lip service” to something is exactly how people decide to contribute. You cannot contribute to a cause if you have never heard of it or no nothing about it- which is likely the case with the members of congress. Several of my own doctors had never heard of it and I was being seen at a major medical center.

  • Also, Mr. Wood is giving you a unique insight as to how the public will be affected (or rather, not be) to a national day for CDH Awareness. The CDH community does not need an awareness day for those of us who already know what CDH is… that’s rather ridiculous. If the goal is to raise awareness for the general public, then he is correct. How many of us know when National Spina Bifida Awareness Day is? Or National Craniosynotosis Day is? Or National West Virginia Albino Possum Day is? We don’t because it doesn’t affect our lives so we don’t pay attention. If you see a news clip or a newspaper article on a booth or blood drive for this day, then you might be made aware. He makes valid points. Before any of you get defensive… think about what he’s saying. If the goal is truly to raise awareness then being rude to a member of the public who actually is raising awareness by posting an article, is not the way to go.

    So THANK YOU, Mr. Wood for using this day in your article and making 1 or 2 or however many people aware of the name of this birth defect. And let me make you aware… not all CDH moms are aggressive and most of us raise awareness every day and bring honor to our children and do appreciate when a member of the public takes notice. So thank you. :)

  • My previous post didn’t make it for some reason…As the mom of a child who lived with CDH for over 6 years and then died… I know how all families feel. I’ve also been working with CHERUBS for 14 years, raising awareness, research and support. Not just lip service or whatever Mr. Wood called it. While he could be a little more sensitive to CDH parents, he does have many valid points. And he does have a right to his opinion.

    Will many people outside the CDH community know about this day unless they happen upon an article and read it? Probably not. In reality, a national day really does not do any good except for those who accomplished it. The parents who wrote in to help with the day surely feel a sense of achievement in having that piece of paper in honor / memory of their child…. it makes them feel like they are doing SOMETHING in a CDH world where most things are out of our control. So for that… it is doing something positive… for them.

    And IF there is no trademark on this day as well (long, legal drama on 1 organization trying to own awareness of this birth defect)… and other organizations and CDH families can participate and raise awareness and research funds on that day – then yes, it is a positive thing that does help CDH families. If the true goal is to help ALL CDH families and allow them to participate without paying a corporation money or asking 1 woman’s permission to use the term “Congenital Diaphragmatic Hernia Awareness” (as if anyone who be so unethical to trademark “Autism Awareness” or “Breast Cancer Awareness”)…. so there are a lot of politics involved in this day – literally.

    It COULD be a good thing… whether that actually happens remains to be seen.

    In the mean time, berating someone who has an opinion that differs from yours does not help the CDH world at all.

    Dawn M. Williamson
    President & Founder
    CHERUBS – The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support

    …. where EVERY day is CDH Awareness Day….

  • Sick of the CDH community

    I agree with having a CDH awareness day, but also agree that the bill should have the teeth to fund research to this horrible defect, which almost took my child away from me.

    I am amazed that anyone, especially certain people who have posted above, would criticize others for berating people who do have opinions who differ from theirs when they have made a CAREER out of creating conflict in the CDH community, usually through “anonymous” posts on CDH websites. How DARE you accuse others of being aggressive??!!!? It’s always nice to see the pettiness and immaturity of the CDH community spill out to the general public. All of these arguments over the color turquoise, CDH awareness days, etc are making most of us CDH parents sick. If you don’t believe me, just watch the comments this post will “inspire” out of a certain CDH community. And no use in trying to provoke me, I will not be posting anything else here, no matter what names you call me.

  • Anonymous

    There seems to be 3 types of groups in the CDH community

    1. The CHERUBS work together to do wonderful things for all the CDH community
    2. The community for the benefit of one group
    3. Parents who don’t care about the community or other CDH families at all but love to complain

  • Anonymous

    Please do tell what CHERUBS has done for the CDH community except use its resources to fight with other organizations. Everyone needs to stop this immature fighting and find a way to come together to stop babies from dying from this horrific defect.

    • You ask what CHERUBS has done….

      Throughout the years we have been very busy and we have accomplished A LOT for families affected by Congenital Diaphragmatic Hernia through research, awareness and support!

      1995

      CHERUBS is founded with 2 members; Dawn Torrence, mom of Shane Torrence, and Rhonda Montague, mom of Preston Montague

      CHERUBS files for an Employee Identification Number, the first step to Non-Profit Status

      CHERUBS is granted an EIN and 501 (c) III Non-Profit Status

      CHERUBS Board of Directors is formed

      Our first issue of our newsletter, The Silver Lining, is published

      CHERUBS Parent Reference Guide was created

      1996

      First newspaper article about CHERUBS is printed

      CHERUBS attend our first American Pediatric Surgical Associations conference in San Diego, CA

      1997

      CHERUBS first Congenital Diaphragmatic Hernia Research Survey Results are published

      CHERUBS New Member Packets are created

      CHERUBS goes on-line

      CHERUBS web site is created

      CHERUBS first listserv is started

      CHERUBS Prayer List is created

      1998

      We have our first Secretary, volunteer Judi Toth, mom of Christopher Toth

      CHERUBS Volunteer Coordinator position is created

      Congenital Diaphragmatic Hernia Research Survey Results are published

      International & State Representatives are created

      Cooking with Cherubs is published

      CHERUBS 1999 Calendars are published

      CHERUBS first bake sale

      CHERUBS first raffle held

      CHERUBS first on-line chats

      CHERUBS membership grows to over 100 CDH families

      1999

      CHERUBS is contacted by ABC’s 20/20 staff for input on a story of a cherub

      CHERUBS members participate in Noah’s Flood ECMO Fundraiser for National Children’s Hospital in Washington, DC

      Our first Grieving Parents Get-Together is held outside of Washington, DC

      Congenital Diaphragmatic Hernia Research Survey Results are published

      CHERUBS listservs move to Onelist.com, which becomes Yahoogroups

      A forum for CDH medical professionals is created

      New seperate listservs were created for grieving parents and parents of survivors

      CHERUBS Advisory Committee is created

      CHERUBS Conference Committee is created

      CHERUBS Kids Book Committee is created

      CHERUBS Fundraising Committee is created

      CHERUBS Research Committee is created

      CHERUBS Welcoming Committees are created

      CHERUBS Card Committees are created

      CHERUBS Grant Committee is Created

      CHERUBS Welcoming Committees are created

      CHERUBS Totebag Committee is created

      CHERUBS Library Committee is created

      CHERUBS offer parents free web site graphics

      CHERUBS 2000 Calendars are published

      CHERUBS first Lock-In Fundraiser

      CHERUBS first t-shirts and sweatshirts are created

      CHERUBS first Christmas Fairy fundraiser

      Newsletter Tribute fundraiser is started

      CHERUBS membership grows to over 500 CDH families

      2000

      Our first CHERUBS International Member Conference is held in Orlando, Florida

      Our first Australia National Member Get-together is held

      Our first Ohio member picnic is held in Columbus, OH

      Congenital Diaphragmatic Hernia Research Survey Results are published

      CHERUBS first message boards were created

      Cooking with Cherubs Volume II is published

      Our first Ebay Auctions are held

      Our first Celebrity Auction is held

      Listservs were created for our various Committees

      2001

      Family Circle magazine contacts CHERUBS for input on a story of a cherub

      CHERUBS petition for Certification of Ultrasound Technicians is started

      Our first North Carolina member get-together is held outside of Charlotte, NC

      Our first member Candlelighting Ceremony is held

      CHERUBS CDH Video Committee is formed

      CHERUBS Australia creates it’s own national web site

      Australia National Member Get-together is held

      Ohio member picnic is held in Columbus, OH

      CHERUBS reaches 1000 members

      2002

      CHERUBS moves into it’s first office

      Our first Alabama member get-together is held

      Our first Texas member get-together is held

      Our first United Kingdom National Member Get-together is held

      Australia National Member Get-together is held

      CHERUBS 2nd Celebrity Ebay Auction is held

      Ohio member picnic is held in Columbus, OH

      CHERUBS is contacted by Lifetime Televisions “Strong Medicine” for a CDH story line

      CHERUBS membership grows to over 1000 CDH families

      2003

      Member Ebay Auction fundraiser is held

      Australia National Member Get-together is held

      United Kingdom National Member Get-together is held

      Ohio member picnic is held in Columbus, OH

      2004

      CHERUBS UK is granted Non-Profit Status

      Heidi Cadwell represents CDH parents at the International CDH Study Group Congress in Texas

      CHERUBS Listservs were created for each state and country where we have members

      CHERUBS cafepress store is launched

      Australia National Member Get-together is held

      United Kingdom National Member Get-together is held

      Ohio member picnic is held in Columbus, OH

      CHERUBS 2005 Calendars are published

      CHERUBS Adopt A Cherub Link Program was started

      2005

      CHERUBS submits research data for inclusion in the International CDH Study Group Congress in Germany

      Ohio member picnic is held in Columbus, OH

      United Kingdom National Member Get-together is held

      Australia National Member Get-together is held

      CHERUBS membership grows to over 1500 CDH families

      2006

      “Stories of Cherubs” is published

      CHERUBS new web site is started

      Ohio member picnic is held in Columbus, OH

      Australia National Member Get-together is held

      United Kingdom National Member Get-together is held

      2007

      With several other support groups, CHERUBS joins the Alliance of Congenital Diaphragmatic Hernia Organizations

      CHERUBS Australia files for Non-Profit Status

      CHERUBS Board of Directors welcomes 3 new members

      Angels for CHERUBS is started

      CHERUBS New Member Coordinator position is created

      CHERUBS new web site goes live

      CHERUBS offers parents personal photo albums on-line

      CHERUBS offers parents personal web blogs

      CHERUBS offers dads their own forum

      CHERUBS offers grandparents their own forum

      CHERUBS Angel Ball Committee is formed

      CHERUBS Golf Tournament planning begins

      Ohio member picnic is held in Columbus, OH

      Australia National Member Get-together is held

      United Kingdom National Member Get-together is held

      Michigan get-together is held in Flint, MI

      CHERUBS Posting Contest Started

      ATV Rally Planned

      CDH / NICU Baby Book Committee formed

      Trick-or-Treat for CHERUBS Fundraiser started

      CHERUBS begins affiliate relationship with GoodSearch.com

      First Congenital Diaphragmatic Hernia Information Packet Party held
      CHERUBS undergoes an NC State Department audit and investigation and passes with flying colors

      Congenital Diaphragmatic Hernia Awareness Ribbon Created

      Congenital Diaphragmatic Hernia Awareness Jewelry designing begins

      CDH Awareness Logo created

      CHERUBS Myspace Page created

      CHERUBS Facebook Page created

      CHERUBS Blogger Account created

      CHERUBS Live Space created

      CHERUBS Car Wash is held

      CHERUBS Truffle Sale is held

      CHERUBS is listed with Wikipedia

      Children’s Holiday Card Drawing Contest

      Christmas Raffle Idea begun

      Donation Jar Idea begun

      Christmas Fundraising Posters for Stores Idea begun
      Valentine’s Day Fundraising Posters for Stores Idea begun

      CHERUBS membership grows to over 2000 CDH families

      CHERUB Web Site averages 300,000 hits per MONTH

      2008

      CHERUBS name changed to CHERUBS – The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support

      2008 International Member Conference

      Inaugural Angel Ball

      Golf Tournament

      Ohio Member Picnic

      Michigan Member Get-Together

      North Carolina Member Get-Together

      Grieving Parents Get-Together

      ATV Rally

      Gabe’s Bowl-a-Thon

      Gift Bag Project Started

      With other organizations and over 6000 people, CHERUBS leads the fight against the trademark on the phrase “Congenital Diaphragmatic Hernia Awareness”

      CHERUBS CDH Research Fund Started

      14 Newspaper Interviews

      3 Television Interviews

      Personalized Congenital Diaphragmatic Hernia Awareness Ribbons Begun

      2009

      Michigan Bowl-A-Thon

      Valentine’s Day Awareness Fundraisers

      CHERUBS 2009 UK Conference

      1st CDH Celebrity Spokesperson, Patsy Pease

      CDH Celebrity Spokesperson, Wendy Petty

      1st CDH Beauty Pageant Platform given by Wendy Petty

      CDH Celebrity Spokesperson, Jaquetta Taborn

      CDH Celebrity Spokesperson, Rene Couret

      CDH Awareness & Education Posters

      Adopt A Hospital Program Started

      International Congenital Diaphragmatic Hernia Day of Prayer & Education

      “We Own Congenital Diaphragmatic Hernia Awareness” Video featuring 100’s of children born with CDH

      Texas Bake Sale

      Pennsylvania Get-Together

      CDH Research Site Begun

      CHERUBS Represents CDH Families at American Pediatric Surgical Association Conference

      CHERUBS Begins Research Work With Over 80 Hospitals In The International CDH Study Group

      Several Interviews for National Media

      CDH Baby Book

      CDH Kid’s Book

      CDH Song and Book Project With The Jammies

      CHERUBS CDH Scholarship Fund Started

      CHERUBS CDH Family Support Fund Started

      CHERUBS CDH Family Assistance Fund Started

      CHERUBS CDH Awareness Fund Started

      Coming soon!

      2009 International Member Conference

      Masquerading Angels Ball

      Golf Tournament

      Halloween Cherubs Awareness Project

      Ohio Picnic

      CHERUBS Australia Conference

      2009 CDH Research Study Report & Publication

      Ebay Auctions

      CHERUBS Car Wash

      CDH Walk

      CDH Balloon Release

      2010 International CDH Conference

      Another CDH Celebrity Spokesperson

  • Jean Ashner

    I realize that the author of this post that has started, once again, the bickering between the CDH groups, did not mean for this too happen. I don’t believe the suthor intended to have his comment sound so trite and I believe he was thinking that Congress should be touching on very important issues and not trival ones but awareness for CDH is not trivial and is much needed. Awareness will bring about more research and more research will bring about more hope to the parents, tomorrow and the next day and the next, who will get the devastating news that their child has CDH. And that is what is important. The bickering does need to stop but when you have so many different people so passionate about a birth defect that affects just as many people as Spina Bifida and Cystic Fibrosis but is not widely known, that passion can lead to many different opinions and different opinions can lead to controversey. So yes, everyone needs to come together for the newly diagnosed babies, the survivors-those still fighting in the NICUs and those who have made it home but face many different and very trying challenges ahead and for those of us who are not able to hold our sweet babies any longer because they lost their fight–my boy may have lost his fight but his battle is still being raged by me and many others like me—striving for awareness. So let’s not trivilize this “bill” but embrace it and make it a reality and YES LET’S HAVE THE CONGRESS ALSO EMBRACE OTHER WORHTY NEEDS TOO!
    Jean Ashner-I am a member and board member of Breath of Hope but also and mainly a mother who lost her ninth child to this deadly defect and prays every night that no one else should have to lose theirs.

  • Melissa

    I disagree with Peregrin’s statement that “efforts to promote awareness without helping anyone is trivial.” I feel as though efforts to promote awareness of CDH actually DO, in effect, HELP children with CDH by doing that very thing- promoting awareness. The more people who are aware of this disease, the greater the liklihood of funding, donations, people understanding the birth defect and making efforts to promote legislation and research to CURE this disease. I certainly wasn’t aware of CDH until my son was in the NICU and we walked through it with another family whose child was also fighting for their life. My son doesn’t have CDH but my heart goes out to those families affected by it- who are now some of my good friends. I doubt anyone who lives with the affects of CDH every day would trivialize a day promoting awareness of this disease. Most people don’t have a clue what CDH is or even what the initials stand for, and that, is extremely sad in my opinion. I was one of those until recently. Now BECAUSE I have been made aware of this disease, it is something that I make an effort to donate money to and promote b/c it IS important!!

    • Melissa, I wish you would think through what you’re saying. You’re urging people to donate money to organizations that promote awareness, in the hopes that by creating awareness, someday, these organizations will start “making efforts to promote legislation and research to CURE this disease.”

      Have you asked yourself why these organizations aren’t simply going straight to the effort to work with members of Congress to craft legislation providing funding for research?

      This middle step of “awareness” through a National Day of Awareness, which certainly most people will never even know is taking place, is unnecessary. I’d look into the funding of these organizations, because it sounds like they’re asking for funds to promote awareness of their own work, so that they can get more funds, to promote awareness of their work, so that they can get more funds…

  • Amen. Mr. Wood is correct on all accounts. Even if President Obama himself got on national television and explained to the world what CDH is…. what good would it do? Would it help 1 single baby if it didn’t lead to research? So what if the world knows what hurt or took our children if nothing good comes from it? Research is the key and should be the goal of all CDH organizations. Which is why CHERUBS hasn’t wasted our money, time and volunteers or laid claims to days or phrases or trademarks or other nonsense and bi-passed all the popularity contests and needless paperwork. We’ve gone straight to research – and have been since 1997. Support since 1995. With a long, long, long list of milestones and achievements that do make a difference. Raising awareness is wonderful… if it’s a step along the way and not the only goal.

  • Dear Mr. Wood:

    Although I disagree with your assessment of Senate Resolution 204, I respect your right to free speech and your opinion, and frankly any mention of CDH is better than none.

    A diagnosis of “Congenital Diaphragmatic Hernia” is devastating for those of us who have had CDH babies. As you can see, instead of being united by the common bond of this birth defect, the CDH community is being torn apart over a legal issue.

    For those uncomfortable donating to organizations, there are reputable hospitals with established CDH programs and clinics that are happy to accept donations and funding to help continue to provide the best treatment and research possible for CDH children.

    It is really a shame that an opportunity to promote CDH awareness here, and why it is not just a “hernia”, once again has turned into a bickering match.

  • Tiffany

    I think what people felt offended by was the frivolous way the title was phrased. “Congress has a hernia” – that sounds to us as if you are trivializing a birth defect that does cause a lot of pain and suffering to so many. I understand that you were trivializing the legislation, not the birth defect – but it was not taken that way by some. For many parents who have gone through the trauma of watching our children suffer, any slight to CDH raises our hair up a bit. We felt that you had no idea what it was and therefore belittled it.

    Asking for funding right now will not work – we have a huge deficit that is only going to get worse. CDH does not have a powerful lobby that wields any influence on capital hill. I doubt we would have even been able to get a member of congress to sponsor such a bill, or perhaps he or she would have, knowing it wouldn’t get far. The money is not there. But at least at this point we feel the recognition is better than nothing at all. If we want change, it will have to start at the grassroots level – but it doesn’t hurt to have a day proclaimed by the national government. This may give us more leverage when we try to raise awareness/funds locally for our hospitals. Someday, we may be able to get a bill for funding. When more awareness is raised about the costs to society itself because of the number of families who have to go on public aid due to the medical costs that occur with CDH, then members of congress may see the benefit. But right now they don’t have time to read the 1200 page cap and trade bill or the 1000 page health care bill, let alone a bill that asks them for additional funding for a birth defect they have never heard of (but the national day may possibly help with that). In sum, many of us do not feel that it is a waste of time and we appreciate what Senator Vitter did, but you are entitled to your opinion.

    As for the CDH bickering, that disgusts me even more than the title of this article. We have all suffered with this birth defect and we all should be working together. But if we lived in a utopia, we wouldn’t have to discuss CDH, poverty, war, a broken health care system, etc. to begin with.

    • I am so, so, sorry Tiffany, that people got offended that I would imply that awareness about a disease is of less importance than legal discrimination against people here in the United States, ripping families apart. I’m sorry people got offended, and you got disgusted, because it’s a stupid thing for you to get offended and disgusted about. You get offended and disgusted that I would dare to point out that Congress is passing worthless bills that don’t actually accomplish anything for anyone who has any disease, while real problems go unsolved. Sorry, Tiffany, but your reaction gets no sympathy from me.

      It hurts things a great deal when Congress is clogged with pointless bills of “awareness” that don’t even actually bring much awareness. Congress has more serious business to deal with.

  • Tiffany

    A couple more things..I also want to point out again that Senator Vitter did not “take the time” to write up the legislation. He was simply kind enough to introduce it for us – so it took very little time away from “more important matters”. I just wanted to make sure that people realized that attack on Senator Vitter was not true. He knows someone who has personally been impacted and wanted to help them out.

    Last of all, I can also think of a way to celebrate the day. I will visit my son’s grave as well as do all I can to bring awareness to our community so that other families do not have to desperately search the internet for any information on this all too common birth defect. I was given no information by my doctor and was left to my own devices to find out what I was dealing with – I am hoping to change that for future families. I will also be raising money for CDH research in St. Louis. Do I need a national day to do this? No, but again it can’t do anything but help.

  • Tiffany

    Mr. Wood, let’s try this again. I am going to list the points that I made in the first post as well as respond to your very respectful response:

    The reason why I, and many other CDH families, were offended was because of the sarcastic tone of your article towards something that is important to many of us.

    Why are we not trying for a bill that will “do something” at this time? There is no money, it would not pass.

    The TITLE of the article disgusted me. Again, I was disgusted by your TITLE and your making light of a very serious birth defect. You will argue that you were not making light of the birth defect, but that you were making light of the legislation. But sayings such as “Congress has a hernia” and “Can you think of what to do on that holiday?” obviously trivialize the seriousness of the issue that the legislation is about, whether or not you feel the legislation will accomplish anything or not.

    Nowhere did I say that I, or anyone else, was offended by your opinion that repealing the Defense of Marriage Act is more important than an awareness bill. Equality is very important, I couldn’t agree more. I am not offended and disgusted that you would “dare to point out that congress is passing worthless bills”. If I was, you would be right, it would be a stupid thing to be offended and disgusted about. But you are wrong and I don’t know how you got that from my post. If you read it, you will read that I was disgusted by your phrasing and your trivializing a topic that is very dear to my heart.

    Did I say I wanted your pity? I could have sworn I didn’t write anything to garnish pity from a gentleman like you. I am pretty sure I just answered your question of how we would celebrate that day and that I stated my opinion on why I was offended.

    Let me repeat for good measure, I am not offended that you think our awareness bill is worthless, I am not disgusted by that. Again, I was disgusted by the title and by the general tone of your article towards CDH. To anyone who doesn’t know what CDH is, they would think that this awareness day is about something as petty as someone picking up something heavy and getting a hernia – let’s celebrate it as a national holiday! That is insulting to anyone who has been through what these families and their children have been through.

    I don’t expect you to be sorry that you offended people – that is your job to write articles that create debate and get people talking – you do your job well.

    Does awareness matter? Yes. I wish there would have been more awareness when I got the diagnosis. I wish my doctor would have at least given it a name instead of just saying “your baby’s stomach is in his chest and he will have to have surgery” and sending me on my way. This diagnosis leaves families completely in the dark, awareness will help them find a way in the dark. This bill is a platform we can use to further our awareness efforts so that families will know that there are wonderful organizations out there to help them through this difficult time and that there are survivors, that there is hope. So yes, awareness does make a difference. I don’t expect the nation to go out in the streets and celebrate this day, but the thousands of families who have been impacted will use it to further their cause of awareness and research. Therefore the bill is far from worthless.

    Does congress have more important things to do besides pass a bill that will help families bring attention to a birth defect that kills and tears families apart? It depends on your perspective. To some, repealing the Defense of Marriage act right now should be the least of our country’s worries, to others, it is incredibly important. Obviously this is incredibly important to you, just as CDH awareness is important to us. If I had just read your article and not been personally impacted by CDH I would have also been appalled that Senator Vitter took the time to write legislation (which again, is false, he did not write it) about something as silly as a hernia awareness day. I would have agreed with you wholeheartedly. But I know what CDH is and I know that I can use this legislation to make a difference in my community and that others will use it in communities across the country. Am I offended and disgusted that you disagree? Of course not, that would be stupid.

    I imagine you will have a response and I am not sure when the going back and forth ends. This was fun, but I have said my piece and I have other things to focus on now. Good luck to you in getting congress and the President to act on repealing the Defense of Marriage act. For the safety of our country, perhaps you could also work on getting rid of the “don’t ask, don’t tell” policy as Obama is dragging his feet on that one as well.

  • Mr. Wood:

    I have to say that Tiffany raised the same points I wanted to raise with you but I want to cover something you stated.

    What has awareness of this birth defect and this campaign done to help families? Breath of Hope has printed materials we provide families which have been edited and reviewed by Medical Professionals, we have obtained grant funding for scholarships which have been awarded ($10,000 – 5 scholarships were awarded this year of $2,000 each, two to CDH survivors, one to a NICU Nurse furthering her education, one to a family member of a CDH survivor, one to a young man who wants to become a doctor.)

    Funding has gone to a program where we send our printed materials which are tailored for those Expecting a CDH Baby, to those grieving their child we have a booklet (created by our organization) and we purchase books on grief of a child to send to them, for those families who have survivors of this birth defect, we have sent them materials too. Funding has gone to create hand print kits which are given in our Expectant Parent Packages and we donated 450 of these kits to the University of Virginia NICU for all families who have a child admitted there. (CDH or any other issue, they all receive a kit.) If their child survives it is a precious keepsake. If their child dies, it is a memento that no one can ever take away.

    We provide ribbons, newsletters, cards, information and support. Due to the economy our plans for a Congenital Diaphragmatic Hernia Summit have been placed on hold. We apply for grants in order to do much of our activities – from coorporate America. Donations have also been directed to hospitals for Medical Research. Over $16K went to Saint Louis Children’s Hospital this year and we sent funds to Johns Hopkins last year. We will continue to do this and use the funding we receive to BENEFIT those who are affected by this birth defect. (Our Administrative costs are under 15% – see if other organizations out there have the same percentage – and in the nonprofit world you try to keep them under 27%.)

    I believe you are is a person who will complain about issues and not DO anything about it. If you want something done – stop your complaining and roll up your sleeves and DO something. Change.org has a petition right now on Don’t Ask, Don’t Tell. They also have a petition created by myself for those who want to send an email to their representatives about Resolution 204 on Congenital Diaphragmatic Hernia Awareness Day for March 31, 2010. http://www.change.org/actions/view/national_congenital_diaphragmatic_hernia_awareness_day_-_march_31_2010 Look under ACTIONS and see that there are thousands out there actually doing something for their causes and beliefs. Those who want to do something to make this world a better place.

    For the record – I know very few parents of CDH children, living or dead who want your pity or anyone else’s either! We want answers. We want more to know of this birth defect that when we heard our child had it – we were so confused and devastated because we never ever heard of it before! Awareness would change that fact!

  • Anonymous

    Ms. Doyle-Propst,

    For 5 years that is quite a short list of accomplishments. It seems other groups have been doing these things for years. I don’t recall any other CDH organization needing Congress to give permission to raise awareness.

    You spend quite a bit of time filing paperwork with the government, do you not? I believe you have filed trademarks, as well as false complaints against other organizations? Now you are filing proclamations with Congress. You do waste quite a bit of tax-payer money in this hard economy.

    Perhaps if you spent less time trademarking the phrase Congenital Diaphragmatic Hernia Awareness and filling out government forms for various questionable reasons and more time doing things that actually assist CDH families, the CDH community would be better served.

    CDH Dad Sick Of The Drama

  • CDH Mother

    You are basically one of those people who aren’t for the government, aren’t for God, and hate life. If only you were born with CDH instead of our precious little ones… maybe then we wouldn’t have to hear your mind-numbing opinions you douche bag!

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