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

Pass the Congressional Awareness Test, if you can.

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!

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.

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.

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.

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.

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.

I was supporting my wife and CHERUBS efforts. They have a done a lot and should be proud of all that they do for these kids.

Craig
AKA Daddy To A CDH Angel