Letters for CDH: Planning

Monday, May 4, 2009

Planning

After discussions with many of you, I think it's best if we choose a single target right now (two at the most). It will make a bigger impact to send all of our letters to one person than sending a few letters to many people. I was originally thinking Oprah, but according to Oprah.com she no longer accepts unsolicited mail. So, we need to choose someone else. Another option would be on June 15, when we send out our envelopes, we ALL send a show idea on Oprah's website to this link: https://www.oprah.com/ord/plugform.jsp?plugId=216. I know many of us have written her before, but if we all do it on the same day, maybe someone will take notice.

So...who's the celeb target? The Associated Press has a mailing address, so that's an option. I looked into ABC News (Good Morning America; 20/20) and they do not accept unsolicited ideas and materials. I also have a mailing address for Ellen DeGeneres.

While you are at it, if you want to drop them off in your local community (churches, schools, OB offices, small hospitals, etc.) go ahead! Get the word out there!!

Also, someone suggested that we all contact our local news outlets now and inform them of the project. It would be great to get some coverage prior to the event. I am planning to send our local newspaper an email and include the link to this site plus the letter I'm writing for this project. If you have a personal website/blog or one you are vested in, include it so they can get a personal sense of the effect CDH has on families. Since I'm in NC, I have the information for the News & Observer if any NC families are interested:
The News & Observer
215 South McDowell StreetP.O. Box 191
Raleigh, NC 27602
Main: (919) 829-4500
Customer Service: (800) 522-4205

I would love for each of you participating in this project to take photos of you preparing/mailing your envelopes. Send them to me at heelsgirl2001@yahoo.com and I will post all of them here (with a link to the website you choose to highlight if you'd like).

Don't forget to vote on your favorite one-liners in the poll.

3 comments:

Maxton's MommyMay 5, 2009 at 6:41 AM
Today show?
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Maxton's MommyMay 5, 2009 at 7:57 AM
Oh wait.. I just saw Ellen at the bottom and I think that is a good one. Quite a few of her shows are human interest. Also, it says June 15th in the post... is it June or July?
Ash
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Crazy Busy MomMay 5, 2009 at 12:17 PM
Hi,

I just wanted to mention something. Postage stamps go up in price next Monday. You can still purchase the Forever stamps at the current rate $.42 but use them after the price increases. So with all these envelopes it may pay off to purchase your stampes this week.

Also i think Ellen would be a good candidate. Lots of people watch her show. Plus I'm sure even Oprah or at least her produces know what is happening on Ellen. So if Ellen mentions this on her show or something it may spread to the others. Expecially if we all post a idea of a oprah show that day and mention that we are sending them to Ellen.
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the project

I started this blog after I posted an angry rant over yet another child losing his fight against Congenital Diaphragmatic Hernia (CDH) and found out that many of you agree.

We started getting great ideas from lots of people and I thought this would be a place we can come to share our ideas and come up with a plan.

The basic idea is to send out as many letters in blue envelopes as you can with a message on the outside of the envelope about CDH. The letters will be mailed out on July 15, 2009 to the Ellen Degeneres Show and we will also email the Oprah Winfrey Show that day. You may send letters to anyone else you wish to, but please concentrate on these two goals so that we can make a BIG impact. The more blue envelopes one person recieves, the better.

I think it will be therapeutic for families to write about their children. For those who don't want to write a letter but want to participate, you can send lots of empty envelopes with a message across the back. The canned messages can be found in the poll below. Use any of the messages you wish, keeping in mind the most popular ones will likely get the most attention.

If 200 families send just 20 letters each, that's 4000! Think of the number you can send, your friends, your coworkers, doctors, families...it makes me giddy to think about our recipients getting thousands and thousands of blue envelopes dumped on their desks all on the same day! Strength in numbers.

If it doesn't work this year, we'll do it again next year, and the year after...until someone finally takes on CDH as their cause.

what is cdh?

Congenital Diaphragmatic Hernia or CDH

Congenital = born with
Diaphragmatic = involving the diaphragm
Hernia = condition where organs/muscles protrude through a hole they aren't supposed to

CDH occurs in approximately 1 in 2,500 live births (http://www.chop.edu/consumer/jsp/division/generic.jsp?id=81164). It is as common as Cystic Fibrosis and Spina Bifida. Yet, until they have a child diagnosed with it, most people have never heard of CDH.

HALF OF ALL BABIES DIAGNOSED WITH CDH WILL NOT SURVIVE.

The diaphragm is a muscle that facilitates breathing and separates the abdominal organs below it, from the lungs and heart above it. When the diaphragm does not fully close/develop, around two months in utero, the intestines, stomach, liver, and/or spleen develop into the chest cavity. This presents a life-threatening situation because the abdominal organs take up the space where the lungs and heart should be developing.

This underdevelopment of the lungs is called pulmonary hypoplasia. Healthy lungs have millions of small air sacs (alveoli), which resemble a balloon filled with air.With pulmonary hypoplasia, there are fewer air sacs than normal, the air sacs that are present are only able to partially fill with air, and the air sacs deflate easily due to a lack of a lubricating fluid called surfactant. When these conditions are present, the baby may be unable to take in enough oxygen to stay healthy [and live].(http://www.cincinnatichildrens.org/health/info/chest/diagnose/diaphragmatic-hernias.htm)

These babies are immediately intubated, allowing a ventilator to breathe for them. The very sick babies will require ECMO, which is a heart/lung bypass machine. They will undergo repair surgery only when they are stable, and if they are strong enough to survive it, will go on to have many years of doctor's appointments, hospitalizations, reherniations, surgeries, struggles to learn to eat, occupational therapy, physical therapy, and speech therapy. GERD (gastroesophageal reflux disease) is commonly diagnosed in CDH children and can cause them numerous long-lasting problems such as feeding aversions, pain, esophageal erosion, vomiting. They are oftentimes labeled as failure-to-thrive due to their inability to take in enough calories to properly grow.

Most parents of CDH children will not hold their baby for the first time until several weeks or months after birth. Many times, the first chance these parents will hold their child will be when the child is dying in their arms.CDH is a devastating diagnosis and the survival rate has not improved much in many years.