Letters for CDH: The Beginning...

Tuesday, April 21, 2009

The Beginning...

If you are here, you have probably been redirected from our personal blog.

Here's the original post:

Apparently a lot of people agree with the "Angry" post and we got lots of ideas. I was thinking, you know how the Pro-life supporters recently began "Life/Red Envelope Project" where they send empty red envelopes to President Obama?? Why can't everyone in the CDH community pick a celebrity or someone who can help us get the word out and bring attention to the cause and pick a day to send them turquoise envelopes. We can have a standard message on the back like "half of all babies diagnosed with Congenital Diaphragmatic Hernia die" or include a letter about your story, your support, etc. Maybe even include a photo of the child you represent. Include a listing of blogs and ask for their support. We can send them to all the national newspapers, the AP, CNN, Fox News, etc. You don't need to be affiliated with one single CDH group to do this. It would be a way for EVERYONE to come together and do something TOGETHER for the single cause. You can participate even if you're not a parent or family member--if someone's story has touched you, just send an empty turquoise envelope with a message written on the back.If we come to an agreement on a single date to send these, we can inundate our targets with turquoise mail and maybe catch someone's attention.Let me know what you think. heelsgirl2001@yahoo.comI started a separate blog to keep up with the details and suggestions where we can all have a central place to go. It's still a work in progress. If you want your blog or Carepage or webpage or cause added to the list, please email me at the above email and I'll gladly add it. If you don't contact me, I won't add it only because I don't want to assume your participation. I hope this will be a project we can all collaborate on together.

5 comments:

bobdobleApril 21, 2009 at 7:50 PM
Kellie, when the show the Doctor's first came out I sent a message on their website with question of how can we educate more on CDH. It's a show that is not only shown in the US but up here in Canada as well. If we bombarded them with information, maybe they could do a show strictly on CDH??!! They never got back to me, and I didn't want my 'question' to be a 15 second blerb either. I also didn't want it sugar coated the way that these other networks that have used CDH in their episodes have made it like it's not that serious. When we all know it is. Anyways, that's just an idea to include the Canada side of things??!! Bobbi
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Maxton's MommyApril 21, 2009 at 8:03 PM
I have previously emailed several different shows. I like the idea of all the turquoise envelopes. If you need help organizing this, I am willing to do whatever. As far as when to do it, I am not sure. I do think picking a day to mail them all is a great idea. I would think they will notice a bunch of turquoise envelops all on one/two days!
Ash
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AnonymousApril 21, 2009 at 8:14 PM
There's a place on Oprah's website to suggest topics for shows. I put in a submission, referencing your blog, about CDH. If they get enough CDH suggestions, maybe they'll take action. Good luck!

http://www.oprah.com/contactus
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LindseyApril 22, 2009 at 5:46 AM
Hey Kellie, we will gladly help support you guys, and will take part in the mailing in honor of Carter! I'll keep following this blog as well for information on when.

Lindsey
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KarenApril 29, 2009 at 6:08 PM
I like it! This is a great idea. I have been wondering how more people can be educated and also where to start.
Karen
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Add comment

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.