Letters for CDH: Back by popular demand

Wednesday, April 22, 2009

Back by popular demand

I tried to scrap this project but recieved mass objections :)

I put it back up, but with a few changes. Comments will be moderated and approved before posting and anonymous comments will not be accepted. If you want to add a comment and can't figure it out, email me at the address above and I'll add it for you. I also removed all supporters so that this is not affiliated with anyone. Just a website with an idea.

So here's the plan. If you don't want to participate, don't. I don't want to hear why, just move on.

We will send BLUE envelopes or postcards--you decide on the shade of blue you would like to use
We will randomly pick a date and I will let you know how that date is chosen
You can decide if you want to write a letter to include or just send empty envelopes

Jen had a great idea to come up with 5 facts about CDH and post them here. You can chose the fact(s) you like and write one on the back of each envelope/postcard. If you have a blog or Carepage or CaringBridge site, you can also include a link to it.

Feel free to link to this blog on your own sites, emails, etc.

9 comments:

Maxton's MommyApril 22, 2009 at 8:34 PM
sounds awesome Kellie :-) Looking forward to it.
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Maxton's MommyApril 22, 2009 at 8:51 PM
What if on the back we put something like

Approximately 800 babies will die from CDH this year!!!
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Ashworth FamilyApril 22, 2009 at 9:03 PM
We will do whatever we can to help. I am so glad you reconsidered :)
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Vince and PattyApril 22, 2009 at 9:17 PM
Thank you Kellie! I think that you have found a very diplomatic way to handle this and I have high hopes that it will truly make a difference!
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CindyApril 23, 2009 at 6:27 AM
Great idea! Once you decide on a date I'll start spreading the word.
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FerApril 23, 2009 at 6:40 AM
I am glad you are continuing with your project Kellie.
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Monica~ James~ ConnorApril 23, 2009 at 6:56 AM
I'm proud of you for taking the high road in all of this Kellie and for following your convictions in doing something good for all of these kids, and for making a difference. I know I don't have a CDH child, but I love Carter like my own, and I think it is sad that adults can't behave that way. Who are they really out there for? because from the outside looking in it doesn't seem like they really care about CDH families, only themselves. I say you do whatever it takes to make this work, and if they can't come together for an important cause like this, then they can just argue back and forth about the color of a stupid envelope and figure out who they are really fighting for while YOU are the one making a difference!!! Just all seems silly to me.
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Your Gospel-Loving FriendApril 23, 2009 at 3:43 PM
I must have missed the arguing post but I'm glad you're still doing it too- I posted yesterday about it asking my family & friends to help too so hopefully you'll get some more emails :)
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CDHi AdminApril 24, 2009 at 4:03 AM
WTG, Kellie! :)
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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.