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cdh is a devastating birth defect, killing half of all babies diagnosed. this project was created to bring families and friends affected by cdh together for a common project. please take a few minutes to educate yourself about cdh and the project by reading the information in the right-hand column.
This project is not affiliated with any single CDH Organization or Foundation. It is an independent venture, with the goals of raising awareness and, ultimately, increasing research. Any funds that may result from this project will be donated DIRECTLY to fund a CDH study at a major CDH center. If you have any questions or concerns, please contact us.
Contact Us
How Many Letters Did You Mail?
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.
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.
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.
FOR MORE INFORMATION ABOUT CDH
ELLEN DEGENERES
The Ellen DeGeneres Show
Attn: Fan MAil
PO Box 7788
Burbank, CA 91523 USA
Attn: Fan MAil
PO Box 7788
Burbank, CA 91523 USA
Oprah
To contact the Oprah Show, copy and paste the letter you have composed here:
https://www.oprah.com/ord/plugform.jsp?plugId=216
Be sure to include a link to this project and a link to your chosen website.
https://www.oprah.com/ord/plugform.jsp?plugId=216
Be sure to include a link to this project and a link to your chosen website.
THE ASSOCIATED PRESS
Headquarters
450 W. 33rd St.
New York, NY 10001
450 W. 33rd St.
New York, NY 10001
CNN
CNN NY
1 Chase Manhattan Plaza
New York
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1 Chase Manhattan Plaza
New York
NY 10005
Followers
About Me
- LettersForCDH
- To put it simply: we are two mommies of CDH survivors, Carter and Sofia, who put their heads together and created a project in which we can all participate.
Visitors Since April 21, 2009
blog roll
If you send me photos of you creating/mailing your Letters for CDH or phtotos of your Letters with your child, I will post them all here. This is just another way to put a face with a cause.
Kayla, CDH Survivor
Sofia's Letters
Sofia's Grandma
Leah, CDH Survivor
Carter, CDH Survivor
Charlie, CDH Survivor
Bodee, CDH Survivor
Bodee's Aunt
Kristen (Bodee's Mom)
Kristen's Paper Cut!
Dakota & Bodee
Into the Mail Box
Bodee's Grandparents
Bodee's Great-Grandparents
Levi
Dawn
Elk who watched the mailing of the Letters!
This comment has been removed by a blog administrator.
ReplyDeleteI think what you are doing is a great way to educate others on CDH. If there is anything I can do to help please let me know. You have our support.
ReplyDeleteKathy Melcher, mom to Kinley
Hi Kellie,
ReplyDeleteI think this is a great idea. How about the phrase, "A CDH baby has a 50% chance to live." Gets the same idea across...
Here's something I'm doing. I'm entering my state's Mrs. America contest. My platform will be CDH Awareness. I'm not entering to win, just to spread CDH Awareness, but if I win I could spread awareness at the national competition. The contest is 3 months away. What do you think??? I know your state has the same competition...
I think Megan's idea is awesome...Kellie, you should enter the Mrs. North Carolina pageant!! My cousin Cinamon (whose son is Preston) won it several years ago. By the way, the ideas are awesome and I plan to help any way I can! : )
ReplyDeleteMegan, that is great!!! One of our spokespeople for CHERUBS is Mrs. Durham, NC and she uses CDH for her platform all over the country and is in the NC pageant. How great it would be to have 2 people in the pageant using CDH as their platform! Love, love, love that you're doing this, Megan!!!!
ReplyDelete