Letters for CDH: Phrases for the postcard/envelope

Thursday, April 23, 2009

Phrases for the postcard/envelope

We need suggestions for what to put on the postcard/envelope. It should be a short, one-liner fact about CDH. What I'm invisioning is have the phrase, then below it something like "For more information about CDH, please vist [insert your blog/website/website of choice]" If you represent a child you could also add a short line something like "In honor of Carter" I'll also need help finding the sources for true facts to include.

Some suggested phrases:

Every year 800 babies will DIE from Congenital Diaphragmatic Hernia
X number of babies will DIE today from Congenital Diaphragmatic Hernia. What have you done today? [I don't know that statistic, so I'll have to find it]
What is Congenital Diaphragmatic Hernia?
HALF of all babies diagnosed with Congenital Diaphragmatic Hernia will DIE

Let me know what you think and what your suggestions are. We can pick the top few and offer those up for everyone to put on their mailing.

Someone also suggested not only mailing these in bulk to a chosen few, but also make enough for your local community. They can be distributed to churches, OB/GYN offices, hospitals, etc.

14 comments:

kmm0305April 23, 2009 at 12:40 PM
Maybe a statement like "Have YOU heard of congenitial diaphragmatic hernia? Neither had I until (insert date of finding out)" Word some of the statements so it is addressed directly towards a recipient. Kind of like getting those ads with a post-it note that looks like it is handwritten. ;)
ReplyDelete
Replies
kmm0305April 23, 2009 at 12:42 PM
Maybe word some of them directly at the recepient like "Have YOU heard of congenital diaphragmatic hernia? Neither had I until (insert date of diagnosis)."
ReplyDelete
Replies
Maxton's MommyApril 23, 2009 at 1:03 PM
I like the 800 a year because it sounds most dramatic to me.

Ashley
ReplyDelete
Replies
CDHi AdminApril 24, 2009 at 4:06 AM
- Over a half million babies have been born with CDH since 2000

- Over 1600 babies a year are diagnosed with CDH in the U.S. alone

- every 6 minutes a baby with CDH is born

- Half of these babies will not survive

- The cause is not known

There are a ton on our blog, feel free to use any of them!
ReplyDelete
Replies
CDHi AdminApril 24, 2009 at 4:11 AM
You might want to stay away from confrontational statements like "I'm Aware. Are you?" or "What have you done today?". It's better to engage interest.

For example, if you got a postcard with "What have YOU done for victims of rhabdomyosarcoma?" You don't know what that is, it hasn't affected your life and now some piece of paper is making you feel guilty that you're not saving people from it? It goes in the trash...

BUT something like "Over half a million babies...."... ???? Half a million babies? What is this? Why haven't I heard of this? I need to read more..."

JMHO. :)
ReplyDelete
Replies
MarionApril 24, 2009 at 6:37 AM
I have heard the stat that a baby is born every 10 minutes with CDH( Not sure if it is accurate) It would get attention if we put "a baby is born every 10 mins with CDH and half will not survive"
ReplyDelete
Replies
MarionApril 24, 2009 at 6:49 AM
Kelli,

I actually did a little math and according to the stats that 1600 babies are born each year with CDH. It comes out to a baby being born every 5.5 hours with CDH, so we could use the phrase that every 11 hours a child will die from CDH. When you put it like that it is really shocking. Also, loet me know if you need any help. I am willing to help in any way!

Marion
ReplyDelete
Replies
the swain'sApril 24, 2009 at 9:16 AM
I would like to help, please let me know what you need me to do. I am not working now so I have plenty of time to help. I am Addison Acord's grandmother(Marion's mom). I don't want another family to go through want we have been through because of CDH. People need to know about this so we can find a cure.

Ann
ReplyDelete
Replies
the swain'sApril 24, 2009 at 9:17 AM
I would like to help, please let me know what you need me to do. I am not working now so I have plenty of time to help. I am Addison Acord's grandmother(Marion's mom). I don't want another family to go through want we have been through because of CDH. People need to know about this so we can find a cure.

Ann
ReplyDelete
Replies
JodyApril 24, 2009 at 3:40 PM
Dawn's list really did get my attention. Inform people. I had never heard of this birth defct until Kinley (Seep Melcher) was diagnosed. How many people heard of this before it affected their lives?
ReplyDelete
Replies
LettersForCDHApril 24, 2009 at 8:07 PM
Jody: I can probably speak for most of us--we did not know about CDH until our children were diagnosed. In fact, our OB office had only seen one other CDH baby in all the many years of existence. Our pediatric office only has one other CDH patient.
-Kellie
ReplyDelete
Replies
Maxton's MommyApril 24, 2009 at 8:14 PM
I actually had to explain to several of the doctors in my OB practice what CDH was. They were not aware just how life threatening it is! Of course, my OB office sucked and I will never go there again but still...
ReplyDelete
Replies
Alison, Chris, Davis and Ryan CieszkoApril 25, 2009 at 10:33 AM
Half of all babies diagnosed with Congenital Diaphragmatic Hernia will die. What is Congenital Diaphragmatic Hernia?

"Half" is always impressive when you're trying to get a point across.
ReplyDelete
Replies
UnknownMay 4, 2009 at 6:41 AM
I too had to explain to many doctors about what CDH is. We have to figure out a way to get this to be more known. How about Oprah. Has anybody written to her?
ReplyDelete
Replies

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.