Thursday, January 1, 2009
FORM LETTER
To Oprah and the producers of the Oprah Winfrey Show [or To Ellen and the producers of The Ellen Degeneres Show],
I'm writing to you tell you about an extremely devastating birth defect known as Congenital Diaphragmatic Hernia, or CDH. To be born with CDH means your diaphragm didn't form correctly, or sometimes even at all, before birth. The diaphragm is the big muscle that separates your heart and lungs from your abdominal organs (stomach, intestines, liver, etc.).
Normally the diaphragm forms in healthy babies between 7-10 weeks gestation. When the diaphragm doesn't form, those abdominal organs are free to move into the chest of the developing baby, pressing on the heart and lungs and greatly inhibiting their growth and function. The effect of this is often fatal. Only 50-60% of babies born with CDH will survive. Yes, you read that right - a 50-60% survival rate, even with the best that medicine can offer!
Before this letter, had you ever heard of CDH before? You're not alone if you answered "no". Most people have never heard of CDH until their baby, or a friend or family member's baby is diagnosed. So you're thinking..."CDH must be rare if most people have never heard of it", right? Here's where you want to answer "no". CDH is NOT rare! Although, surviving it could be considered rare. CDH occurs just as often (1 in 2500 births or 1600 babies each year in the U.S.) as Spina Bifida and Cystic Fibrosis, but the outcome of CDH is frequently much worse. We HAVE to change that!
The median age of survival with Cystic Fibrosis has doubled in the last 25 years. The life expectancy with severe Spina Bifida (96% of all Spina Bifida cases are severe) used to end in childhood. Just in the last 20 years, individuals with Spina Bifida are living fuller, longer and more productives lives than ever thought possible and now have a near normal life expectancy. Why is this? Research, education, and medical advances make this kind of progress possible.
CDH first appeared in medical literature in the early 18th century. The first successful surgical treatment was in 1902. Now, more than 100 years later, even with all of our medical advances, the survival rate remains a dismal 50-60%.
Since current medical advances have failed to make much of an impact on the CDH survival rate, it's clear that more research is needed. It is my sincere hope that The Oprah Winfrey Show [or The Ellen DeGeneres Show] will advocate for families affected by CDH by helping to increase awareness of CDH in the public. CDH awareness leads to education about this horrible defect. Education leads to more research. More research leads to better treatments, even a cure, and ultimately to prevention.
The Oprah Winfrey Show [or The Ellen DeGeneres Show] is a phenomenal platform for bringing attention to CDH and the effects it has not only on the families of those affected, but also on the healthcare community as a whole, and in turn the entire country. CDH babies are million dollar babies, meaning treatment of babies born with CDH costs upwards of one million dollars or more. For those families in our country lucky enough to have insurance, most plans have a lifetime benefit cap of $1 million. After that, parents of a CDH baby must self-pay their baby's medical expenses, or they may apply for public assistance such as Social Security or Medicaid.
Often times, parents of a CDH baby must miss work for very extended periods. The average hospital stay for a baby born with CDH is 3 months, although some stay for a year or more. Missed work results in decreased productivity, loss of wages and/or benefits, or even the loss of their job entirely. The impact this has on the rest of the community and country is paramount.
No one knows what causes CDH to occur. It does not discriminate with regard to gender, race, or socioeconomics. It affects us all! Please join us in our fight to beat CDH by bringing it, and the stories of some of the thousands of families it has affected, into the homes of millions of Americans.
Sincerely,
[Your Name and Blog Address]
I'm writing to you tell you about an extremely devastating birth defect known as Congenital Diaphragmatic Hernia, or CDH. To be born with CDH means your diaphragm didn't form correctly, or sometimes even at all, before birth. The diaphragm is the big muscle that separates your heart and lungs from your abdominal organs (stomach, intestines, liver, etc.).
Normally the diaphragm forms in healthy babies between 7-10 weeks gestation. When the diaphragm doesn't form, those abdominal organs are free to move into the chest of the developing baby, pressing on the heart and lungs and greatly inhibiting their growth and function. The effect of this is often fatal. Only 50-60% of babies born with CDH will survive. Yes, you read that right - a 50-60% survival rate, even with the best that medicine can offer!
Before this letter, had you ever heard of CDH before? You're not alone if you answered "no". Most people have never heard of CDH until their baby, or a friend or family member's baby is diagnosed. So you're thinking..."CDH must be rare if most people have never heard of it", right? Here's where you want to answer "no". CDH is NOT rare! Although, surviving it could be considered rare. CDH occurs just as often (1 in 2500 births or 1600 babies each year in the U.S.) as Spina Bifida and Cystic Fibrosis, but the outcome of CDH is frequently much worse. We HAVE to change that!
The median age of survival with Cystic Fibrosis has doubled in the last 25 years. The life expectancy with severe Spina Bifida (96% of all Spina Bifida cases are severe) used to end in childhood. Just in the last 20 years, individuals with Spina Bifida are living fuller, longer and more productives lives than ever thought possible and now have a near normal life expectancy. Why is this? Research, education, and medical advances make this kind of progress possible.
CDH first appeared in medical literature in the early 18th century. The first successful surgical treatment was in 1902. Now, more than 100 years later, even with all of our medical advances, the survival rate remains a dismal 50-60%.
Since current medical advances have failed to make much of an impact on the CDH survival rate, it's clear that more research is needed. It is my sincere hope that The Oprah Winfrey Show [or The Ellen DeGeneres Show] will advocate for families affected by CDH by helping to increase awareness of CDH in the public. CDH awareness leads to education about this horrible defect. Education leads to more research. More research leads to better treatments, even a cure, and ultimately to prevention.
The Oprah Winfrey Show [or The Ellen DeGeneres Show] is a phenomenal platform for bringing attention to CDH and the effects it has not only on the families of those affected, but also on the healthcare community as a whole, and in turn the entire country. CDH babies are million dollar babies, meaning treatment of babies born with CDH costs upwards of one million dollars or more. For those families in our country lucky enough to have insurance, most plans have a lifetime benefit cap of $1 million. After that, parents of a CDH baby must self-pay their baby's medical expenses, or they may apply for public assistance such as Social Security or Medicaid.
Often times, parents of a CDH baby must miss work for very extended periods. The average hospital stay for a baby born with CDH is 3 months, although some stay for a year or more. Missed work results in decreased productivity, loss of wages and/or benefits, or even the loss of their job entirely. The impact this has on the rest of the community and country is paramount.
No one knows what causes CDH to occur. It does not discriminate with regard to gender, race, or socioeconomics. It affects us all! Please join us in our fight to beat CDH by bringing it, and the stories of some of the thousands of families it has affected, into the homes of millions of Americans.
Sincerely,
[Your Name and Blog Address]
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