Doctors, Families Rally for Cure for Deadly Birth Defect

Parent's Perspective News Report of Saint Louis Children's Hospital Press Conference

Tuesday, April 28, 2009

Today almost 5 families in the United States alone will receive the devastating news that their unborn child will have to fight for its life. They have been diagnosed with a potentially fatal birth defect called a congenital diaphragmatic hernia. A congenital diaphragmatic hernia is where the diaphragm in development does not completely close in an unborn baby and organs migrate to the thorax which under normal circumstances is where the heart and developing lungs are located. This defect has a profound impact on lung function.

Thirty-five (35) families a week. One hundred fifty (150) families a month. 1800 families a year. Congenital diaphragmatic hernia occurs just as often as spina bifia and cystic fibrois yet most do not hear of it until their child is diagnosed.

It doesn't just affect the baby, the mother and the father – it affects the whole family and the entire community. This baby will need Intensive Medical Care at a level three NICU with ECMO. The medical bills will total hundreds of thousands and quite often, millions of dollars. These are million dollar babies. The care to save their lives depletes blood supplies at local blood banks – one infant required 6 gallons of blood and blood product in 38 days. Some families will be financially depleted due to the long term care of these children or other costs associated with one or both parents without a job. Without benefits, Medicaid takes over and covers costs. Some families require state and government assistance for short periods of time. This has an effect on communities. Some insurance companies have "Lifetime Caps" and these children reach them very quickly. These children require insurance to provide the therapy they need so that they can accelerate and thrive.

What can you do to help save these babies? What will help these families? What can you do to make a difference?

1. Learn about congenital diaphragmatic hernias.
2. Donate blood regularly, if you can, to your local blood centers to help ensure all patients receive the blood they need.
4. If you are looking for a cause to help with – we would welcome your assistance!
5. Wear turquoise on March 31, 2010 for Congenital Diaphragmatic Hernia Awareness Day! When someone asks what it's for – tell them! Or wear it every day!

written entirely by Elizabeth Doyle-Propst - updated - thank you Jes! 4/28/2009...from 10/27/2007


People have asked about the Statistics here and I need to thank Jessica, ^Parker's^ Mom for making me review them.

So Math is going to be done here...

We found that the "the US Population (2007 est.): 301,139,947 (growth rate: 0.9%); birth rate: 14.2/1000; infant mortality rate: 6.4/1000; life expectancy: 78.0; density per sq mi: 85 "

So I took the number 301,139,947 and divided it by 1000 and then multiply that by 14 because the birth rate is 14.2/1000 people this equals to 4,215,959 births - this is an estimate.

And if you divide the 4,215,959 by 2000 that would be 2107 - CDH births per year. This would be 5.77 per day - or average of 5 a day - which means that 5 families are given the diagnoses every day on average. An average of 35 families a week, 152 a month - these are averages.

The issue we have found with the population statistics, birth defect statistics and the actual reporting of even deaths and causes of - they are not to the exact number. They are averages. Each State reports births, deaths and causes of and birth defects differently. They have their own criteria. It all comes down to averages or the best educated guess at the time.

Our best educated guess using the average statistics that are out there - it is still too many infants who die of CDH every day. The overall survival rate of congenital diaphragmatic hernia is 50% - so if 5 are born, diagnosed a day this means the average of those who die per day is 2.5 - or over 900 ever year.

We may never fully understand the cause of congenital diaphragmatic hernia, it is a multi factorial condition, there are many factors that may cause it to happen. They believe it may be due to many different genes from both parents as well as environmental factors that are not fully understood.

So here and now - we need to know how to manage these babies being born for better survival rates and also better care so these children have interventions and therapy early to help with the quality of life for them and their families. More funding needs to go to the doctors, researchers and Medical Centers who are doing the actual Medical Research to help further these goals. So that one day, doctors and nurses - with all the technology will have more that will save these babies. It takes time to research these things.

It is very hard to have patience when it appears more and more families are having to say goodbye to these precious babies.

Sunday, April 26, 2009


“The men the American people admire most extravagantly are the most daring liars; the men they detest most violently are those who try to tell them the truth.” - Henry Louis Mencken

Wednesday, April 1, 2009

Kim Weiss Photography - CDH Awareness Day Photos...

A wonderful photographer was at Saint Louis Children's Hospital - Kim Weiss and she posted photos and her impression of the day - Titled: did you know? [St. Louis Child Photographer] Click there to go see the amazing work she does.