Doctors, Families Rally for Cure for Deadly Birth Defect

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

Monday, June 16, 2008

Congenital Diaphragmatic Hernia Rare? Or Not?

I was astounded earlier this month when I was watching our local CMC Telethon to raise funds for the local Children's Medical Center. I wasn't in awe of the funds raised - something hit me hard. They featured a baby who was still in the NICU there but on his way home and he was recovering from a congenital diaphragmatic hernia. Now that wasn't what hit me. I know that there are at least 20 in the city I live who have had children with CDH. I know that we have members of the Breath of Hope Yahoo Group that live in the same town, some within driving distance of one another for a "normal commute".

What struck me was they referred to the congenital diaphragmatic hernia birth defect as "rare". Rare? I don't think so.

In March 2007, Stacy and I researched the statistics out there and we wrote the following which is copyrighted material:

Current statistics state that congenital diaphragmatic hernia birth defect occurs in 1 in 2,000 – 3,000 live births in the United States and accounts for 8% of all major congenital anomalies. With the rate of live births in the United States at 4,115,590 in 2004 (See, National Center for Health Statistics) this translates to approximately 1800 live births of the congenital diaphragmatic hernia birth defect per year. Cystic fibrosis, which occurs in 1 in 3,000 live births in the United States and spina bifida, which has an occurrence of 7 in 10,000 or 1 in 1478 live births. Currently, the general public has heard of both cystic fibrosis and spina bifida although congenital diaphragmatic hernia occurs just as often, with fatal results.
[© 2007-2008]

In 1999, when I was pregnant with my daughter the statistics for CDH stated it occurs 1 - 3,500 - 5,000. Has the occurrence increased? The birth rate really hasn't but the occurrence of CDH in pregnancies appears to have increased. Yet, we have broadcasts (granted the media) stating that congenital diaphragmatic hernia is "rare".

The survival rates of infants born with congenital diaphragmatic hernia is still generally the same too - 50% - and this is what may make it rare - that there are half the children who have had this birth defect each year surviving and growing up into our society. This is what makes it rare - the survival rates!

In almost ten years - the survival rates even with the gentle vent technique and various drugs that are now approved to use for these infants to overcome Pulmonary Hypertension. This must change. There is research looking at genes of the parents, child and siblings. There needs to be more research in developing treatments so that more and more of these children survive. Further this more research to develop plans to help these children who might have reflux, failure to thrive, eating issues, scoliosis and chronic lung issues.

It is not a rare birth defect. It is a rarely survived birth defect - based solely upon the numbers of approximately 900 each year.

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