Welcome to CDH Rainbows!

Formerly A Rainbow of Hope: CDH Awareness

Please see the sidebar for News & Updates!

If you have found this website, you probably know or knew a person with CDH. Or maybe you were born with it. You might be expecting a child diagnosed with CDH. Or you are a friend, family member or stranger touched in some manner by this birth defect. Or you just wish to expand your knowledge on a birth defect that occurs about as often as cystic fibrosis yet is still largely unknown by the general population. The purpose of this website is to provide information and maybe some comfort.

All of the information found here was compiled from various sources; the main source being the doctors, nurses and surgeons who treated my son in his battle with a congential diaphragmatic hernia. These knowledgable professionals are located at The Children's Hospital at OU Medical Center in Oklahoma City, OK. Information has also been obtained from various FAQs and medical resources. Links to these resources can be found in the Links section of this website.

There is an attempt to keep the presentation of material here fairly simple with a minimal amount of complex medical terms. However, many terms cannot be avoided and if you are dealing with CDH firsthand, you probably recognize many, if not most, of them. Much of the information found here is directed toward parents of CDH children but can be adapted for friends and family members or your specific situation.

Important information to know about CDH

If you come away from this website learning only one thing, it should be the following: congenital diaphragmatic hernia (CDH) is a birth defect that occurs in approximately 1 in 2,000-3,000 births.

Think about that for a moment--1 in 2,000-3,000 live births. That statistic does not include those families who chose termination. Including those fetuses would likely increase the above stated statistic. The survival rate for children born with CDH is still not great, maybe that's why it is not as well known as some other defects. Even without including those fetuses terminated, the rate at which CDH occurs suggests that it is not an especially rare birth defect but a fairly common one.

Disclaimer

I am not a medical professional nor an expert of any kind. I am just a parent who lost her son to CDH and hopes to help others. Everything on this website is for informational and/or educational purposes only. There is no intention to promote any kind of treatment for any medical issue. Nothing here is intended to be used in place of proper medical care and advice.

This website is not formally associated with any other medical, informational and/or CDH website or organization; it is the creation of one person as a stand alone website.