CDH Awareness Day

Thursday, April 19th you probably don’t know, is CDH awareness day. There is so much awareness talk out there now that it is easy to get very blasé about the whole thing. CDH is one of those that really needs the extra attention. Congenital Diaphragmatic Hernia occurs in 1 of every 2,500 births, about 1,600 cases in the US each year. The cause is not known.  It occurs about as frequently as spina bifida and cystic fibrosis, but there is very little research and almost no media coverage.

As I have been told again and again, by doctors as well as parents of survivors; is that every CDH baby is different. One of the most difficult things for me with this condition is that there is really no ‘standard of care’. Standards of care are what drives medical care; one of the priorities of my job as a nurse is to educate people on their conditions standard of care: the lab tests, medicines, and exams they need to keep their condition in check. CDH does not really have a well-known path to follow like in other conditions. Lung to head ratio, MRI, and some oxygen studies are done to determine severity; but all doctors, even experts, admit that these are not definitive tests. You really don’t know what you are going to get until the baby is born, and you see how they respond. It is the medical equivalent of grabbing at straws.

It makes sense in a way then, that in our experience of seeking care, we have a team that says our child has little to no chance of survival, and another that gives a much positive outlook. I have talked to many parents who were told there was no hope, they were encouraged to terminate the pregnancy, to carry the baby to term only to be an organ donor, only to go on and find appropriate care; now their children are in school, in college, thriving. And these are only the ones who actually did seek out additional care. How many, I wonder, accepted what they were told, and terminated their pregnancies, planned a funeral before their little one was born?! Often this condition goes undiagnosed until birth; how many delivered their babies at facility that could not handle them, and they died, suffocating?

More research needs to be done. Standards need to be set. This process should not be so difficult. I have said many times during this process that I don’t know how non-medical people do this: there is so much to take in! The tools to care for CDH are not any different to what is found in any level 3 NICU in the country, it is just the technique. No one should have to travel so far away from home just to give their CDH baby a chance at life.

For more information on CDH, click on the link in the previous post. To help drive research, please click on this link:

http://www.cdhdonations.org

To participate in the virtual Parade Of Cherubs on Thursday, April 19th to help spread awareness:

http://www.facebook.com/CherubsVirtualParade