CDH Awareness....

What is CDH? Congenital Diaphragmatic Hernia is a rare and often fatal birth defect that affects about 1,800 families a year. CDH occurs when the diaphragm fails to fully form, allowing some or all of the abdominal organs to migrate into the chest cavity, inhibiting lung growth. 50% of these babies will not survive. As you all know, Jaime has right-sided CDH, his liver and intestines were in his chest and he has a small right lung, in additional to multiple other health issues.

Having said all of that, some people have different ideas as to when or how to promote Congenital Diaphragmatic Hernia Awareness...there is no definitive answer, as awareness really is done year round. However, there are some organizations that have selected March 31st as CDH Awareness Day. I belong to these organizations, as well as a few others. I, too, am planning on "celebrating" this day, but I am also going to take the whole month of March to spread "extra" awareness about this horrible birth defect.
One of the things that we'd like to do in honor of CDH Awareness Month, is create a package to deliver to Cincinnati Childrens' Hospital's Regional Center for Newborn Intensive Care (RCNIC). The RCNIC cares for anywhere from 20 to 30 CDH babies a year. We are asking for new or homemade baby quilts, or small blankets (ones that the babies can hold and "cuddle" with....Jaime received 3 of these during his NICU stay, and loves them to this day). Jaime spent a total of 127 days in the RCNIC over his two admits; we thought what better way to honor Jaime and to spread awareness, then to show our support to the hospital who saved his life?!? If you are willing and able to donate, please contact me via email at sltrost@yahoo.com for information on where to send your donations. We have a planned trip to go to Cincinnati early in April, at which time we will deliver the package.
I hope that you will join us in spreading awareness about CDH this month, as well as wear turquoise on March 31st in support of Jaime and his heavenly and earthly CDH Friends. I do have additional information and awareness pins from Breath of Hope, Inc (http://www.breathofhopeinc.com) if anyone is interested, I'd be happy to share them with you, just let me know!
As always, we thank you for your support and again, hope you will be able to join us in celebrating this very special event!