Join us this week as the family of Evie Kornegay shares their family’s journey with CDH after their daughter, Evie, was diagnosed with CDH.
Tune in at 6:00 pm EST, September 7, 2021 to https://www.blogtalkradio.com/cdh/2021/09/06/september-6-2021-guest-james-kornegay.
Listen to archives of the show at http://www.cdhradio.org.
James shares when he first heard about CDH, “we found out that Evie had CDH at our normal anatomy check. The first doctor just did the lung/heart ratio and gave us a very poor prognosis. We then went to Shand’s Hospital in Florida and CHOP in Philadelphia. Both gave a better prognosis, but a few weeks after our appointments, Evie started to have some fluid build up. We had to have an in-utero surgery at CHOP to drain off some of the fluid. From that point on, my wife was on bed rest. Evie came via C-Section in the evening. In the middle of the night they had to do surgery to put her on ECMO. Unfortunately after several days of being on ECMO she developed a brain bleed and had to be taken off.”
Evie passed away when she was 12 days old. James mentioned, “I think our grief has come in waves, sometimes hitting us unexpectedly, or causing us to deal with it in different ways. That’s an ongoing process.”
James is an Executive Board member here at CDH International. He shared, “we got a lot of guidance from CDHi when we were first diagnosed. With a condition so rare, it was difficult to even find doctors or medical professionals who could help point us in the right direction. CDHi didn’t tell us what to do, but they did help us consider our options, and at least let us know we weren’t alone.”
If you would like to share your story with CDH, please visit https://cdhi.org/shareyourstory/.