Trach Plug

Hi Everyone,
Yesterday at my doctors appointment, my doctor told me that our son does not even have enough lung tissue really to even do an LHR. He has CDH on the left side, but the doc seemed to think there is not too much diaphragm there. He thinks we may be candidates for the trach plug. I know it is experimental and relatively new. Most of the research I am finding says there is no real positive or negative effect, that it just is. The doc is saying the best surgeon is in England, also another in SF. I was hoping that maybe someone else had decided to have the trach plug, and would share their story with me. I am pretty new to CHERUBS and have not figured out how to navigate through all of the great resources. I am waiting to hear if my insurance company will even pay for the surgery, and I am also trying to research and weigh the risks. I would appricate anyone's time. Thank you so much.

Tiffany-
I briefly researched the trach plug when my daughter was diagnosed. I remember reading one blog where it did seem to help expand the lungs, however, I can't remember the website. I will post it if I find it again. My daughter was not really a candidate for it so I didn't research it too in depth. My daughter was treated successfully by Dr. Kays in
Gainesville, Florida at Shands Hospital and at the same time we were there, there was another baby who was missing 85% of her diaphragm (her whole left side plus most of her right side!)! She survived and went home around the same time as us a healthy baby! Her blog is at www.oliviashope.org. If you are interested, you can e-mail Dr. Kays from the website realhopeforcdh.com (the link is on the left side of the page). Dr. Kays has a 92% survival rate for babies born at Shands and I cannot say enough good things about him and the care we received at Shands! I believe there are also great surgeons at USCF, Children's Hospital Cincinnati, Children's Hopsital of Boston, Children's Hospital of Pennsylvania, and Duke. Just don't give up hope and find the best care you can in the place where you are most comfortable with the program!

Hi Tiffany, I just sent you an email for Alina's blog. Also you can read more about the plug and experiences here on the boards. Go to the section Meet Our Cherubs, then go to More Medical Info. and Support and then to In Utero Proceduces and then there should be a post there. I hope Alex and Ingrid can provide you more info. and experience (their story) with having the plug procedure done.

Thinking of you and Jonathan and praying for wisdom and comfort for the days to come.