Posted (Tina) in All Posts on April-6-2007

I have been scouring the internet for hours.  Mostly, some of the big name hospitals show up with links to their info pages on CDH.  But when you begin to read, there is not much hope.  Everything out there seems pretty bleak and discouraging.

University of San Francisco is into experimental treatments with in-utero surgery: Risky and not proven to have higher survival rates.  Other hospitals that seem to have programs: Cincinnati, Philadelphia, Boston, and Columbia.  Again, nothing with any true hope about a higher survival rate or quality of life.  Everything is pretty much telling us that it is high risk, severe, and that at best, a 50/50 chance of survival.

Buried on the 2nd or 3rd page of organic search results, I finally come across something different.  It is about the program at Shands Children’s Hospital in Gainesville, FL.  Even their website for the program mentions, “Nationally, 50 percent or more of the affected babies die in the first days or weeks of life. There is considerably more hope for these unborn babies at Shands Children’s Hospital at the University of Florida.  Since 1992, the CDH survival rate at Shands Children’s Hospital is unprecedented. According to the Annals of Surgery (September 1999), the survival rate was 89% (47 of 53) of treated patients and 92% (23 of 25) of consecutive patients with isolated CDH who were both born and treated at Shands Children’s Hospital.”  This was my first breath of fresh air.  Then, there was an audio file…I listened.  It talked about a child born with a severe diaphragmatic hernia and how he had survived, thanks to the talent of Dr. David Kays, pediatric surgeon. 

From there, I heard on the audio file that the parents had set up a support group called Kay’s Kids, named after the doctor that had saved their lives.  I went to the site.  Then, I began reading story after story about the amazing journey of these parents and how they cannot imagine taking their child to any other place for birth and surgery.  Most of these stories were traumatic with details, but many ended with these parents having healthy children in their lives.  I read a few more stories and tears began to well up in my eyes.  This was the breath of fresh air that I needed – – there was hope.  Although we have no guarantees, it seems like there is a doctor out there who wants to try and help you save your child and is not promoting termination.  Also, that we are not alone — there are plenty of parents that have gone through something similar.

I ran to the other room, where Josh was watching TV, and started to share with him what I had discovered.  He started crying too.  At this point, we have no idea what God has planned for this journey.  But we know that His plan is the best.  At least there was some hope to be found…thank God for the Internet!

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