Monday, September 14, 2009

A nugget of info that helped us...

When we were making the tough decision on where Jaxson would be born, a Canadian friend of ours sent us this study about how survival rates were more favorable at hospitals that saw a high volume of CDH cases. Here's the link to the study: http://www.jpedsurg.org/article/S0022-3468(04)00040-5/abstract.

Children's hospital here in Pittsburgh sees 12 CDH cases on average every year (as of 2008) and CHOP's number of CDH cases was around 45-50 when were were researching hospitals. CHOP's number may be different now, I don't know for sure. We had many reasons for choosing CHOP, but one was this info about high-volume vs low volume.

We asked all of the hospitals we researched: how many CDHers they treat a year, what is their survival rate, and what is their ECMO philosophy (this was a huge decision factor for us). Anyway, just wanted to share because I forgot about that particular study!
Posted by Sarah and Barry Mayer at 10:27 AM

1 comment:

  1. KateSeptember 21, 2009 at 10:32 AM

    Oh my, they told me they seen like 30! Boy, are they full of poop! LOL!!

    So glad to see you on here! Glad Jax's surgery went well. You are always in my thoughts and prayers!!

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Welcome Jaxson's CDH Journey

Jaxson is a CDH survivor and this blog follows his story and our ongoing efforts to spread the word about CDH.

Jaxson was diagnosed with LCDH at our 20 week ultrasound. His stomach, intestines, spleen, apendix and left lobe of the liver had all herniated into his chest cavity. We were told his chances of survival were less than 50% and that he had an 80% chance of going on ECMO.

He was born at Hospital of the University of Pennsylvania and transported next door to CHOP on 5-19-08. He did not go on ECMO, had his repair on 5-23-08, came off the ventilator on 6-6-08, breathing on his own by 6-12-08 and was discharged after 37 days in the NICU.

He is our CDH rock star!