I also emailed a doctor I read great things about, Dr. Kays, who is the Chief Pediatric Surgeon at Shands Children's Hospital in Gainesville, FL. I know this is VERY FAR from where I live but his stats show a 92% survival rate for CDH babies. He emailed me back stating he was in the process of bringing all of their data up-to-date (over 200 cases) but gave me the following info:
Last death in Aug '09, a child with chromosomal defect who was not repaired and had support withdrawn. Death before that was a 32 week preemie with CDH. Of their last 34 consecutive cases, 30 patients survived to discharge. These patients had the full gamut of severity from mild to very severe. He also stated he does NOT select his cases. 95% of his patients are prenatally diagnosed, and they take everyone who wants to come, mild, severe, whatever. Therefore their survival data are not biased by selection.
Now who could not look into this? It makes it so hard having this information on my shoulders. On one hand I feel like going to Dr. Kays will give my baby the best chance at life, on the other hand, UCSF is a wonderful hospital and is capable of making sure my baby has the best care. Going to Florida would mean coming up with money to go now for an initial consultation and then going back in a couple weeks to live for however many months it'll take to get my baby healthy enough to travel home. I also have my other two kids to think about and who need me and family/friends I will need for support as well.
What does a mother do? I'm so afraid that if I choose UCSF and baby doesn't survive, I will be thinking I could have saved him by going to Florida.
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