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Pediatric CHD question???

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Posted 4/16/2014 3:48 PM (GMT 0)
I have a daughter who is pregnant with a child who has been dx'd with Tetrology of Fallot syndrom. She is at Oakland California's Childrens Hospital----The doctors are fairly upbeat in the evaluatoon so far--- I can see from my early research that the center and the experience of the surgeon can certainly be outcome determanitive in many ways and in particular post surgical problems years later with leaky valve issues------ Does anyone out here know about this Oakland hospital and any general ideas?
Posted 4/16/2014 7:24 PM (GMT 0)
craig10

I am sorry to read of your daughter's heart problem.  I have no personal knowledge of this particular hospital.

Perhaps another member will come forward and talk with you.

Kindly,

Kitt

Posted 4/16/2014 8:30 PM (GMT 0)
Craig, the good news is that treatments for TOF have advanced greatly in the past few decades. If you haven't already accessed this web site, it has a lot of really good information:

/www.nhlbi.nih.gov/health/health-topics/topics/tof/

If you know the name of the surgeon who will be treating your grandchild, it may be informative to google his or her name, also.

Best wishes to you and your family as you move forward to face this new challenge.
Posted 4/19/2014 6:13 PM (GMT 0)
I've heard good things about Oakland. I work for a Pediatric Hospital in Atlanta, as a fundraiser, so I only really know the fundraising staff there.

However, below is the list of the top ranked pediatric heart programs in the country. I work for #4 Children's Healthcare of Atlanta. I was a patient there from 1980 until 1994 when I aged out. I still see a cardiologist and surgeon from Children's through a partnership with Emory University Hospital (Adult Congenital Heart Disease clinic). I do not have TOF, I have bicuspid Aortic valve disease. I do have a friend whose son has TOF and had surgery to repair at 3 months in Atlanta. He's doing awesomely!

Finding the doctors, surgeons, you trust who specialize in the diagnosis can relieve a lot of stress. If you are able to travel, you may look into some of the programs listed below. Most importantly is that you are at a Children's hospital and not an adult hospital with a pediatric department.

http://health.usnews.com/best-hospitals/pediatric-rankings/cardiology-and-heart-surgery
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