If you are a newly diagnosed family I suggest you do a lot of research. There are national rankings for pediatric cardiology centers that are very helpful. Don’t let the idea of traveling to a far away center put you off if your local center ranks poorly. For us I have no doubt Macsen is still alive because we have always tried to find the very best surgeons and operative teams. The year we used our local children’s hospital Macsen almost died because they turned off part of his heart pacing and watched him decline over the course of 6 months. Boston was able to find the problem in seconds and fix it but extensive damage had to be done.
A good place to start is to look up rankings on US News and World report. Look specifically for pediatric cardiology rankings. One center may be wonderful for oncology or nephrology but not good at all for cardiology. Look at surgical volume and survival rates. If your local team fights you on going to a different center they are not a good fit for you. The best centers are confident and will help you do what you need to do to get the best care for your child. The arrogant ones that resent us “doctor shopping” are always the ones that have let Macsen down.
http://www.mindthesciencegap.org/2012/03/08/when-it-comes-to-heart-surgery-sometimes-quantity-is-quality/ that stated :
Some studies have focused on specific operations that are especially complicated. Children born with a type of heart defect called hypoplastic left heart syndrome require several surgeries done in sequence. The first operation is called the Norwood procedure. One study in 2005 and another in 2008 found that survival rates after this procedure were higher in hospitals that performed the operation more often.
Here is a more recent article from October 2013 http://www.news-medical.net/news/20131024/Multi-center-study-finds-causes-for-neonatal-mortality-in-infants-with-HLHS.aspx
Macsen needs all the hope and help he can get and we'll chase those higher survival rates at top centers.
What is HLHS?
http://www.chop.edu/service/cardiac-center/heart-conditions/hypoplastic-left-heart-syndrome-hlhs.html
Macsen needs all the hope and help he can get and we'll chase those higher survival rates at top centers.
What is HLHS?
http://www.chop.edu/service/cardiac-center/heart-conditions/hypoplastic-left-heart-syndrome-hlhs.html
My husband and I actually choose Penn State Children's Hosp. We were thinking of CHOP as well but we went to Penn because the 2 Heart surgeons there are an amazing team. I know that CHOP is ranked very high so that was a great choice. I currently live in NC right now and it was amazing that the Military was willing to pay for the trip to PA. Best of luck to you. I have pictures of Marcus, our son, on my facebook take a look at them while he was in the hospital. Some of the pictures are hard to look at but when you are the parents its much different. https://www.facebook.com/ChrisnMaureenRiddle
ReplyDeleteBest of LUCK!
Maureen