[tri-med] experience with FL hospitals?

 
I was wondering if anyone has had any experience with any of the FL
hospitals.  We live in Naples and are expecting baby Gemma in early fall,
whohas Full Trisomy 13.  We want to aggressively treat her with the hopes of
getting her home.  She has possible Hypoplastic Left Heart Syndrome, a large
omphalocele, and possible kidney problems.  I have heard of several nearby
hospitals denying trisomy children of heart surgery.  The closest hospital
with a level 3 NICU is in Fort Myers and I was told they do not do heart
surgery, which Gemma will likely need in order to come home.  We are
originally from Orlando, and are willing to travel anywhere where we feel
shewould have a better chance, but would prefer to stay in state.  We will
also need an OB to deliver her where or near where she will be treated
preferably via C-section to optimize her chances of a live birth.      

  

Any recommendations on hospitals, neonatoligists, cardiologists, cardiac
surgeons &OB's would be much appreciated.  We'd also like to hear about any
of your experiences positive or negative at Arnold Palmer (Orlando), FL
South(Orlando), All Children's (St. Pete), Miami Children's.  Feel free to
e-mail us directly: holihen407@xxxxxxxxxxx  Thank you! 

  

Courtney and Terry 
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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