[tri-med] Re: experience with FL hospitals?

Here's a website of little angel Emma Grace 
http://www.emmagrace.netfirms.com/
 Her parents are in Naples and they may be able to help out. 
I forwarded your email to Bess.
 Best wishes on getting the answers you need.
 Debbie, mom to Baby Claire (T18)
http://www.debbwebb.com/Claire/
Experience is something you don't get until just after you need it.

 On 7/24/05, Courtney & Terry Holihen <holihen407@xxxxxxxxxxx> wrote: 
> 
> 
> 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 <http://www.trisomyonline.org>
> Families Helping Families On-line
> 
> 


-- 
Time flies when your having rum.
Sleep is for Pansies.

Faith sees the invisible, believes the incredible and receives the 
impossible!
If you want the rainbow, you gotta put up with the rain.

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

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