Two failure surgery

[Carlos Alberto]

I’m the father of Lia Gabriela who has a genetic disease called Chondrodisplacia Puntacta causing her kyphoscoliosis due to hemivertebrae. Her first surgery was at 16 month for fuse T8 - T12. The surgery absolute fails because of Staphylococcus Aureus sepsis. Then she used Boston brace until she was three years old when she was again surgery making her an instrumentation Luque (posterior two rods) from T1 to L1 and fusing her hemivertebrae. Again the surgery fails because of local sepsis staphylococcus aureus. And 8 month later the rods was removed. Even when fuse happens the correction was losing.
The doctors are planning a third surgery by anterior approaching for remove the main hemivertebrae and do an anterior fuse, this is taking away one or more ribs. They think on adapt her a titanium implant of adult cervical. The doctors told us that for child of 4 years nobody build implants around the world.
I do live in Havana, Cuba, and can’t have other medical opinion because there’s only one team able to do this surgery in the country.
I heard about Shrinners Hospital and visited they WEB pages. I noticed that some of you see yours relatives in USA Shrinner hospital. Can any of you help me reaching them? To evaluate my daughter. I have CAT, RMM and all X rays digital.
Can you tell me how much cost yours surgery in other USA hospitals and if there’s any organization that can help me in order to finance such kind of surgery.

I don’t have much time for decisions

Thanks for your help

[LindaRacine]

Hello Carlos...

I don't know if Shriner's treats patients from outside of North America, but it's worth a try. Their website address is http://www.shrinershq.org.

Also, you might want to check out FOCOS:

http://www.orthofocos.org/contact.htm

Regards,
Linda