If your child says he experiences PE-related discomfort, believe him, and insist that the doctors you see take it seriously too. Inform yourself before you see any doctor, and go prepared to give him copies of any article you feel helps state your situation and the corrective surgery you want done.
By all means get any lung and heart function tests done that the doctor suggests -- even if they fail to show the real nature of your child�s discomfort, they can at least reassure the surgeon that there are not other heart or lung problems involved. Ask your doctor about Marfan Syndrome, an inherited condition that involves faulty bone and cartilage formation and that often has PE as a symptom.
If you want to go to the USA for the less invasive surgeries, fax or call the doctors involved. If you want to get the repair done in Australia, the one surgeon I�m certain of is the one we used, Mr. Keith Stokes.
In Australia:
Mr. Keith Stokes, Paediatric Surgeon
Children�s Specialist Centre
3rd Floor, Front Entry Building
Royal Children�s Hospital
Parkville VIC 3052
Phone:(03) 9347-5724
(03) 9345-5289
fax: (03) 9347-6806
He did an excellent, careful job on Gina. He does around 7 PE corrections a year, on a mixture of children and teenagers, usually at the Royal Children�s Hospital.
Otherwise, I�ve also heard that there are two doctors in Sydney NSW who may do PE surgery: Dr. John Harvey and Dr. J. Pitkin, both of New Children�s Hospital at Westmead, Sydney. We talked to Dr. Matar from Brisbane QLD as well but he was frank in admitting that he mostly did cosmetic surgery on mild cases, and wasn�t familiar with the internal support we knew Gina needed.
In New Zealand:
Dr. Singh
Phone:
Fax:
E-mail:
Dr. Eric Fonkalsrud
Dept. of Surgery, UCLA Medical Center
10833 Le Conte Ave.
Los Angeles, California 90024 USA
Phone: (310) 825-6712
Fax: (310) 794-9462
E-mail: [email protected]
Dr. Walter Pegoli
Phone: (410) 955-1983
Fax: (410) 550-5314
E-mail:
Dr. Arnold Leonard, General Thoracic Pediatric Surgeon
Riverside Professional Building
606 24th Ave.
S. Minneapolis, Minnesota 55454 USA
Phone: (612) 341-9498
Fax: (612) 341-2659
E-mail: [email protected]
Dr. Donald Nuss
Children's Hospital of the King's Daughters
601 Children's Lane, Suite 5B
Norfolk, Virginia 23507 USA
Phone: (757) 668-7703
Fax: (757)668-8860
E-mail:
Dr. Sydney A. Haje
Direct correspondence to his home address:
SHIS QL 12 conj 10 casa 18
Brasilia DF 71630-305 Brazil
Phone: +55 (0) 61 985-8318
Fax: +55 (0) 61 248-6304
E-mail: [email protected]
No worldwide list of surgeons or hospitals involved in PE corrective surgery exists. Looking in libraries and online archives for reports on PE surgery may give us leads we can follow in the search to find surgeons.
The following doctors have published articles on some aspect of PE surgery in the past several years, and have abstracts in the PubMed online archive. This is by no means a complete list -- but it's a start! Please send us any corrections or similar info you have found, and we'll add it to the list.
Each PubMed abstract mentions a medical institution which the authors are associated with. There is no guarantee that it is the hospital where the reported surgery took place, but it may be a good place to start your search from.