Recommended Doctors and Hospitals
From ShortGut - Wiki
Strong Recommendations
The following doctors come strongly recommended from multiple families on the yahoo short bowel syndrome group -- doctors worth driving hours or relocating for:
- Mark Puder and Kathy Gura, the Omegaven team at Children's Hospital Boston
- Clarivet Torres, for intestinal rehabilitation at Washington D.C. Children's National Medical Center
- Samuel Kocoshis and the well-coordinated team of dieticians and nurses at Cincinnati Children's.
- Debra Sudan, the STEP surgeon at the University of Nebraska Medical Center (she also works with short gut kids who are not candidates for STEP) -- however, some concerns have been expressed about the rehabilitation team since Dr. Torres left Omaha for D.C. and has not been replaced.
- See also major transplant centers.
Individual Experiences
- We have been happy with MaxMunakata's care under Dr. Jason Soden (GI), dietician Kristin Brown, nurse Sara Fidanza (GI), Dr. David Partrick (surgeon), and nurse Randi Price (surgery) at Children's Hospital Denver. The team is well-coordinated. Their approach to intestinal rehabilitation seems more slow-but-steady (a la Pittsburgh) and less aggressive (than Omaha or Boston, for example), but this approach seems to be working well for Max. He has transitioned from 90% of his calories from TPN down to 55%. Dr. Soden also helped us get to Boston for Omegaven when his more senior colleagues were unsupportive, for which we are very grateful. And of course we are grateful beyond words to Mark Puder and Kathy Gura for saving Max's liver and his life.
