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So Many Questions

Our baby girl, Nicholette, was born in 2003. She is diagnosed with Fibular Hemimelia. We are seeing Dr. Widman in NYC who said that the solution will be a leg lengthening. We do not have a lot of information about this topic. If you have any insight or if you have any experience in this matter please contact us. As of right now she is predicted to have about a 10cm discrepancy. They are saying one operation definitely but maybe 2. Nicholette’s ankle needs support so we are always looking for high-top shoes to give her more support. She has not been put in a brace at this time. The docs still want to wait for that. The foot that has no ankle does turn outward as she walks. We are wondering if there are people out there who are going through this. If there are, we would love to hear from you. You can email us and we can even talk on the phone.


I looked into the possibility of lengthening for my daughter. I had phone conversations with Dr.Paley in Maryland, and sent him my daughters chart (we live in Texas and couldn't afford to make the trip if he didn't feel she was a canidate for lengthening.) I was told that lengthening was more risky for my daughter because she has such a drastic difference. It would take numerous surgeries over the course of many years, and then the bone might break easier. I am not saying that this will be the case with you, but make sure you ask. Even from the postings I read on here, saying 2 surgeries for lengthening sounds low.