When Nicholas was diagnosed with FH we had to make a life altering choice for him. To have his leg amputated or to have it lengthened and reconstructed. It was very hard to find information on limb lengthening. I created this blog in order to give hope and information to new parents. It has also become an outlet for me to share my experience as a mom. Writing has helped me in ways I can’t express.
When Nicholas was born I wondered if he would be able to walk and what limitations fibular hemimelia would create for him. So far he has no limitations (when not in a fixator or healing from surgery and thankfully most of his life is fixator free!).
I cant say it is all easy for Nicholas and in my heart I do wish he did not have to go though any of it, but watching him grow and thrive has been the joy of my life. We did not make a choice that we could live with. We made a choice that we could celebrate. Every day I am proud of him for his amazing strength, compassion and zest for life. Every day I am grateful to Dr. Standard, the ICLL staff and our friends and family for making it all possible! It takes a village to lengthen and reconstruct a leg! Another important part of my village is the Fibular Hemimelia and Limb Lengthening Awareness group I created on Facebook. It has been an amazing support for me and many others. Check it out.
On more than one occasion I have been asked how many surgeries Nick has had and what they were. Here is a rough list. I will update it and add more detail another time.
1.Lengthening and reconstruction 18 months old
2. Removal of fixator (outpatient)
3. Lengthening and reconstruction age 5
4. Removal of foot/ankle portion of fixator (outpatient)
5. Removal of the rest of the fixator (outpatient)
6. Eight plate insertion age (out patient)
7. Super knee age 7 (and 8 plate removal) inpatient 1 night
8. Lengthening and reconstruction age 8
9. Removal of foot ankle part of exfix and removal and replacement of a half pin that was bothering him. One
night in hospital.
10. Removal of rest of ex fix and rod inserted. One night in hospital.
11. Arm reset and plate put in leg for malunion.
12. Eight plate insertion for dynamic valgus, plate removed from tibia, adhesions addressed.
13. Eight plate removed. (outpatient)
14. Internal Femur Lengthening with PRECICE.
15. Arthrodesis of foot etc., precice rod removal, additional 8 plate added, ligaments reconstructed and stapling of growth plates in left leg.