As you may (or may not) be aware, Namine was diagnosed with a rare disorder called femoral facial syndrome. This diagnosis is an attempt by her doctors to explain the multiple conditions she was born with: double-inlet left ventricle heart defect, caudal regression syndrome/sacral agenesis, and Pierre Robin sequence. Those are already a mouthful, and caudal regression syndrome brought with it additional side effects: scoliosis and clubfoot.
June 3rd is designated World Clubfoot Day in memory of the birthday of Dr. Ponseti, who developed the Ponseti Method as a non-surgical way to treat the deformity. The severity of Namine’s clubfoot, however, required surgical intervention. She actually had clubfoot repair surgery twice — once by her original orthopedic surgeon, whose name I will not utter here, and again by a different pair of doctors. One, Dr. Brian Black, became her regular orthopedic doctor and bone specialist; he also advised us on Namine’s scoliosis. The other, Dr. John LoGiudice, is a very capable plastic surgeon who grafted the burst vein in Namine’s left foot, thereby saving it.
Clubfoot is a diagnosis that, while the name remains the same, can differ wildly from patient to patient. Namine has had the misfortune to have required invasive surgery in order to correct, but not everyone does. Nevertheless, we are thankful for the capable staff responsible for giving Namine the care she needed. (And we bite our thumbs at the doctor responsible — not that he’d ever admit that — for her near loss of limb.)