Sunday, September 6, 2015

Fibular Hemimelia: a pictorial of eleven years

I wanted to compile a chronicle of pictures of Ethan's journey thus far.  Sometimes it's helpful when thinking of the future to realize how far we have come!

I wish I had taken many more baby pictures of his feet and legs!  When Ethan was born, his nine toes surprised us, but doctors did not provide a diagnosis of fibular hemimelia until Ethan was 9 months old -after I noticed his leg length discrepancy by three or four months of age -obvious in the picture above! (2004)

By five-years-old, his discrepancy was about 5-6 centimeters, and we had made our way to Baltimore and Dr. Standard.  He experienced no problems or limitations -aside from an occasional knee pain or two (probably caused by the valgus in his knee).

Ethan's first surgery was performed four months before his 7th birthday--this involved the placement of an external fixator on the tibia/fibula and an 8-plate insertion.  The first six weeks were rough -as he lost the ability to bend his knee without excruciating pain.  After much therapy, however, he began to make great gains.  His leg was quite cooperative, and aside from a few pin site infections, things progressed rather smoothly.  We stayed in Baltimore for 10 weeks post surgery -in order to be near Dr. Standard and the physical therapy department. Ethan had land and pool therapy three times a week and x-rays every two weeks! We were able to watch his leg grow 6 centimeters as new bone developed (2011)


Six months later, the fixator was removed -and replaced with a thigh-high cast.

Though a bit cumbersome, wearing a cast for eight weeks was a sigh of relief in comparison to the ex-fix!


After a couple of months, the first cast was replaced with a removable one, and after almost 9 months, his leg was free!  Ethan began therapy to strengthen his leg and to learn to walk with a normal gait.  As the picture above shows, the valgus in his knee was still an issue after removal, and his scarring was quite prominent. (2012)

 A year after fixator surgery, Ethan had another surgery to move the 8-plate in his femur to his tibia -to continue working on the valgus in his knee -and ultimately straighten his leg.  Dr. Standard also attempted to release his scars in order to correct the deeper scars that wanted to adhere to the bone (pins from the ex-fix had pushed the skin to the bone). Ultimately, some scars simple were corrected while others returned to the previous "sunken" state. Recovery was surprisingly quick with minimal pain. (2012)

The pictures above show the difference that 8-plates can make in the overall "straightness" of the legs!  However, fibular hemimelia legs are apt to slide back into a valgus position -and that's what Ethan's legs did -requiring another 8-plate transfer -this time from the tibia back to the femur.

This is a pic of the 8-plate that has been so necessary, and yet so troublesome!


Ethan's second 8-plate surgery was successful, and Dr. Standard again performed a scar release, this time more extensively -so that the scars were reopened and stitched.  This was his roughest recovery -being in quite a bit of pain following the surgery. His pain subsided within a few hours, though, and he was excited to finally have crutches, having graduated from the walker! The recovery period involved soreness and about ten days of limited activity (2014)

Less than a year later, Ethan's femur slipped back into a valgus position, so another 8-plate surgery was required.  Dr. Standard also decided to address his ankle! As the pic below illustrates, his ankle turns in -as it is also in a valgus position.  Therefore, an 8-plate of sorts was inserted in the ankle as well- projected to take a couple of years to correct.


 This was the first surgery in which Ethan experience any anxiety.  He had to be given an IV prior to being moved to the O.R., and he had more questions than usual.  Being ten-years-old, he had a greater understanding of what he faced.  Despite his reservations, recovery was, again, rather quick -aided by the fact that we were snowed in for a few weeks during this one! (2015)

In October of 2015, Ethan had a 6th surgery to have both 8-plates removed -one from the femur and one from the tibia.  Recovery was rather smooth -and he enjoyed spending his P.E. time talking to on of his favorite teachers Mr. Trent! (2015)

While you're here with me, can I just say that God has a plan for my son -that his diagnosis of fibular hemimelia -though labeled a "defect" by the world -is simply part of God's plan for his life.  Psalm 84:11 reassures us that God will not withhold any good thing from those who walk uprightly.  God has not chosen to withhold good things from Ethan; he promises, instead, to work all things -including this, to his good!