Fibular Hemimelia -Decisions

In the next few months, Freddie, Ethan, and I will have to prayerfully make a decision regarding Ethan’s future surgeries. The weight of this decision feels physical, pressing on my heart and mind, bringing tears to my eyes even as I type.  His left femur is projected to be 2 ¼ inches shorter than his right at the end of growth (it’s over an inch shorter now), and we have two options:  1) to lengthen the femur internally -which involves a major surgery, therapy, and about six months of his life, but is a much easier procedure and less risky than the external lengthening he has already endured - or 2) to slow the growth in the right leg -which involves a minor surgery on his otherwise healthy leg, resulting in the loss of a bit over two inches of height.  

Such a strange decision to be placed in our hands:  how tall will your son be.  

God mercifully chooses our babies’ eye colors, the outline of their precious faces, the color and number of hairs on their heads. So I see this decision as a heavy one.  Ethan’s wise, we know that, and practical, and his voice will be heard. But can you imagine even making this choice for yourself? Would you endure another surgery? Would you permanently alter your stature?

I’ve preached to young girls many times -and daily to myself -that God created your body, formed it perfectly. Whether it be full hips or boyish figures, we’re fearfully made.  And Ethan is, too- masterfully knitted by the hands of God.  And God has walked this before us, I know, and will answer our prayers for peace.

And when I think of all of the decisions we make each day -and their implications - I know that this one, though weighty, is not life. And simply pales in comparison to the decision we saw those young students make this week - the decision to stand in the face of fear and boldly choose Christ.

Each day, though, whether we acknowledge the fact or not, we make the same choice -we either choose Christ or we don’t.  Second Peter tells us that the Christian walk should be a diligent one - a continual choosing of holiness over unrighteousness, a pressing on toward godliness, an adding of attributes: faith, virtue, knowledge of God.  Be sure of your calling, he warns -because those who are assured look and live differently than those who are not -not because of our innate goodness, but because of the God who indwells us -who compels us -toward Himself -who promises to finish the work that He’s started -who promises to keep us from falling and to present us faultless before His glory!

He alone is WORTHY of our PRAISE!

And He Alone will help us decide what’s best, I know.  

But He also calls us to pray together -to stand together -especially here in these last days (or so they seem to be) -to finish together. So, pray for us and our decision -as your examine your decisions each day.  Let’s compel each other, each day, to choose Jesus -and to be so BOLD in our choosing that a lost and dying world might yearn for the Christ in us! Let us live each day radically choosing Jesus, so that if our death comes in martyrdom, it will be a fitting end to a life lived daily proclaiming His name, choosing Him over hatefulness, over worldliness, over selfishness, over bitterness - over all sin.

Fibular Hemimelia: a pictorial of Sixteen 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.  This was after I noticed his leg length discrepancy when he was three or four months of age -obvious in the pictures below! (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 his valgus (knock-knees).


 

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, Ethan had his second surgery - to remove the fixator and replace it with a thigh-high cast. (2011)



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 his third 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 simply 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 (fourth surgery in total) was successful, and Dr. Standard again performed a scar release, this time more extensively -so that the scars were reopened and stitched.  This was a rough 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 (fifth surgery in total) 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 experienced 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 sixth 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 one of his favorite teachers, Mr. Trent! (2015)

By March of 2017, Ethan's leg had, yet again, slipped into a valgus position, and this time, he was experiencing a lot of ankle pain.  Dr. Standard decided to perform an 8-plate insertion at both the femur and tibia, but to also address the ankle.  He cut part of Ethan's tibia that was impinging on his ankle in order to improve his flexion and hopefully help with the pain.  Because this procedure was more invasive, it required an overnight stay in the hospital.  Following the procedure, Ethan's leg was wrapped tightly, almost cast-like, and we returned to Baltimore in April to have the wrappings removed and replaced with a boot.  This seventh surgery proved to be quite painful for Ethan; the ankle procedure especially gave him a great deal of discomfort. (2017)

In April of 2018, both 8-plates were ready to be removed.  This was a simple, eighth surgery and recovery, and Dr. Standard declared Ethan holds the record for 8-plates! (2018).

In November of 2019, Ethan had his 9th surgery! This was a very difficult one, as Dr. Standard inserted a Precise Nail in the femur in order to lengthen Ethan’s leg 6 centimeters. This process involved the use of a magnet that, when placed on the leg, turned the rod inside and lengthened the bone. We stayed in Baltimore for 3 weeks this time in order for Ethan to receive physical therapy and to go to clinic appointments every two weeks. Once we returned home, we had to make the trip to Baltimore every two weeks for 3 months! Ethan continued physical therapy until May.  

Ethan’s 10th surgery was the result of an accident. Unfortunately in May of 2020, just a couple of weeks after finishing physical therapy, Ethan fell off a scooter and broke his hip! Because of the rod in his femur and the tightening/pressure on his hip from the lengthening procedure, the hip was more susceptible to breaking. Ethan describes this experience as his most painful to date. Dr. Standard inserted screws in Ethan’s hip, and he was in a hip brace for about 2 months. He returned to physical therapy once again to strengthen his hip and work on his gait. This all happened during a global pandemic! Only one parent was allowed in the hospital!

Ethan’s 11th surgery will be in June of 2021. This will be performed in order to remove the lengthening rod and the hip screws.

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!