Fibular Hemimelia, Tiny Toes, and Cute Pictures

Wikipedia, the on-line, often UNRELIABLE encyclopedia, defines Fibular Hemimelia as: "the congenital absence of the fibula and it is the most common congenital absence of long bone of the extremities." It is the shortening of the fibula at birth, or the complete lack thereof. In humans, the disorder can be noted by ultrasound in utero to prepare for amputation after birth or complex bone lengthening surgery. The amputation usually takes place at 6-months with removal of portions of the legs to retro fit them for prosthetic use. The other treatments which include repeated corrective osteotomies and leg-lengthening surgery are costly and associated with residual deformity."

First things first.  My ultrasounds did not detect fibular hemimelia, nor do a lot of ultrasounds!  I feel blessed that I did not receive such news via ultrasound and, instead, was able to enjoy the miracle of a beating heart and waving fingers.  Had I known the diagnosis while pregnant and consulted on-line sources, I am sure that I would have traded a joyous pregnancy for a pregnancy filled with worry and fear.  That said, if the condition is detected in utero, then you have time to prepare!  New advances are being made each day in the orthopedics fields, and perhaps one day soon an amputation will never be listed as a "treatment"!  Also, take heart --there are a varying degrees of severity with regard to FH.  Ethan, for instance, has a mild form and amputation was never even mentioned at any doctor's appointment. 

When I first started researching the condition, I found no pictures that looked anything like his level of severity; thus, most of the treatments mentioned on-line didn't apply to us at all.  In case someone might need a picture that looks like their child, I am including pictures of Ethan's legs from day one in the hospital.

(Excuse the white, lacy gown --it's my husbands' family's "Coming Home" attire that every baby has worn home, beginning with my husband's big sister and ending with the family's latest addition --little Grady). 

You have to admit --that little foot is sweet!  I was, as I'm sure most moms would be, worried about what everyone would think.  Would children make fun of him, adults gawk --would he be self-conscious?  In all actuality, very few people even noticed.  Some of those who did asked questions, some didn't.  Little kids found his toes to be quite "awesome" -and big brother Josh enjoyed showing them off to his friends.  No one in his six years has made fun of him because of his foot.  Maybe those days are to come, but even so, what a chance to learn lessons about what's really important in life.

  When looking at another child, Ethan (around age 2-3) asked, "Momma, does he have ten toes, or did God make him special like me?"  Isn't that what it's all about -perspective!

The above pictures were taken around age one.



Don't you just want to kiss those little toes!  I was so worried that he would not be able to walk --that the difference would make him wobbly or so out of balance that taking steps would be too much for him to handle.  He certainly proved me wrong; he simply self-adjusted, sort of popping out his right leg to account for the discrepancy in the left --and he never missed a beat!  His first steps were right on target at around eleven to twelve months. 

These must have been around age 2 -- look at those banged up legs!

 We were blessed to discover another little boy who shared our pediatrician who was also diagnosed with FH and had four toes on his left foot!  Finally, a friend for Ethan with whom he could closely identify!  Too bad the family moved cross country shortly after we met.

As you notice in the pictures, his leg lenth discrepancy has remained consistent since about nine months of age.  As of today, he has a 5.2 centimeter difference (about 2 inches).  This picture was taken just a few weeks before Ethan finally got a shoe lift.  This was a particularly telling picture because he seems so out of alignment. 

Because his condition is milder than some, he did not undergo any treatment these last six year, aside from yearly X-rays.  I do believe, however, he would have benefited from a lift earlier -although he has never complained of back or hip pain.  According to our first orthopedist -and seconded by the new orthopedist --long term effects of such a discrepancy would result in back/hip pain, knee deterioration, arthritis, etc.  Children, though, as we all know, are resilient --and his little body simply adapted to the difference.

So, if your baby looks similar to mine, I hope these pictures bring you hope.  He has more than enjoyed being a normal little boy --who just happens to have FH!