Our Beginning

Allison Claire was born May 2nd, 2012, via c-section, because she was breech. 8lbs 3oz, 20" long.  She was born with a congenital leg defect in her left leg called Fibular Hemimelia..  Fibular Hemimelia is the congenital absence of the fibula and it is the most common congenital absence of long bone of the extremities.  We did not know about her condition before she was born.  Her condition was not noted on any ultrasounds we had. Hind sight being what it is… I’m kind of glad we didn’t know before she was born.  To sit and worry would have driven me crazy.  (the week from when she was born to when we met with her orthopedic DR was crazy enough)

 The dimple in her left shin is a very common trademark of Fibular Hemimelia (FH).

 

 She also had 4 toes on her left foot. You almost didn't notice her missing a toe until you actually counted her toes.

 

Her Pediatrician referred us to Shriner's Hopsital for Children.   They specialize in pediatric orthopedic treatments.  We are so fortunate to live so close to a Shriner’s hospital(about 17miles)  Her first appt at Shriners was when she was just a week old.  At that appt her Orthopedic Dr (Dr. R)told us right away it was Fibular Hemimelia.  I immediately asked is she could write that down, as I never thought I would remember it.  Now I can say it and spell it just like it was her name.  At that first appt Dr. R told us there are options and as she grew and we could see the severity of her malformation, that we would evaluate it in a few months and go from there. There was nothing to do at this time- just enjoy her being a baby and to come back when she is 3mo old for x-rays.   

The options she told us about were Limb lengthening or amputation.  Dr. R mainly wanted us to know that amputation was an  option- as she knew we were going to go home and Google it and we were going see that word.  I did go home that night and I did Google.  Right away I found a couple of blogs  by mothers with young children that were born with FH and a Face book support group for FH, one for FH and amputation and one for FH and Limb lengthening.   Over the next 3 months I read all I could and I my husband and I had resigned her to multiple limb lengthening surgeries.  As amputation was a bad word in our house.

During these first few month we found out that this is the same condition as the 2012 Olympic Runner from South Africa OscarPistorius.  It was very inspiring to watch him run at the 2012 Summer Olympics knowing he didn't let his disabilities stop him. I also saw this story about a college Cheerleader with a 'zebra leg'. There were other stories on ESPN's Sportscenter that showed us there will be no limits to what she can do.  Soccer or Softball. I also realized there were movies that were inspiring:  Finding Nemo and Dolphin Tale.   It made it easier to accept that this was going to be our new 'normal'.