We have learned a lot about Fibular Hemimelia over the past 8 months, and I continue to learn new things every day from the Facebook support groups I’m a part of. FH is a very broad term and has quite the spectrum from minimal to severe.
From what I’ve learned, the basic foundation of Fibular Hemimelia is the complete absence or under-development of the fibula bone. Sometimes a child may be born with a fibula but it is short or thin. In Maely’s case, she has no fibula at all. Because the fibula is absent or under-developed, the ankle structure and foot don’t develop properly in most cases. Sometimes a child is born with a normal-appearing foot and sometimes they are malformed. It is common to have less than 5 toes. In Maely’s case, her right foot is malformed and she has two sweet little toes. Her left leg appears to be unaffected but she has 4 toes on her left foot. It’s seriously the cutest thing I’ve ever seen and I know it will be her little party trick when she’s older (two truths and a lie, anyone?). Most FH kids also have a shortened tibia. Sometimes it is very minimal and no treatment is required and sometimes there is enough difference in length (like with Mae’s tibia) that it requires anything from a shoe lift to lengthening surgeries, to amputation and prosthetics.
Fibular Hemimelia is seen in about 1 in 40,000 births. It is twice as common in boys. It is not genetic and is a complete anomaly in most cases. Any future children we have or Maely has will have the same likelihood (1 in 40,000) of being born with FH.
In our eyes, FH is not a disability. Matt loves to say “the only disability in life is a bad attitude.” If you’ve had the chance to meet our sweet girl, then it is pretty evident that she is perfectly healthy and perfectly beautiful. God just created her a little differently than most and we fully trust in His plans.
Before I formed you in the womb I knew you, before you were born I set you apart.
Megan lives in Chicago with her little family of three. She loves Jesus, interior design, anything gold, and Pinot Noir.
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