Children who have fibular hemimelia are born with a short or missing fibula
(one of the two bones in the lower leg). Other bones in the leg, ankle, and foot can
be affected too.
Most children with fibular hemimelia (FIB-you-luhr heh-me-MEE-lyuh) have it in
one leg, but some have it in both. Experts who treat bone problems have several options
to help kids with a hemimelia.
What Are the Signs and Symptoms of Fibular Hemimelia?
Here are some of the things that parents might see when a baby is born with hemimelia:
When all or some of the bone is missing in one leg, the leg is shorter than the
other. Doctors call this a leg
length discrepancy.
Because shinbone is missing, the ankle joint may not form properly. The ankle
and foot might look different from normal.
The child's knee and lower leg might bend inward.
The child's lower leg may bow out.
The foot may have fewer than five toes.
A baby with hemimelia can have problems that parents won't see. Doctors can find
these through physical exams and tests:
The hip joint may be more shallow than usual.
Some of the ligaments (strong, flexible bands of tissue) that hold the knee together
may be weak or missing.
What Causes Fibular Hemimelia?
Scientists and doctors don't know exactly why babies are born with fibular hemimelia.
But they do know that nothing a mom does during pregnancy causes the problem. Parents
can't stop it from happening, but they can help kids get the best care.
How Is Fibular Hemimelia Diagnosed?
Often, doctors know that a fibula is short or missing before a baby is born. That's
because prenatal (before birth) ultrasound
scans show the baby's bones as they form and grow.
If a mom didn't get a scan while pregnant, doctors will see the fibular hemimelia
when the baby is born. They may order these tests to learn more:
X-rays will
show what the bones and joints look like.
MRIs will let doctors see ligaments and other soft tissue in the foot and joints.
How Is Fibular Hemimelia Treated?
Treatment depends on how an individual child is affected. Some children with fibular
hemimelia have very mild limb length difference and need very little treatment. Others
have a large limb length difference and unstable joints.
When a child has fibular hemimelia, the leg may not grow as fast or as long as
it should. Kids might have trouble standing or walking. Getting the right treatment
is important.
Different experts work as a team to treat fibular hemimelia. The team is led by
specialists (doctors and other providers who treat bone and muscle problems).
They work with other specialists as needed. Your child's team also might include physical
therapists and an
.
The care team will come up with a plan to help your child stand, walk, and play
like other kids. The plan will be based on:
how much bone is missing
how much difference there is in the length of the legs
how the problem might affect your child as he or she grows
whether your child has foot or ankle problems
You might need to bring your child for a series of visits over several months before
the care team decides on a treatment. This gives the team time to understand how your
child will grow and what the difference in leg length might be.
Sometimes, there isn't a lot of difference in leg length. Kids might just wear
a special shoe or shoe insert. But most kids need surgery.
Surgery to Treat Fibular Hemimelia
Doctors do different surgeries depending on a child's situation. Most kids get
surgery to help their legs grow to the same length. Others need surgery to stand and
walk. Some kids only need one surgery. Others have several surgeries during their
growing years.
Epiphysiodesis
When kids have small differences in leg length, the care team might suggest a surgery
called epiphysiodesis (ep-i-fiz-ee-uh-DEE-sis). For this surgery to work, kids must
still be growing.
During the surgery, one or two of the growth plates in the longer leg are scraped
or compressed with surgical plate and screws. A growth plate is an area at the end
of the bone where new growth happens. The surgery slows or stops the longer leg from
growing so the shorter leg can catch up.
Leg-Lengthening Surgery
Kids who get leg-lengthening surgery usually need a few operations over several
years. The surgery can add about 8 inches (20 centimeters) to the shorter leg.
In this surgery, the orthopedic team places a lengthening device on the shorter
leg. The device might be on the outside
of the body or inside
the bone.
Other Surgeries
In addition to fixing leg length differences, some kids need surgery to help them
stand and walk. These surgeries repair bones, muscles, and joints that didn't form
properly because of the hemimelia.
Treatment for Severe Fibular Hemimelia
Sometimes orthopedic experts know that surgery won't help a child to stand or walk
properly. A child might have one leg that is very much shorter than the other or a
foot problem that can't be fixed. For these kids, a
offers the best chance to live an active life.
Doctors might amputate (do surgery to remove) part of the foot or leg so the child
can wear a prosthesis. Orthotists then fit the child with a prosthetic lower leg.
New prosthetics mean kids who have had an amputation can run, climb, and jump like
other kids. Most kids can play sports.
Kids who wear prosthetic legs need to see an orthotist at least once a year. The
orthotist will adjust the prosthesis or make a new one as the child grows.
What Can Parents Do?
Helping children with fibular hemimelia reach their full potential takes many years.
Kids need medical care until they are fully grown. Because of this, doctors want parents
to play a big role in treatment.
Here are things you can do:
Talk to your child's care team about treatment and healing. Ask questions. Find
out what each surgery is for and how to care for your child afterward.
Take your child to all medical appointments. Some surgeries need to be done at
the right time in the child's growth. Missing that time may mean kids can't get the
surgery or it won't work as well.
If your child is old enough, talk about treatments and what to expect. Include
older kids in surgery decisions when you can. Doctors can often schedule a surgery
so it doesn't interfere with an activity your child wants to do.
