There's been a lot of discussion over the years about the
proper way to refer to a child with dwarfism. Many people who have
the condition prefer the term "little person" or
"person of short stature." For some, "dwarf" is
acceptable. For most, "midget" definitely is not. But
here's an idea everyone can agree on: Why not simply call a
person with dwarfism by his or her name?
Being of short stature is only one of the characteristics that
make a little person who he or she is. If you're the parent or
loved one of a little person, you know this to be true. But here
are some facts that other people may not realize about dwarfism and
those who have it.
- is a condition characterized by short stature. Technically,
that means an adult height of 4 feet 10 inches or under,
according to the advocacy group Little People of America
- can be caused by any one of more than 200 conditions, most of
which are genetic. The most common type, accounting for 70% of
all cases of short stature, is called achondroplasia.
- can and most often does occur in families where both parents
are of average height. In fact, 85% of children with
achondroplasia are born to average-size parents.
- an intellectual disability. A person who has dwarfism is
typically of normal intelligence.
- a disease that requires a "cure." Most people with
the condition can live long, fulfilling lives.
- a reason to assume someone is incapable. Little people go to
school, go to work, marry, and raise children, just like their
What Causes Short Stature?
More than 200 conditions are known to cause short stature in a
child. Most are caused by a spontaneous genetic mutation in the egg
or sperm cells prior to conception. Other conditions are caused by
genes inherited from one or both parents. In either of these cases,
two average-size parents can have a child with short stature
(though this is far more likely to occur with a spontaneous
mutation). Similarly, depending on the type of condition causing
the short stature, it is possible for little people to have an
What prompts a gene to mutate is not yet clearly understood. The
change is seemingly random and unpreventable, and can occur in any
pregnancy. Generally, when average-size parents have a child with
short stature due to a spontaneous mutation, it is rare to have a
second child who is also of short stature. However, if parents have
some form of dwarfism themselves, the odds are much greater that
their children will have it as well. A genetic counselor can help
determine the likelihood of passing on the condition in these
Dwarfism has other causes, including metabolic or hormonal
disorders in infancy or childhood. Chromosomal abnormalities,
pituitary gland disorders (which influence growth and metabolism),
absorptive problems (when the body can't absorb nutrients
adequately), and kidney disease can all lead to short stature if a
child fails to grow at a normal rate.
Types of Short Stature
Most types of dwarfism are known as skeletal dysplasias, which
are conditions of abnormal bone growth. They're divided into
two types: short-trunk and short-limb dysplasias. People with
short-trunk dysplasia have a shortened trunk with longer limbs,
whereas those with short-limb dysplasia have an average-sized trunk
but small arms and legs.
By far, the most common skeletal dysplasia is achondroplasia, a
short-limb dysplasia that occurs in about 1 of every 26,000 to
40,000 babies of all races and ethnicities. It can be caused by a
spontaneous mutation in one gene or a child can inherit the gene
from a parent who has achondroplasia. People with achondroplasia
have a relatively long trunk and shortened upper parts of their
arms and legs. They may share other features as well, such as a
large head with a prominent forehead, a flattened bridge of the
nose, shortened hands and fingers, and reduced muscle tone. The
average adult height for someone with achondroplasia is about 4
Diastrophic dysplasia is another, less common form of short-limb
dwarfism. It occurs in about 1 in 100,000 births, and is also
sometimes characterized by cleft palate, clubfeet, and ears with a
cauliflower appearance. People who have it tend to have shortened
forearms and calves (this is known as mesomelic shortening).
Spondyloepiphyseal dysplasias (SED) refers to a group of
short-trunk skeletal conditions that affect about 1 in 95,000
babies. Along with achondroplasia and diastrophic dysplasia, it is
one of the most common forms of dwarfism. In some forms, a lack of
growth in the trunk area may not become apparent until the child is
between 5 and 10 years old; other forms are apparent at birth.
Often, kids with this disorder also have clubfeet, cleft palate,
and a barrel-chested appearance.
In general, dwarfism caused by skeletal dysplasias results in
what is known as disproportionate short stature - meaning the limbs
are short in comparison with the rest of the body. Metabolic or
hormonal disorders typically cause proportionate dwarfism, meaning
a person's arms, legs, and trunk are all shortened but remain
in proportion to overall body size.
Some types of dwarfism can be identified through prenatal
testing if a doctor suspects a particular condition and tests for
it. But most cases are not identified until after the child is
born. In those instances, the doctor makes a diagnosis based on the
child's appearance, failure to grow, and X-rays of the bones.
Depending on the type of dwarfism the child has, diagnosis often
can be made almost immediately after birth.
Once a diagnosis is made, there is no "treatment" for
most of the conditions that lead to short stature. Hormonal or
metabolic problems may be treated with hormone injections or
special diets to spark a child's growth, but skeletal
dysplasias cannot be "cured." People with these types of
dwarfism can, however, get medical care for some of the health
complications that are associated with short stature. Problems
associated with the different forms of dwarfism involve other body
systems - such as vision or hearing - and require careful
Possible Complications and Treatments
Short stature is the one quality all people with dwarfism have
in common. After that, each of the many conditions that cause
dwarfism has its own set of characteristics and possible
complications. Fortunately, many of these complications are
treatable, so that people of short stature can lead healthy, active
For example, some babies with achondroplasia may experience
hydrocephalus (excess fluid around the brain). They may also have a
greater risk of developing apnea - a temporary stop in breathing
during sleep - because of abnormally small or misshapen airways or,
more likely, because of airway obstruction by the adenoids or the
tonsils. Occasionally, a part of the brain or spinal cord is
compressed. With close monitoring by doctors, however, these
potentially serious problems can be detected early and surgically
As a child with dwarfism grows, other issues may also become
- delayed development of some motor skills, such as sitting up
- a greater susceptibility to ear infections and hearing
- breathing problems caused by small chests
- weight problems
- curvature of the spine (scoliosis)
- bowed legs
- trouble with joint flexibility and early arthritis
- lower back pain or leg numbness
- crowding of teeth in the jaw
Proper medical care can alleviate many of these problems. For
example, surgery can often bring relief from the pain of joints
that wear out under the stress of bearing weight differently with
limited flexibility. Surgery also can be used to improve some of
the leg, hip, and spine problems people with short stature
Nonsurgical options may help, too - for instance, excessive
weight can worsen many orthopedic problems, so a nutritionist might
help develop a healthy plan for shedding extra pounds. And doctors
or physical therapists can recommend ways to increase physical
activity without putting extra stress on the bones and joints.
Helping Your Child
Although types of dwarfism, and their severity and
complications, vary from person to person, in general a child's
life span is not affected by the dwarfism. Though the Americans
with Disabilities Act protects the rights of people with dwarfism,
many members of the short-statured community don't feel that
they have a disability.
You can help your child with dwarfism lead the best life
possible by building his or her sense of independence and
self-esteem right from the start. Here are some tips to keep in
- Treat your child according to his or her age, not size. If
you expect a 6-year-old to clean up his or her room, don't
make an exception simply because your child is small.
- Adapt to your child's limitations. Something as
simple as a light switch extender can give a short-statured child
a sense of independence around the house.
- Present your child's condition - both to your child and
to others - as a difference rather than a hindrance. Your
attitude and expectations can have a significant influence on
your child's self-esteem.
- Learn to deal with people's reactions, whether it's
simple curiosity or outright ignorance, without anger. Address
questions or comments as directly as possible, then take a moment
to point out something special about your child. If your child is
with you, this approach shows that you notice all the other
qualities that make him or her unique. It will also help prepare
your child for dealing with these situations when you're not
- If your child is teased at school, don't overlook it.
Talk to teachers and administrators to make sure your child is
getting the support he or she needs.
- Encourage your child to find a hobby or activity to enjoy. If
sports aren't going to be your child's forte, then maybe
music, art, computers, writing, or photography will be.
- Finally, get involved with support associations like the
Little People of America. Getting to know other people with
dwarfism - both as peers and mentors - can show your child just
how much he or she can achieve.
Linda Nicholson, MS, MC
Date reviewed: June 2008
Note: All information is for educational purposes only. For specific medical advice,
diagnoses, and treatment, consult your doctor.
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