Here are some facts that other people may not realize about dwarfism and those
who have it.
is 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 300 conditions, most of which are genetic.
The most common type is called achondroplasia.
can and most often does happen in families where both parents are of average height.
In fact, 4 out of 5 of children with achondroplasia are born to average-size
an intellectual disability. A person who has dwarfism is typically of normal intelligence.
a disease that requires a "cure." Most people with one of these conditions
live long, fulfilling lives.
a reason to assume someone is incapable. Little people go to school, go to work,
drive cars, marry, and raise children, just like their average-size peers.
What Causes Short Stature?
More than 300 well-described conditions are known to cause short stature in a child.
Most are caused by a spontaneous genetic change (mutation) in the egg or sperm cells
prior to conception. Others are caused by genetic changes inherited from one or both
Depending on the type of condition causing the short stature, it is possible for
two average-size parents to have a child with short stature, and is also possible
for parents who are little people to have an average-size child.
What prompts a gene to mutate is not yet clearly understood. The change is seemingly
random and unpreventable, and can happen in any pregnancy. If parents have some form
of dwarfism themselves, the odds are likely that their children will also be little
people. A genetic counselor can help determine the likelihood of passing on the condition
in these cases.
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 dysplasia, which are conditions of
abnormal bone growth. They're divided into two types: short-trunk and short-limb dwarfism.
People with short-trunk dwarfism have a shortened trunk with more average-sized limbs,
whereas those with short-limb dwarfism have an average-sized trunk but shortened arms
By far, the most common skeletal dysplasia is achondroplasia, a short-limb dwarfism
that happens in about 1 of every 15,000 to 40,000 babies born of all races and ethnicities.
It can be caused by a spontaneous mutation in a gene called FGFR3, or a child can
inherit a change in this gene from a parent who also 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 larger 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 a little over 4 feet.
Diastrophic dysplasia is a different form of short-limb dwarfism. It happens in
about 1 in 100,000 births, and is also sometimes associated with cleft palate, clubfeet,
and ears with a cauliflower-like appearance. People who have this diagnosis tend to
have shortened forearms and calves (this is known as mesomelic shortening).
(SED) refers to a group of various short-trunk skeletal conditions. Along with
achondroplasia and diastrophic dysplasia, it is one of the more common types of dwarfism.
In one type of SED, the lack of growth in the trunk area may not become apparent until
the child is school age; other forms are apparent at birth. Kids with this disorder
also might have clubfeet, cleft
palate, and vision and/or hearing issues.
In general, dwarfism caused by skeletal dysplasias results in what is known as
disproportionate short stature — meaning the limbs and the trunk are not of
the same proportion as those of typically-statured people.
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
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 baby's appearance, growth pattern, 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 increase a child's growth, but skeletal dysplasias
cannot be "cured."
People with skeletal dysplasias can, however, get medical care for some of
the health complications associated with their short stature.
Some forms of dwarfism also involve issues in other body systems — such as
vision or hearing — and require careful monitoring.
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 lives.
For example, a small percentage of babies with achondroplasia may have hydrocephalus
(excess fluid around the brain). They may also have a greater risk of developing apnea (a temporary stop in
breathing during sleep). This can be due to abnormally small bone anatomy or 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 corrected.
As a child with dwarfism grows, other issues also may become apparent, including:
development of some motor skills, such as sitting up and walking happening at
older ages than an average-sized child
a greater susceptibility to ear infections and hearing loss
trouble with joint flexibility and early arthritis
lower back pain or leg numbness
crowding of teeth
Not every type of dwarfism has all of these problems associated with it, and proper
medical care can help with many of them. Surgery also can be used to improve some
of the leg, hip, and spine problems people with dwarfism sometimes face.
Nonsurgical options can help, too — for instance, excessive weight can worsen
many orthopedic problems, so a dietitian 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 dwarfism. Although 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 general tips to keep in mind:
Treat your child according to his or her age and developmental level, and not
size. For example, a 2-year-old should not still be using a bottle, even if he or
she is the size of a 1-year-old. And, 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 and a well-placed step stool 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 outwardly 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 and, importantly, that his or her dwarfism doesn't cause you
any anger. It also helps prepare your child for dealing with these situations when
you're not there.
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 thing, then maybe music, art, computers, writing, or photography
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.