Family Life

Frequently Asked Questions

posted: 01/17/11
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Little People Big World. See more pictures of the Roloff family.
Justin Stephens/DCL

Reprinted with permission from LPA Online

Q: What is the definition of dwarfism?

A: Little People of America (LPA) defines dwarfism as a medical or genetic condition that usually results in an adult height of 4'10" or shorter, among both men and women, although in some cases a person with a dwarfing condition may be slightly taller than that.

Q: What are the most common types of dwarfism?

A: By far the most frequently diagnosed cause of short stature is achondroplasia, a genetic condition that results in disproportionately short arms and legs. (The term "disproportionate" is meant only as a point of comparison with people who do not have achondroplasia or any other type of skeletal dysplasia. The arms and legs of a person with achondroplasia are perfectly appropriate for someone with that genetic condition.) The average height of adults with achondroplasia is 4'0". Other genetic conditions that result in short stature include spondyloepiphyseal dysplasia congenita (SED), diastrophic dysplasia, pseudoachondroplasia, hypochondroplasia, and osteogenesis imperfecta (OI). As one might expect from their names, pseudoachondroplasia and hypochondroplasia are conditions that are frequently confused with achondroplasia; diastropic dysplasia occasionally is, too. OI is characterized by fragile bones that fracture easily.

According to information compiled by the Greenberg Center at Johns Hopkins Medical Center and by the late Lee Kitchens, a past president of LPA, the frequency of occurrence of the most common types of dwarfism is as follows:

Achondroplasia (one per 26,000 to 40,000 births) SED (one per 95,000 births) Diastrophic dysplasia (one per 110,000 births)

These conditions are essentially untreatable, although some people with achondroplasia and hypochondroplasia have undergone painful (and controversial) limb-lengthening surgery. LPA's position on limb-lengthening is that it is unnecessary surgery with unknown long-term results, and that it is far more useful to build a dwarf child's self-esteem. (More information below.)

Proportionate dwarfism - that is, a short-stature condition that results in the arms, legs, trunk, and head being the same size in relation to each other as would be expected with an average-size person - is often the result of a hormonal deficiency, and may be treated medically.

Although achondroplasia accounts for perhaps 70 percent of all cases of dwarfism, there are approximately 200 diagnosed types, and some individuals with dwarfism never receive a definitive diagnosis.

Q: What is a midget?

A: In some circles, a midget is the term used for a proportionate dwarf. However, the term has fallen into disfavor and is considered offensive by most people of short stature. The term dates back to 1865, the height of the "freak show" era, and was generally applied only to short-statured persons who were displayed for public amusement, which is why it is considered so unacceptable today.

Such terms as dwarf, little person, LP, and person of short stature are all acceptable, but most people would rather be referred to by their name than by a label.

Q: What is the medical prognosis of a person with short stature?

A: It varies from condition to condition, and with the severity of that condition in each individual. However, it's safe to say that the overwhelming majority of LPs enjoy normal intelligence, normal life spans, and reasonably good health.

Orthopedic complications are not unusual in people with disproportionate dwarfism such as achondroplasia and diastrophic dysplasia, and sometimes surgery is required. A common problem, especially in adults, is spinal stenosis -- a condition in which the opening in the spinal column is too small to accommodate the spinal cord. People with this condition suffer from numbness and/or pain. It can be treated with a type of surgery called a laminectomy.

Q: Is dwarfism considered a disability?

A: Opinions vary within the dwarf community. Certainly a number of short-statured people could be considered disabled as a result of conditions, mainly orthopedic, related to their type of dwarfism. In addition, access issues and problems exist even for healthy LPs. Consider, for example, the simple fact that most achondroplastic adults cannot reach an automated teller machine. Dwarfism is a recognized condition under the Americans with Disabilities Act. Information on the ADA is also available directly from the US Department of Justice, which administers the law.

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Q: Are dwarfs able to participate in athletic activities?

A: Yes, within the limits of their individual medical diagnoses. For instance, swimming and bicycling are often recommended for people with skeletal dysplasias, since those activities do not put any pressure on the spine. Long-distance running or even extensive walking can be harmful because of the constant pounding, although, as a rule, healthy dwarf children without any unusual orthopedic problems should be allowed to engage in normal running-around.

Q: I've heard that car airbags can be dangerous to people of short stature. Should I have the airbag in my car disconnected?

A: You certainly may want to consider taking such a step. You can find out more at the National Highway Transportation Safety Administration's airbag-information site.

Q: Do LPs find their portrayal in movies such as Snow White and the Seven Dwarfs offensive?

A: No doubt some do. Many dwarfs, however, are proud of the role of dwarfs in history and in legend, going back as far as the art of ancient Egypt and Greece. What's important is that the average-size majority recognizes that LPs are fully capable people entitled to respect and equality.

Q: Can average-size people become the parents of dwarf children?

A: Yes. In fact, that's by far the most common situation. LPA is deeply concerned that as it becomes increasingly common to diagnose genetic conditions in utero, including dwarfism, prospective parents will find it difficult to obtain the data they need to make an informed decision as to whether to continue with the pregnancy. Genetic testing carries with it frightening implications for a whole range of issues, including a person's right to obtain medical and other forms of insurance. LPA believes strongly that prospective parents who become familiar with the full, productive lives led by little people will not likely choose termination.

Q: Can short-statured couples become the parents of average-size children?

A: Yes. The odds vary with diagnosis, but a person with achondroplasia has one dwarfism gene and one "average-size" gene. If both parents have achondroplasia, there is a 25 percent chance their child will inherit the non-dwarfism gene from each parent and thus be average-size. There's a 50 percent chance the child will inherit one dwarfism gene and one non-dwarfism gene and thus have achondroplasia, just like her or his parents. And there is a 25 percent chance the child will inherit both dwarfism genes, a condition known a double-dominant syndrome, and which invariably ends in death at birth or shortly thereafter.

Q: Has the gene for achondroplasia been discovered?

The gene for achondroplasia was located and identified for the first time in 1994 by a team of scientists at the University of California in Irvine. The lead scientist, the late John Wasmuth, urged that in-utero screening for achondroplasia be prohibited except to detect double-dominant syndrome among achondroplastic couples.

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Q: We're the parents of a newborn child who's been diagnosed with achondroplasia, and our pediatrician doesn't know anything about it. What should we do?

A: Make sure she sees "Health Supervision for Children with Achondroplasia," an article by the Committee on Genetics of the American Academy of Pediatrics, which appeared in the March 1995 issue of the journal Pediatrics. It is an excellent overview to the issues involved in treating a child with achondroplasia.

Q: We've heard that very young achondroplastic children can run into a variety of complications. What should we be looking for?

A: Essentially there are three complications that are sometimes found in achondroplastic infants and toddlers. In all likelihood your child will not run into any of these problems, but she or he should be evaluated for them nevertheless.

Compression of the brain stem resulting from the top of the spinal column, known as the foramen magnum, being too small to accommodate the spinal cord. Symptoms include central apnea (a condition that causes a person to stop breathing frequently while sleeping) and a general failure to thrive. This condition is treated through surgery, and children who have undergone this operation tend to do very well.

Hydrocephalus, the technical term for excess fluid on the brain, resulting from the drainage openings in the skull being of insufficient size. All people with achondroplasia have some hydrocephalus, and no harm generally results. In addition, all people with achondroplasia have slightly enlarged heads, which can sometimes create the appearance of a problem where there is none. Nevertheless, occasionally hydrocephalus can present a problem, in which case a shunt may be surgically implanted to drain excess fluid.

Obstructive apnea resulting from an infant's or very young child's airways being too small or improperly shaped. The child stops breathing and wakes up frequently during the night (unfortunately, as is generally the case with apnea, these moments of wakefulness are fleeting and often go undetected by parents), sweats, snores, and fails to thrive. Depending on the severity, a physician may recommend waiting until the child outgrows the problem; monitoring the child's oxygen levels and trying treatments such as supplemental oxygen and/or CPAP (or BPAP), a treatment device that provides pressure to the lungs; or, in rare instances, performing a tracheostomy to circumvent the tiny upper airways until those airways have a chance to grow.

Q: My dwarf child will soon undergo surgery. What special considerations regarding anesthesia should be taken into account?

A: In general, the anesthesiologist needs to be careful not to hyperextend your child's neck as much as she or he might with a non-dwarf child. Also, dosage should be regulated by your child's weight rather than age.

Q: We don't want our child to be treated differently from other children. We've heard about a miraculous operation to lengthen an achondroplastic dwarf's legs and arms. Should we consider this?

A: As a general statement of philosophy, most members of the dwarf community believe that no child should undergo surgery unless it is for a treatable medical condition that will improve her or his health. Limb-lengthening surgery, by contrast, does not address any medical condition, although certainly there are dwarfs who have undergone the procedure and are quite happy with the results.

Q: Is it possible to adopt children with dwarfism?

A: Yes. Children are available both in the United States and abroad. There are no shortcuts, however. Adopting a dwarf child is every bit as challenging and arduous a process as adopting an average-stature child.

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