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Dwarfism

Special Needs Adoption Adoption Education and Training Medical Dwarfism

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  Written by Juli Windsor, MSPAS, PA-C on 03 Jan 2014

Dwarfism is defined as final adult height of less than 4 foot 10 inches, due to a genetic or syndromic cause.

Institutional care and multiple transitions can have a definite effect on growth and especially height. Almost no one grows well in institutional care. However, when height is so profoundly stunted, compared to the 1000’s of other children we have seen from institutional care or from a region of the world, we need to think about an underlying cause. Typically kids will fit into what are called skeletal dysplasias, which simply means that the bones do not grow normally.

There are >200 forms of skeletal dysplasias, as well as endocrine causes for short stature. Children who are extremely stunted in growth will need workup beyond what is likely to be able to be performed in any country abroad before reaching any definitive diagnosis.

The test for most forms of dwarfism will not show up on basic chromosomes. Though rarely done prior to adoption, there are specialized tests available for direct DNA analysis to identify various genetic causes of dwarfism. However, most forms of dwarfism have no specific testing and these are considered a clinical diagnosis meaning a diagnosis based on physical exam and direct observation of a child in person during an exam. X-rays of the pelvis, spine, and limbs can also aid in making the diagnosis. Children with dwarfism need to be seen by a geneticist to direct the testing and ideally you would seek out a pediatric geneticist who specializes in skeletal dysplasias in your area if you decide to bring a child with dwarfism to join your family.

Some of the more common forms of dwarfism include:

  • Achondroplasia (most common genetic form of dwarfism)1 Short limbs, large head, changes in the midface
  • Spondyloepiphyseal dysplasias (SED)2 Short trunk, bony changes including spine (scoliosis), clefting
  • Diastrophic dysplasia (DD) Short trunk, very short limbs, clubfeet, scoliosis, clefting

The overall prognosis for a child with dwarfism varies by the particular diagnosis and the severity of the child’s condition, keeping in mind that there are over 200 forms. The most common overlying issue relates to orthopedic (bony, joint) problems with joints such as hands, feet, spine and hips.3 There is a higher prevalence of premature osteoarthritis among individuals with skeletal dysplasias, resulting in chronic joint pain. Occasionally surgeries are needed to correct the flow of fluid in the spine and brain (shunt) or help with orthopedic problems such as bowing of the leg or joint replacement for severe cases of arthritis. Sleep apnea is also more common in this population and an assistive device may be required to help with breathing at night. The child may encounter some challenges related to accessibility, however, an attitude of innovation and the availability of numerous resources for adaptive equipment today can nearly eliminate these limitations. Kids and adults generally have IQ’s in the normal range though can have subtest scores in visual reception that are slight below average and as a group, are at slight risk for needing extra help with their coordination and academics.4 Overall though, with intelligence in the normal range, kids with dwarfism can lead healthy and fulfilled lives and have the ability to thrive with a supportive family who can assist with the medical and surgical potentials through childhood.

Summary

  • Dwarfism is not frequently seen in international adoptions, but is seen worldwide
  • Little People of America (LPA) support group: http://www.lpaonline.org
  • These children need a supportive family that is comfortable with their short stature
  • They can have medical or surgical needs, but most are considered treatable and generally have excellent long-term outcomes.

References

1. Ho NC, Guarnieri M, Brant LJ, et al. Living with achondroplasia: Quality of life evaluation following cervico-medullary decompression. American Journal of Medical Genetics Part A. 2004;131(2):163-167

2. Anderson I, Goldberg R, Marion R, Upholt W, Tsipouras P. Spondyloepiphyseal dysplasia congenita: genetic linkage to type II collagen (COL2AI). Am J Hum Genet. 1990;46(5):896.

3. Kopits SE. Orthopedic complications of dwarfism. Clin Orthop. 1976;114:153.

4. Thompson NM, Hecht JT, Bohan TP, et al. Neuroanatomic and neuropsychological outcome in school?age children with achondroplasia. Am J Med Genet. 1999;88(2):145-153.

This article was generously shared by Dr. Judith Eckerle of the University of Minnesota,  Adoption Medicine Clinic. Child referrals are becoming increasingly complex, and adoption medicine professionals are identifying many more children with special needs from all countries that participate in intercountry adoption, as well as from the United States. To help families prepare for these changes, Dr. Eckerle and other medical specialists are writing a book: Health Topics For Preadoptive Families.

 

 




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