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2015 National Deaf-Blind Child Count Etiologies

Over 75 specific etiologies are identified in the 2015 National Deaf-Blind Child Count. Some are exceedingly rare with less than five cases, others are much more prevalent. There are 13 etiologies with at least 100 cases.

While complications from prematurity continues to be the most commonly identified etiology, the prevalence of CHARGE Syndrome continues to increase. In 2015 there were 926 children and youth identified as having CHARGE Syndrome. While still relatively rare, the prevalence of children with Stickler Syndrome and Dandy Walker Syndrome has also continued to increase.

Congenital Rubella, which has long been associated with the development of the deaf-blind TA system is no longer a prevalent etiology. In 2015 there were 40 individuals whose etiology was identified as Rubella. The majority of these individuals are 14 years of age or older.

The heterogeneous nature of the population cannot be overstated. The etiologies or causes of deaf-blindness bring unique issues and challenges. Some are relatively more common, such as CHARGE syndrome, Down syndrome, Usher syndrome and cytomegalovirus (CMV). Some are very rare, with less than five individuals nationally, such as Batten disease, Prader-Willi and Kearns-Sayre syndrome.

Etiologies


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Primary Identified Etiologies and Totals


(Ages birth through 21*    N>100)
*Some states continue to provide services through the end of the school year in which the individual turns 22 years old.
Hereditary Syndromes/Disorders
CHARGE Syndrome
926
Usher Syndrome (I,II,III)
295
Down syndrome (Trisomy 21 syndrome)
286
Stickler Syndrome
127
Dandy Walker Syndrome
120
OTHER: Hereditary/ Syndrome Disorders
2487
Pre-Natal/Congenital Complications
Cytomegalo-virus (CMV)
303
Hydrocephaly
215
Microcephaly
213
OTHER: Pre-Natal/ Congenital Complications
636
Post-Natal/Non-Congenital
Asphyxia
195
Severe Head Injury
170
Meningitis
156
OTHER: Post-Natal/ Non-Congenital
651
Complications of Prematurity
1039
No Determination of Etiology
1755


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