BABIES COUNT
Babies Count is a national registry of young children aged birth to 36 months of age with visual impairments that works in conjunction with public and private agencies to collect standardized epidemiological and demographic data regarding children, their visual conditions, and the systems created to support them and their families.

Our Story

Babies Count was first created in 1995 and is the only national database in the US to collect epidemiologic and demographic information on infants and toddlers between the ages of birth and 36 months who are blind or visually impaired. Information from this database has been used to make policy and budget decisions, to expand programs, to drive medical and educational research, and to track the changing face of blindness of children in our country today. The database is currently being reconstructed to reflect the ways that data is collected in the 21st century and to meet the evolving needs of participating agencies.

Noted feature changes:

  • The survey has been revised with input and collaboration from stakeholders for ease of completion and fidelity of responses.
  • Each question on the survey has available technical assistance and suggests ways to sensitively gather the information.
  • Data will be entered into the database directly from the survey using a computer, tablet or smart phone. The survey is compatible with both Microsoft and Apple products.
  • It is screen reader compatible.
  • In homes without Internet service, data will be saved in the survey offline and can be submitted after returning to an area with Internet accessibility.
  • Online webinar training will be available.
  • The survey will be available from this website: www.babiescount.org beginning March 1, 2016.

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The face of blindness is changing...

2022 Results

Babies Count National Registry of Children with Blindness or Visual Impairment (BVI) - aged birth to 36 months

Citation: Snyder, D., Rife, D., & Lyle, L. (2022). Babies Count National Registry of Children with Blindness or Visual Impairment, Aged Birth to 36 Months: 2022 Results. Babies Count. https://babiescount.org

Primary Eye Condition - Bilateral Group n %
CVI/DVM 244 32.3%
ONH 78 10.3%
ROP 60 7.9%
Albinism 21 2.8%
Structural 50 6.6%
Retinal 33 4.4%
Other 187 24.8%
Unknown/none 82 10.9%
Total 755 100.0%
Gestational Age n %
Full Term 332 44.0%
37 to 33 Weeks 187 24.8%
32 to 28 Weeks 63 8.3%
27 or less Weeks 77 10.2%
Unknown 96 12.7%
Total 755 100.0%
Non-Accidental Trauma (NAT) n %
Unknown 49 6.5%
Not NAT 677 89.7%
NAT 29 3.8%
Total 755 100.0%
Concurrent Medical Condition n %
None/Not Reported 201 26.6%
Neurological 488 64.6%
ASD 30 4.0%
CP/OI 190 25.2%
Congenitall brain ab 42 5.6%
Spina bifida 2 0.3%
Acquired brain 47 6.2%
Seizures 177 23.4%
Global Syndrome 74 9.8%
Chromosomal disorder 24 3.2%
Birth defect craniofacial/body 12 1.6%
Genetic disorder 38 5.0%
Endocrine 54 7.2%
Deaf or Hard of Hearing (DHH) 59 7.8%
Feeding problems 231 30.6%
Other Medical Condition 252 33.4%
Cancer 7 0.9%
Heart Disorder 52 6.9%
Tech Dependent 18 2.4%
Sleep issues 1 0.1%
GERD/reflux 5 0.7%
Born with addiction 10 1.3%
Respiratory Prob 114 15.1%
Allergies 30 4.0%
Viral/utero infection 6 0.8%
Kidney /liver problems 8 1.1%
Skin condition 1 0.1%
Level of Vision n %
Meets Definition Of Blindness 109 14.4%
Functions At The Definition Of Blindness 182 24.1%
Low Vision 245 32.5%
Typical Or Near Typical 216 28.6%
Unknown/No Report 3 0.4%
Total 755 100.0%
Developmental Need n %
Typical Support Needs 84 11.1%
Mild/Moderate Support Needs 408 54.0%
Itensive Support Needs 256 33.9%
Unknown/No Report 7 0.9%
Total 755 100.0%
Primary Learning Channel n %
Vision 336 44.5%
Tactual 96 12.7%
Auditory 192 25.4%
Unknown/No Report 131 17.4%
Total 755 100.0%
State (Percentage Of Surveys in Database) n %
Arizona 108 14.3%
Colorado 43 5.7%
Connecticut 9 1.2%
Delaware 19 2.5%
Iowa 9 1.2%
Kansas 1 0.1%
Kentucky 47 6.2%
Massachusetts 126 16.7%
Maryland 13 1.7%
Northern California 6 0.8%
North Dakota 6 0.8%
Nebraska 13 1.7%
New Mexico 122 16.2%
Tennessee 14 1.9%
Utah 76 10.1%
Vermont 6 0.8%
Washington 104 13.8%
Wisconsin 25 3.3%
Wyoming 8 1.1%
Total 755 100.0%

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The Babies Count National Registry's effectiveness and reliability is dependent upon the quality work of each state and each service provider entering data. The basic structure is as follows:

  • Each state will assign a lead agency in the database and then enroll the individual agencies within the state that serve B-3 children who are blind/visually impaired.
  • Each individual agency will create its own system for completion of surveys and training its staff.
  • And finally, each agency, including service providers, must become committed to collecting this data for each child on his or her caseload, both at entry and at exit to the program.
  • Each state’s lead agency as well as each individual agency will have access to its own data for analysis and planning purposes.
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Participating States

Babies Count will only work if, together, we create systems in every state to help us collect this essential data. States currently enrolling children:

  • Arizona
  • California
  • Colorado
  • Connecticut
  • Delaware
  • Idaho
  • Illinois
  • Indiana
  • Iowa
  • Kansas
  • Kentucky
  • Maine
  • Maryland
  • Massachusetts
  • Nebraska
  • New Mexico
  • North Dakota
  • Ohio
  • Pennsylvania
  • Rhode Island
  • Tennessee
  • Utah
  • Vermont
  • Washington
  • Wisconsin
  • Wyoming