Communication Ability in Persons with Trisomy 18 and Trisomy 13

Abstract

The purpose of this study was to assess communication abilities among a sample of 10 individuals with Trisomy 18 and Trisomy 13. These 10 individuals were diagnosed with Trisomy 18 (n = 8) or Trisomy 13 (n = 2) and had a mean age of 15.96 years. The sample consisted of one male and nine females. Caregivers completed a case history and reported on words and gestures understood and/or produced. Participants were also videotaped during communication temptation tasks. Auditory comprehension was reported to be higher than expressive language. No participant produced intelligible words or word approximations, yet most produced hand gestures. The process and results of these 10 cases point to a potentially promising approach for assessing communication abilities in individuals with Trisomy 18 and Trisomy 13.

Keywords::

• Trisomy 18
• Trisomy 13
• AAC
• Gesture

Acknowledgments

We would like to thank the participants and their families and the Support Organization for Trisomy 18, 13, and Related Disorders (SOFT) for their support of this work.

Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the article.

Appendix 1

Case History Form (adapted from the University of Virginia Speech-Language and Hearing Clinic)

Participant’s Date of Birth:

Age of Participant:

Name of Person completing this form:

Relationship to the Participant:

Hearing History

How do you think your child hears?

Has your child had a hearing test before? Results.

Does your child respond when called?

Does your child follow directions?

Does your child respond to sounds around him/her?

Does your child startle to loud sounds?

Is there a family history of hearing loss?

Does your child wear hearing aids?

Speech and Language History

Age when your child babbled? ____ Said first words? ____ Put words together? ____

Your child right now is (check those that apply)

Table

Do you understand most of what your child says?

Do strangers understand most of what your child says?

Has your child received speech-language therapy?

Have other family members had speech-language problems or speech/language therapy?

Is English the only language spoken in the home?

Feeding/Swallowing

Does your child demonstrate eating habits appropriate for his/her age?

Does your child have a history of reflux?

Pregnancy and Birth History

Was the pregnancy with this child full-term?

Were there any complications during pregnancy? During the delivery?

Medical History

Has your child had ear infections?

When was the last one?

Has your child ever had ear tubes?

Does your child have seasonal allergies/sinus problems?

Does your child have allergies to foods, medicines, or environmental agents?

Has your child had serious illness/hospitalization/surgeries/accidents?

Is your child’s general health good?

Is your child taking any medications?

Has your child’s physical development been normal?

Are you child’s fine motor skills normal?

Educational History

You child currently attends ____ grade, at_________________ school.

Is your child doing well in school?

Is your child reading at grade level?

Does your child enjoy school?

Is your child receiving special services at school?

Family Information

Parent name(s)

Sibling name(s) and age(s)

Is there any other information that might help us better understand your child or work more effectively with him/her?

Comments:

Notes

1. The Passy-Muir Tracheostomy & Ventilator Swallowing and Speaking Valve is placed on the hub of the tracheostomy tube or in-line with the ventilator circuit to allow for air flow through the vocal colds (i.e., voicing) and out the oral cavity for communication. It is available from Passy-Muir Inc.

2. The TechTalk is a speech-generating AAC device manufactured by Mayer-Johnson, Inc. It has eight recording levels and eight message cells (each measuring 2.75 inches (6.985 cm) and can store 54 messages up to 4.5 s in length.