Raising and Educating a Deaf Child

International experts answer your questions about the choices, controversies, and decisions faced by the parents and educators of deaf and hard-of-hearing children.

Question from M.U., Maryland

One of my grandsons was born deaf. Although there is no history of deafness in the family, my daughter’s doctor said that her son’s condition is probably genetic. Can you explain?

Question from M.U., Maryland. Posted August 23, 2011.
Response from Marc Marschark - NTID

This is a great question, since it is often believed that if something is genetic it has to be “running in the family.”  Most parents, and even some health professionals, are surprised to learn that 50% of hearing loss has a genetic basis. However, a child can have a genetic-related hearing loss even if no one in the family has hearing loss. Therefore, it is very important that parents, like your daughter, follow through with referrals to a clinical geneticist—even as they are addressing their child’s hearing and communication issues. Learning more about the cause of your grandson’s hearing loss can help doctors understand the complete picture of his health. Most children with hearing loss do not have other health problems, but a few do. A referral to a genetics doctor may help find these problems so that your daughter and her family can make the best possible decisions about your grandson’s healthcare.

A new brochure, Hearing Loss, Genetics and Your Child has been designed both to connect families like yours with genetics professionals, and to prepare them for a genetics appointment. The brochure also answers other questions families may have, such as who will pay for genetic testing, and contains basic facts on genetics-related hearing loss. The brochure was developed by a team of medical geneticists, genetic counselors, audiologists, parent advocates, and health science information specialists led by Kathleen Arnos, PhD, FACMG, Professor of Biology and Genetics Program Director at Gallaudet University in Washington DC, whose career has been devoted to understanding genetics and hearing loss. It is being distributed by the National Coordinating Center for the Regional Genetic and Newborn Screening Services Collaboratives (NCC), housed at the American College of Medical Genetics (ACMG), which funded its development.

Hearing Loss, Genetics and Your Child is available in printed and downloadable pdf formats. It is written in layperson’s terms and is available in both English and Spanish.  It can be accessed electronically at no cost at www.nccrcg.org under the “Resources” tab. If you have any further questions about the hearing loss brochures, or would like to connect with the National Coordinating Center, you can contact either Matthew Tranter (mtranter@acmg.net) or Judith Benkendorf, MS, CGC (jbenkendorf@acmg.net) or by calling 301-718-9603.