Genetic Counseling

When your child is diagnosed as deaf or hard of hearing, you will receive a lot of information at once. Some families are told right away if the hearing loss is progressive or stable, or if it is sensorineural, mixed, or conductive. Others may not get clear answers at first.

Genetic counseling can help your family learn more about the cause of your child’s hearing status if you want that information. Not every family chooses to do genetic testing, and that is okay, this service is there if you want to explore it.

Sometimes, the cause of hearing loss can be found through a medical work-up that may include a visit to an ENT (Ear, Nose, and Throat doctor) or an otologist (a doctor who specializes in the ear). These doctors may review your family history, your child’s birth, and health history, and sometimes recommend tests such as imaging, lab work, or genetic testing.

What is Genetic Counseling?

Genetic counseling is a way for families to understand:

• Whether their child’s hearing loss has a genetic cause.
• If the hearing loss is likely to change (progressive) or stay the same.
• Whether there are any related health conditions to be aware of.
• How this information may affect siblings or any children you may have one day.

A genetic counselor is a healthcare professional trained to explain genetic information in a clear, family-friendly way and help you make informed decisions about next steps.

Why Families Choose Genetic Testing

Families often choose genetic testing because it can:

• Give more information about the cause of their child’s hearing status.
• Provide information to plan communication and educational supports, such as sign language, hearing assistive technology, spoken language, or a combination.
• Help guide medical decisions, like whether to consider hearing aids or implants.
• Identify any other health concerns that may need to be monitored.
• Offer clear information about the likelihood of hearing loss in other family members.

What to Expect

• Genetic testing usually requires a simple blood or saliva sample from your child.
• The counselor will explain the process, what results might mean, and answer your questions.
• Not every family chooses testing. It is a personal decision, and your care team should respect your choice.

Next Steps

If you want to explore genetic counseling, ask your ENT, pediatrician, or audiologist for a referral. Many children’s hospitals have genetic counseling programs, and there are clinics throughout Ohio and across the country.