When Their Child Is Born Deaf, Parents Need Accurate Information

child born hearing loss
Jane Madell
January 5, 2023

I just returned from the EDHI (Early Detection of Hearing Impairment) Conference in Jacksonville, Florida. It was the first EDHI meeting I attended so I was unsure what to expect. The meeting is attended  by representatives of state early intervention programs and by professionals who work with early intervention. The professionals include speech-language pathologists, auditory-verbal practitioners, audiologists, teachers of the Deaf and hard-of-hearing children, psychologists, social workers, administrators, and parents. This sounds like a plan for a great meeting.

When I entered the hotel lobby I was a little surprised to see a lot of Deaf adults signing with voice off. It’s been a long time since I have seen that at a meeting.

I expect a lot of signers at meetings like the National Association of the Deaf or similar organizations, but this meeting was primarily for issues relating to infants and pre-schoolers. I was surprised.

Childhood Hearing Loss: It’s Not the Same Old Deafness

I have been a pediatric audiologist for almost 50 years. Things have changed dramatically in the field since I started out. Back then, the technology was extremely limited. We had hearing aids, but they were not very powerful. The models at the time did not provide sufficient gain for children with severe or profound hearing loss. There was also a lot of distortion. We would often fit younger kids with body aids, since the behind-the-ear options were so bulky they would not stay on a child’s head. The hearing aids worked alright for mild to moderate losses, but that was about it.

Nowadays, we have access to much more advanced hearing aids and options like cochlear implants. Modern hearing aids can provide enough power and gain to be helpful for severe losses, serving as a good temporary solution until cochlear implantation. Of course, the implants themselves are life-changing for the profound losses.

Between state-of-the-art hearing aids and implants, we can confidently say that almost every child with hearing difficulty is now able to hear and access sound with the appropriate technology. The only exceptions would be children missing a cochlea altogether.

Beyond better devices, there have been crucial improvements around early diagnosis and intervention. Newborn hearing screening identifies babies with hearing deficits right away in the hospital after birth. When I began in audiology, we considered 18 months old to be “early” detection. Now the standard is that babies who fail their screen get a complete diagnostic evaluation by 3 months of age and begin interventions by 6 months. I personally think 6 months is still too late when we have the capability to catch issues immediately and begin therapy. But it is leaps and bounds better than where we used to be time-wise. Because babies are identified earlier, they have much greater protection against developmental delays. We start auditory and speech access immediately rather than waiting dangerously long.

Research now also shows clearly that auditory brain development requires consistent auditory input in those critical early months. Children using only visual communication modes first will likely not ever fully develop auditory processing if attempted later. By amplifying sound and speech from the start, we set up babies for the best language outcomes downstream.

How Has All This Changed Parental Decisions?

Let’s remember that 95% of deaf kids are born to parents with normal hearing. They communicate using spoken language. When we ask parents what their goal is for their child, 85% of parents report that they would like their child to listen and talk.

This is a big change from the situation before newborn hearing screening. Then about 40% of families chose sign language and the rest chose auditory-verbal, auditory-oral, or cued speech. It is clear that the world is changing. Many schools for deaf children are closing or becoming smaller as more children get mainstreamed.

More and more parental support exists so families can have the energy and know-how to do what’s needed to help their children succeed.

What is the Role for Sign Language?

There is and always will be a place for sign language. It does make communication easier in noisy situations and when you are not wearing technology, but is it what we want as the primary communication mode for infants and children currently being identified with hearing loss?

In my mind, parents who choose listening and spoken language are making the right decision. With the technology available today, deaf children can hear. Therapy is available to teach families how to help their children learn, and schools are helping children be successfully mainstreamed.

If deaf children can communicate using listening and spoken language the way their peers do they have limitless opportunities. If they cannot, their choices are limited. Children who only sign have fewer employment choices and fewer social opportunities. Some children who communicate using listening and spoken language will learn to sign as teenagers or young adults, but the data is clear that children who learn sign first will not be as successful using listening and spoken language later because the auditory portion of the cortex will not develop as fully.

What Upset Me at the EDHI Conference?

At the EDHI meeting I saw a parent who was considering cochlear implants surrounded by signing adults who were telling the parents that they were going to damage their child by giving her an implant. (She was crying.) I heard one presenter report that it takes at least 2 years to learn to hear with a cochlear implant and that during this time the child will have no language. (This is definitely not true. Children will start hearing when the CI is turned on, but just as with typical hearing children, it will take a lot of listening to learn to use the information.)

I heard a presenter report that the only way a child can learn to read is through sign language. In fact, the average reading level for children who graduate from schools for the Deaf is third grade.

Parents Need Correct Information

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Parents must make very difficult decisions when their child is identified with a hearing loss. They need to make an educated decision about the choices for their family. Some choose listening and spoken language and others will choose signing. But parents need to have honest information to make those decisions.

I understand that there are people who believe strongly that signing is the appropriate method to educate deaf children. That is fine. They should explain to parents why they believe that signing is the right choice. But that information should be based on current evidence – not on what might have been true 20-30 years ago.

 


Jane Madell, PhD, has a consulting practice in pediatric audiology. She is an audiologist, speech-language pathologist, and LSLS auditory verbal therapist, with a BA from Emerson College and an MA and PhD from the University of Wisconsin. Her 45+ years experience ranges from Deaf Nursery programs to positions at the League for the Hard of Hearing (Director), Long Island College Hospital, Downstate Medical Center, Beth Israel Medical Center/New York Eye and Ear Infirmary as director of the Hearing and Learning Center and Cochlear Implant Center. Jane has taught at the University of Tennessee, Columbia University, Downstate Medical School, and Albert Einstein Medical School, published 7 books, and written numerous books chapters and journal articles, and is a well known international lecturer.

 

**this piece has been updated for clarity. It originally published on May 5, 2014

 

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