Sound Waves

Every family responds differently to the news of their baby’s hearing loss. This can be a deeply emotional experience for many, filled with challenges as you juggle medical appointments and adjust to the new stresses of having a baby with hearing loss. Amid these demands, prioritising your own well-being is as important as caring for your child.

Acknowledge your feelings

It is completely natural to feel a range of emotions – shock, sadness, grief, and even anger – after receiving your baby’s diagnosis. It can feel like you are on an emotional roller coaster.  Allow yourself to experience these feelings. While it can feel like you are alone, there is a lot of support available to help you and your family through this time.

Stay connected with your partner

Open and honest communication with your partner is important. Lean on each other for support, share your feelings and concerns, and set aside time for regular check-ins. Spend quality time together, not just as parents but as partners, moving ahead together.

Include family and friends

Hearing loss affects not only your child but your entire family. Sharing your thoughts and feelings with trusted family and friends can help them better understand how to support you. If you have other children, be mindful of their needs – they might also need one-on-one time with you.

Take care of yourself

The demands of frequent appointments and learning new things can be draining. Make sure to carve out time for yourself to rest and recharge. Eat well and get as much rest as possible – catching sleep when you can.  Exercise is a wonderful way of relieving stress and providing a sense of wellbeing. A walk each day is good for you, your partner and your baby. Taking care of yourself is not selfish – it’s essential for your wellbeing and ability to care for your little one.

Accept help from others

In the early days, everyday tasks can feel overwhelming. Accept help from family and friends, whether it’s a good meal, babysitting or help with school pick-ups. Letting others lend a hand can make life easier and more enjoyable.

Connect with other parents

Many parents find comfort in connecting with other parents who have walked the road before them. Sharing stories, advice, and emotional support with others can offer a sense of community and strength. Reach out to your newborn hearing screening team about local parent groups or parent mentors. Aussie Deaf Kids has an online support group for parents of children with hearing loss.

Seek professional support if needed

If you’re feeling overwhelmed, anxious, or depressed, consider seeking help from a mental health professional. The newborn hearing screening programs have social workers or counsellors who can help you process your emotions and provide guidance during hard times.

We continue to ride the roller coaster of emotions throughout our child’s life, especially during times of change or transition. This is perfectly normal. Seeking help when needed and taking care of yourself allows you to be the best parent you can be.

Parenting advice and support

A detailed list of parent helplines is available from raisingchildren.net.au

When you share news about your child’s UHL, expect a range of emotions. While everyone will likely care, not everyone will show it openly. Some people may be unsure about what to say or do, and some may avoid saying or doing anything, which can be upsetting. Others might offer stories of people they know with UHL and minimise your experiences. Remember, these responses are generally well-meaning, but they can be overwhelming. It is OK to say, ‘I appreciate your concern, but now is not a good time for me.’

Parents can find it difficult to discuss their child’s unilateral hearing loss diagnosis with family and friends, especially when they are still processing the diagnosis themselves. It is helpful to be clear and factual when explaining what UHL is and how it affects your child. You can emphasise how a quiet environment and speaking face-to-face will help your child hear and understand conversations better.

It’s important to acknowledge that discussing the diagnosis can be difficult. In some cultures, there may be stigma or misconceptions about disability, making parents reluctant to disclose their child’s hearing loss. If this is the case, seek support from healthcare providers, trusted friends or support groups who understand your situation. Sharing your experiences in a safe and understanding environment can help alleviate some of the burden and provide you with strategies to communicate more effectively with others.

The number of appointments and professionals you see in the early months after diagnosis can seem overwhelming. Some you will see once or twice, but a number will become a regular part of your life as your child grows. You and your family are the most important people on your baby’s team but a good team of health professionals who can guide and support you is invaluable. Professionals will come and go, but you are there for the long haul.

Note: We use the term ‘professionals’ to mean any of the hearing health professionals you might encounter.

General Practitioner

A general practitioner (GP) specialises in family medicine and is usually the first point of care for most people seeking health care. Finding a good family doctor (GP) can be a valuable asset for the whole family. Your GP can provide referrals to other health professionals and specialists. It is often helpful to ask for recommendations from family and friends with young children about good GPs in your area. Build a relationship with your GP and educate them about UHL—you will quickly become more knowledgeable than them.

Other medical specialists

Ear, Nose and Throat Specialist (ENT)

ENTs are doctors trained in the medical and surgical treatment of ears, nose and throat conditions, including hearing disorders and ear infections. The ENT can investigate possible causes of your child’s hearing loss and treat any underlying ear infections. Some ENTs also perform cochlear implant surgery. All children with hearing loss should see an ENT.

Paediatrician

A paediatrician is a doctor who specialises in the care and treatment of babies and children. The paediatrician will monitor your child’s growth and development and any ongoing health needs. It is recommended that all children with hearing loss see a paediatrician.

Geneticist

Geneticists are doctors who specialise in genetic diseases or disorders. A geneticist can investigate whether your child’s hearing loss has a genetic cause and advise you on the risks of a similar genetic hearing loss if you have more children.

Ophthalmologist

An ophthalmologist is a doctor who specialises in diagnosing and treating eye disorders. Children with hearing loss may also have problems with their eyesight. They should have their vision tested by an optometrist or ophthalmologist before starting school—or earlier if you are concerned.

Other healthcare professionals

Audiologist

An audiologist is a healthcare professional who specialises in diagnosing, managing, treating and monitoring hearing and balance problems. Audiologists fit hearing aids and program cochlear implants. If your child uses a listening device, the audiologists at Hearing Australia will be responsible for your child’s audiological management until they turn 26. If an audiologist outside Hearing Australia monitors your child’s hearing, find an audiologist with clinical experience working with young children. Audiology Australia has a directory of audiologists on their website.

Social worker or family support worker

Newborn hearing screening programs usually refer families to a social worker or a family support worker (their title varies from state to state) within their program. They are trained to provide counselling, guidance, and assistance. They can guide and support you until you connect with Hearing Australia and early intervention services. They can advise you about any financial or other assistance available to you.

Early intervention service

Early intervention provides services to families to assist their children to get the best start in life. Early intervention aims to help your baby with hearing loss learn to communicate, use any available hearing, and interact socially. Early intervention professionals might include:

• Speech pathologists are trained to assess and treat people with communication difficulties. Speech pathologists deal with all aspects of communication, including speech, writing, reading, signs, symbols, and gestures.
• Auditory-verbal therapists (also called Listening and Spoken Language Specialists) are trained in Auditory-Verbal Therapy, which encourages children with hearing loss to use their hearing to listen, process verbal language and speak. 
• Teachers of the Deaf are teachers who have done additional training to teach children with hearing loss.
• Other allied health professionals, such as physiotherapists and occupational therapists, might also be included in your child’s team, depending on their needs.

National Disability Insurance Scheme (NDIS) Early Childhood partner

Early childhood partners are local organisations funded by the NDIS with specialist skills in early childhood intervention. 

• Before your appointment, write down any questions or concerns you have. It’s easy to forget them in the moment, and having a list ensures you address everything important.
• Don’t hesitate to ask any question, no matter how small it may seem. Remember, there are no silly questions when it comes to your child’s health. Many others have likely had the same questions.
• Make sure you fully understand the information and advice given by the doctor or audiologist before leaving the appointment. If English isn’t your first language, ask for an interpreter to help your understanding.
• Ask for copies of any reports, test results, or written recommendations. Keeping these documents can be helpful for future reference and can aid in tracking your child’s progress.
• It is perfectly reasonable to ask for clarification or to question a professional’s advice. If you’re unsure or uncomfortable with the plan for managing your child’s hearing loss, seeking a second opinion can provide additional reassurance and confidence.

As the parent of a child with hearing loss, you will accumulate a lot of paperwork. It is a good idea to keep good records that are organised and easy to find.

There are a few good reasons to keep records:

• To keep track of who you see and the outcome of each visit. Ask each professional to send you a copy of their report for your records.
• To have an accurate medical history for your child. You will be asked the same questions repeatedly, and it helps to have all the information in one place.
• The National Disability Insurance Scheme can request reports and assessments.
• Keeping records, such as test results and school reports, shows how your child is progressing and can help you decide when changes may be needed.
• There may be times when you need to advocate for your child to receive the services or support they need. Good records and documentation are vital when advocating for your child.

Getting started

A complete, well‐organised record system will save you time and frustration in the long run.

The following list of possible records may help you get started:

• list of professionals and their contact details
• medical reports
• audiograms and audiological reports
• progress reports from allied health professionals
• educational assessments and reports
• important correspondence (mail and emails) from hearing health professionals, the National Disability Insurance Scheme, and service providers
• manuals and warranties for any devices
• records of repairs and replacement parts for hearing aids and other assistive listening devices.