What to expect after your child's hearing loss diagnosis

As a new mom you have months to prepare for what you think life will look like with a new baby. From reading books, to listening to podcasts, and even testing out different strollers, you’ve done the work to educate yourself and prepare as much as possible. 

One thing no one ever prepares you for is what life is like having a child with hearing loss. 

You may have never even known that your baby would receive a newborn hearing screening at birth. That wasn’t on the list of things to expect while you were expecting. So when you found out your baby did not pass their newborn hearing screening you were shocked. Weeks go by while you’re navigating through this new rhythm of life before you have your appointment with the audiologist when they confirm what you had never expected. Your baby was born with hearing loss. 

This can come as a total and complete shock. In fact, statistically speaking 90% of babies who are born with hearing loss are born to normal hearing parents so most of the time it is a complete shock. Most parents have never met anyone with hearing loss, aside from maybe their grandparents and truly have no idea what to expect for their child's future. 

The information to follow after your child receives an unexpected diagnosis can seem like a blur as the emotional and logical sides of your brain seem to be battling against each other. 

One thing to know before becoming overwhelmed with appointments and spending sleepless nights scrolling online, is that it is okay to pause. It is okay to stop and breathe and to take a moment to grieve the situation you have found yourself in. It is okay to just be for a minute before jumping into this journey. 

The purpose of this blog post is to serve as the notes you wish you would have been able to take at that first appointment. To know what next steps to take but could not quite think clearly enough to take it all in.

THE TEAM OF SPECIALISTS

Each member in your child's hearing health care team will play a specific role in their hearing journey. Below is a list of specialists that you and your child will likely be introduced to and what role they play throughout the process.

The Audiologist

• Someone who specializes in diagnosing and treating hearing loss.
• Find an audiologist who specializes in working with children who is also someone you trust and feel comfortable with. Do not be afraid to advocate for yourself and ask to be seen by the same audiologist for every appointment or ask to be seen by someone else if you don’t think it’s a good fit. Establishing consistent care with someone you trust is the first step in building your tribe.  

The Ear, Nose, and Throat Physician (ENT)

• Someone who specializes in treating medical conditions within the ear.
• The ENT will provide medical clearance for hearing devices and order additional tests to help investigate the cause of the hearing loss. The tests they are likely to order or recommend could include imaging such as an MRI or CT scan to evaluate the structure of the inner ear and genetic testing to determine the cause of the hearing loss.

The Geneticist

• Someone who specializes in diagnosing and treating genetic conditions or disorders.
• Depending on your child’s hearing loss or the results of their genetic test you may have additional appointments with a genetic counselor to discuss the meaning of these results and what this might mean for your child’s future.

The Ophthalmologist 

• Someone who specializes in diagnosing and treating eye disease.
• Along with your child’s hearing loss diagnosis it may be recommended that they have their eyes examined as well. In some cases, not all, hearing loss can be associated with vision loss and it is important to diagnose this early as well.

The Pediatrician 

• Someone who specializes in the overall health of your child.
• They will play an important role in educating you and completing referrals to the above specialists as needed. 

The Speech Language Pathologist 

• Someone who assess, diagnoses, treats, and helps to prevent communication and disorders in children.
• Depending on your child's age and development, it may be recommended that they are evaluated by a speech language pathologist to help support their communication goals. 

The Early Interventionist

• Every state offers free support and services for children from birth to three who are at risk for developmental delays. A hearing loss diagnosis will qualify your child for these services and someone will likely be reaching out early on to provide support.
• Early intervention is a critical component to your child’s success. I highly recommend taking advantage of this free service in your state!

THE LIST OF APPOINTMENTS

Navigating through the throws of an unexpected diagnosis can be undoubtedly overwhelming. But what’s the saying? “How do you eat an elephant? One bite at a time.”

These notes are meant to serve as a guide for some tangible next steps in your journey and to help you put one foot in front of the other. 

• Follow-up audiology appointment either to repeat testing or discuss hearing devices.
• Schedule an ENT appointment for medical clearance of devices and to investigate the cause of your child’s hearing loss.
• Genetic testing
• Imaging such as an MRI or CT scan
• Enroll in Early Intervention program   

Throughout the chaos and the storm, do not forget to schedule joy and take some time for you throughout your day. Whether it is getting outside for a walk, soaking in those newborn snuggles, or treating yourself to an iced coffee, remember that taking care of YOU is also an important part of this “to-do” list. 

LOOKING FOR MORE SUPPORT?

If you’ve landed on this page it’s likely because you’ve spent some time in the throes of google or social media to try and find resources to better understand your child’s hearing loss.

That’s exactly why I created this FREE PDF, The ABCs of Audiology: 26 commonly used terms, phrases, and acronyms to understand your child’s hearing loss. So stop googling and click the link HERE to download. 

Looking for personalized support? Through my 1:1 consultations or packages I provide parents with personalized support, customized education and resources, and actionable tips to help you and your child thrive throughout your journey! 

Want to work together? Schedule a FREE 15 minute consultation or send me an email at [email protected]. I would love to connect with you and learn more about how I can support you through your child’s hearing journey.