Key points

• Life with Treacher Collins syndrome has its challenges, but with modern assistive devices, quality of life, hearing, and speech improve considerably
• Bone-anchored hearing systems and bone-conduction hearing aids help individuals hear more clearly without the use of a normal ear canal
• Speech apps are essential tools for TCS patients to enhance their communication, boost confidence, and improve daily interactions with others
• Accommodation in the workplace and classroom allows those with TCS to thrive academically and professionally
• People with TCS can live independently and lead everyday lives with the right technology and assistance

Introduction 

Treacher Collins syndrome, or TCS, is a congenital disorder that affects facial growth, often leading to hearing loss due to poorly formed or missing outer and middle ear structures.⁶ If you or your loved one has TCS, you may be considering the potential for hearing and communication improvement. Fortunately, technology offers many assistive devices that make life easier and more fulfilling.⁷

This guide leads you through the most appropriate hearing aids, communications devices, and other assistive devices that aid TCS patients in overcoming day-to-day challenges and living more independently.

How can assistive devices help individuals with Treacher Collins syndrome?

Those with TCS commonly experience conductive hearing loss, in which sound cannot reach the inner ear due to structural problems.⁶ Some of the best available solutions are discussed below.

Bone conduction hearing aids (BCHA)

Since the majority of TCS patients are born without normally formed outer ears or ear canals, conventional hearing aids are ineffective.² Bone conduction hearing aids overcome this by passing the vibrations directly through the skull bones to the inner ear. Some popular ones include:²

• Baha System: A small, discreet device that clips onto a flexible headband or is surgically placed for better sound quality
• Ponto System: An outstanding bone-anchored hearing system known for comfort and sound quality

Bone-anchored hearing system (BAHS)

There are more permanent solutions for severe hearing loss, such as Bone-anchored hearing systems (BAHS). This hearing aid is surgically positioned behind the ear and produces a more natural, more distinct sound. One model that has gained popularity is the Cochlear Baha 5.³

Cochlear implants

In some cases, when the inner ear is also damaged, a cochlear implant could be considered.⁴ But as most hearing loss in TCS is conductive, not sensorineural, bone conduction hearing aids are usually the best solution.²

Frequency modulated (FM) system

Background noise can make it hard to hear speech, especially in the classroom or a meeting setting. FM systems are wireless microphones that the speaker, teacher, or parent wears, with the sound directly transmitted to the listener’s hearing instrument.⁵

Personal sound amplification products (PSAPs)

These are small amplifiers that make sounds louder and clearer. They are less advanced than hearing aids but are helpful in less noisy situations for those with mild hearing loss.⁸

Other assistive devices for individuals with TCS

Only part of the answer is hearing aids. People with TCS also have difficulty with speech, facial asymmetry, or other problems that require other assistive devices.⁶ The following sections will discuss other communication aids, facial prosthetics, speech and communication tools, and lifestyle adjustments that simplify daily life. 

Speech and communication tools

Since TCS may interfere with the development of the palate and jaws, some children may struggle to pronounce words or parts of words clearly.⁸ The following devices may assist:⁵

• Augmentative and alternative communication (AAC) devices: These include speech-generating devices, apps, and picture boards to aid in communication
• Speech therapy apps: Online platforms that provide speech exercises to help improve the clarity and pronunciation of words
• Voice amplifiers: Small, portable units that boost the volume of an individual’s voice, helpful when public speaking or addressing a gathering

Facial prosthetics and adaptive equipment

Some patients with TCS turn to prosthetic devices to enhance form and function:^9-12

• 3D-Printed facial prosthetics: custom-made ears, cheekbones, or other structures can improve the symmetry of the face and boost self-esteem
• Bone-conduction glasses can be offered as an alternative when fully developed ears are absent in some TCS patients, especially if regular glasses do not fit properly
• Nasogastric tubes, adaptive bottles, and airway-assist devices aid with eating and breathing issues

Educational and workplace accommodations

To be successful at school or work, individuals with TCS may need special accommodations, which include:

• Classroom audio systems: Microphones are used by instructors to broadcast their voices through speakers so that hearing-impaired students can hear lessons more clearly
• Live captioning services: Real-time transcription during meetings and lectures prevents information from being missed
• Workplace accommodations: Employers may create hearing-friendly work environments with quiet workstations and assistive listening devices for individuals with TCS

FAQs 

Do all individuals with Treacher Collins syndrome benefit from bone conduction hearing aids? 

Bone conduction hearing aids are the preferred option for most with TCS because they bypass the outer and middle ear and directly stimulate the inner ear.

Are cochlear implants an adequate solution for TCS? 

Cochlear implants are considered only when the inner ear has also been compromised, which is less common in TCS. Bone conduction hearing aids are usually the preferred solution.

Which assistive devices help children with TCS communicate more effectively? 

AAC devices, speech therapy apps, and FM systems are great assistive devices to help children with speech disorders communicate effectively.

Do hearing aids fully restore hearing in TCS? 

No, but they do enhance hearing and communication considerably. Periodic appointments with an audiologist ensure the best results.

Summary

TCS is a condition that affects facial growth and typically leads to hearing loss because the outer and middle ears do not develop fully. This prevents the sound from reaching the inner ear, but assistive technology helps. BCHA and BAHS are great because they transmit sound through the bones in the head, not the ear canal. FM systems, which eliminate background sounds, and personal sound amplifiers, which increase the volume, also benefit some individuals.

Aside from hearing, TCS also presents difficulties with speech and communication due to discrepancies in the palates and jaws. Communication is made easier with the assistance of speech therapy apps, voice amplifiers, and augmentative and alternative communication devices. Some individuals may need facial prosthetics, adaptive eyeglasses, and assistive breathing and eating devices. Classroom audio systems, live captioning, and workplace accommodations make it possible for those with TCS to be active and achieve their goals.