Learn About the Treatments for Treacher Collins Syndrome, Their Benefits and Their Risks

Learn About the Treatments for Treacher Collins Syndrome, Their Benefits and Their Risks
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Hearing Loss

One of the most prevalent problems for children suffering from Treacher Collins syndrome is hearing loss. Due to the fact that many children are born with blockage in the ears or simply undeveloped ear canals, the ability for the individual to hear is greatly impacted. When this sort of issue is present, it is not considered to be true deafness, as this requires damage to the nerves in the ear or brain. Since the nerves are usually fine, this allows physicians to work with the problem in a variety of ways.

Treatments for Treacher Collins syndrome commonly require surgery to remove the area in which blockage occurs. This generally opens up the passageway, allowing for sounds to properly enter the ear canal. Challenges with this, however, can occur depending on the type of tissue that is filling the area. While soft tissue is most prevalent, sometimes bone from the skull blocks the auditory canal, requiring more extensive surgical methods. Additionally, many children are born with heavily malformed or missing ears, sometimes even being out of position, which adds to the surgical challenges.

If the child is born with partially intact ear canals, parents and doctors may choose to simply supply the child with a hearing aid. This will amplify the sounds the child hears without further damaging tissues for a lower cost than surgery. Again, one of the major challenges with this is the malformation of the ears, which may require the use of a specially-designed hearing aid.

Speech and Language Education

Oftentimes, deformities to the mouth can result in problems for the child when speaking. If the mouth or throat are affected by the disease, it can greatly limit the ability of the child to make sounds and properly communicate. The best treatment for Treacher Collins syndrome impacting the language capabilities is simply education. Teachers can work with the child to find ways to communicate using different sections of the mouth. Other options include the possibility of teaching the child sign language. When this condition is combined with ear problems, the challenge can become even greater.

Corrective Surgery and Cleft Palate Treatment

The most common tool at the disposal of physicians in treating Treacher Collins syndrome is corrective surgery. Plastic surgeons are able to fix many of the superficial problems as well as bone structure issues. Each of the treatments is personally-designed for the patient as there are no two subjects identical in their malformities.

Perhaps the easiest problem caused by Treacher Collins syndrome to treat is the cleft palate. Children are often born with a section of the lip and upper mouth that does not form correctly. This is caused by the failure of the cranial plate to properly come together during development. Unfortunately, many times fixing this is relegated to a number of corrective surgeries. This can occasionally be avoided if doctors wait until the child has lost his or her deciduous teeth and grown permanent ones in their place.

During the first few months of life, physicians are able to perform basic surgery to close the lip itself. This process is known as the Millard procedure. The muscles of the upper lip must be realigned to make sure the individual will be able to purse his or her lips properly. Secondly, the scar is blended in with the center of the lip or tucked underneath the nose.

The palate itself may also need surgery to close. In the most extreme cases, the upper part of the mouth is left open and exposes the tissues in the skull. This can cause speech problems and also be dangerous when eating. Most modern procedures use a device known as a Latham appliance to correct this problem. This is a tool inserted into the upper jaw and attached to either side of the palate. Over time, doctors essentially screw the two portions of the jaw together as the child grows, ultimately creating a normal palate. The final part of the opening is then filled with bone tissue. This is one of the more extreme treatments for Treacher Collins syndrome, however the results are nearly invisible using modern surgical procedures.


“Treacher Collins Syndrome” Cleft Palate Foundation: https://www.cleftline.org/publications/treacher_collins

“Mandibulofacial Dysostosis Treatment and Medication” eMedicine: https://emedicine.medscape.com/article/946143-treatment

Image Source

Cleft Palate. (Supplied king97tut at Wikimedia Commons; Public Domain; https://upload.wikimedia.org/wikipedia/commons/9/92/14046555_HAPPY2.jpg)

This post is part of the series: Facts About Treacher Collins Syndrome

Treacher Collins syndrome is a genetic condition caused by mutations to the TCOF1 gene found on chromosome 5. Treatment methods such as corrective surgery and education can aid children born with problems such as facial and cranial malformations.

  1. All About Treacher-Collins Syndrome
  2. A Guide to the Treatment Options Available for Treacher Collins Syndrome
  3. Who is at Risk for Treacher Collins Syndrome?