Treacher Collins Syndrome

Treacher Collins syndrome (TCS) is a condition that affects the way a child’s face develops, particularly in the eyelids, cheeks, ears and jaw. At Children’s Hospital, our team specializes in caring for babies and older kids with TCS.

With expert care, many kids with TCS can have full, healthy lives. At MU Health Care, you have access to all the pediatric specialists your baby needs to thrive. Your child’s care team is led by pediatric plastic surgeons, who offer advanced reconstructive surgery for newborns and older kids with Treacher Collins syndrome.

Causes and Symptoms of Treacher Collins Syndrome

TCS is a condition that affects how your baby’s face develops. The disorder is caused by a genetic mutation, which can be inherited.

Babies with TCS are born with mild to severe facial differences, such as:

Small, underdeveloped lower jaw, which can cause breathing or feeding issues
Small or “flat” cheekbones
Small or underdeveloped ears (microtia) and hearing loss
Eyelids that slope downward
An opening in the roof of the mouth (cleft palate)
Abnormally large mouth

With TCS, these features affect both sides of your baby’s face. Although these differences are not painful, they could impact your child’s development.

When to Seek Care for Treacher Collins Syndrome

Sometimes, your OB/GYN can detect early signs of TCS during a prenatal ultrasound. In other cases, your baby may be diagnosed with TCS after they are born.

To see our pediatric plastic surgery team, you can get a referral from your OB/GYN or pediatrician. Or, you can reach out to the plastic surgery nurse directly.

How We Diagnose Treacher Collins Syndrome

Our team is skilled in diagnosing kids born with a range of craniofacial conditions. First, you’ll see a pediatric craniofacial surgeon, a plastic surgeon trained in reconstructive surgery of the head and face. Then, we can work with other specialists, like pediatric ear, nose and throat specialists (ENTs) as needed.

We may order tests, such as a computed tomography (CT) scan of your child’s head. We may also recommend genetic testing for your baby, which can detect gene mutations that cause TCS. Our coordinator can help schedule these tests for you.

How We Treat Treacher Collins Syndrome

Some kids with Treacher Collins syndrome benefit from several surgeries to help address their differences. For milder issues, we may postpone surgery until your child is older. When developing the treatment plan, we’ll guide you through what you can expect in the short and long term.

Jaw Surgery

If your baby’s jaw affects their breathing or feeding, we may recommend jaw surgery soon after they are born. We offer an innovative technique called mandibular distraction to lengthen the jawbone with a special device.

In some cases, performing jaw surgery soon after birth can help prevent the need for a temporary airway (tracheostomy).

If your child has mild jaw issues, we may delay surgery until later childhood or the teen years. For older kids, we may be able to use a piece of the child’s own bone to create a longer jaw.

Cheekbone and Eyelid Surgery

If your child’s lower jaw does not affect their breathing or feeding, we may recommend cheekbone surgery first. Using bone from your child’s skull, we can reconstruct the cheekbones.

In middle to late childhood, we can perform another surgery to correct your child’s eyelids and cheeks. We may also suggest eyelid surgery earlier if your child cannot close their eyes properly to help prevent vision loss.

Cleft Palate Surgery

If your child has a cleft palate, they may need several surgeries as they grow older. It may be possible for your child to have their first procedure by their first birthday.

Ear Reconstructions for Microtia

We perform advanced ear reconstructions for kids with ear differences (microtia) beginning at age 6. Our team provides custom ear reconstruction using some of your child’s rib cartilage. We also offer implantable devices that can be inserted under the skin on the head to create ears.

When needed, our experts can also perform middle-ear surgery for your baby to improve their hearing.

Other Specialized Support for Families

As part of an academic health system, we can provide your family with other supportive services as your child grows. We offer:

Speech-language pathologists, who help your child if hearing loss affects their speech development.
Neuropsychologists, who can assist with social and emotional difficulties related to TCS.
Developmental pediatricians, who specialize in monitoring the growth of kids with complex health needs.
Social workers, who can help ensure your child’s needs are met at school.
Genetic counselors, who provide guidance for your family on genetic testing for TCS.