Treacher Collins Syndrome

If your obstetrician suspects that your newborn might have Treacher Collins syndrome, they’ll likely recommend genetic testing or imaging tests like X-rays or a CT scan to confirm the diagnosis.

What to expect at your first visit

It’s normal to feel nervous or scared when you bring your child in for their first appointment. There are a lot of unknowns on the path ahead, and we understand how frustrating that can be. During your visit, we’ll determine your child’s most time-sensitive needs and design a personalized treatment plan.

We’ll start by getting to know you and your child. We’ll talk about:

• Your family’s health history.
• Your child’s specific conditions related to Treacher Collins syndrome.
• The order in which we’ll approach treatment.
• How to give your child the best quality of life from an early age.

Meet Our Treacher Collins Syndrome in Children Team

When you choose us for your child’s treatment, you and your child will work closely with team of pediatric specialists chosen for your child’s specific needs. Not all children who have Treacher Collins need the same treatment. Your child’s care plan will depend on what conditions they have and the severity of those conditions. Your child’s team might include:

• Pediatricians.
• Pediatric otolaryngologists.
• Pediatric audiologists.
• Pediatric oral and maxillofacial surgeons.
• Pediatric dentists.
• Pediatric plastic surgeons.
• Child psychologists.
• Pediatric physical therapists.
• Pediatric occupational therapists.
• Social workers.

After we’ve met with you and your child, we’ll design a treatment plan tailored to your child’s unique needs. The goal of treatment is to manage your child’s symptoms and improve their day-to-day life.

We’ll treat conditions like breathing problems or trouble hearing first. Then we’ll focus on the cosmetic aspect of treatment. This may include things like surgery to repair your child’s eyelids or build their external ears.

Keep in mind that no two children are the same. Every child who has Treacher Collins syndrome has their own unique set of symptoms or characteristics. A few of the treatments we offer include:

Cleft lip and palate repair

If your child has a cleft lip or cleft palate, surgery can help repair the split. Cleft lip and cleft palate surgery involves rearranging or repairing the tissue in your child’s nasal cavity and the roof of their mouth.

Tracheostomy

Tracheostomy can help babies and children who have severe breathing difficulties due to Treacher Collins syndrome. A surgeon makes a small incision (cut) in your child’s neck and trachea (windpipe). This opens their airway and helps them breathe much easier. Often, your child’s surgeon can remove the tracheostomy once your child has surgery to correct their breathing.

Sleep apnea treatment

When the position of your child’s jaw or the soft tissues in their throat keep them from breathing properly during sleep, our pediatric experts can treat the problem either with or without surgery. Mild cases of sleep apnea can improve with a CPAP machine. More severe cases require surgery, which involves removing excess tissues in your child’s airway.

Eyelid surgery

Our pediatric experts do eyelid surgery to correct coloboma (a notch in your child’s eyelid). This is a type of reconstructive surgery that may involve fat grafts or soft tissue grafts. Correcting eyelid coloboma helps reduce your child’s risk for chronic (ongoing) dry eye.

Ear reconstruction

If your child has small ears (microtia) — or if they’re completely missing one or both ears — reconstructive surgery can help. During this procedure, a pediatric surgeon creates a new ear from cartilage or synthetic (artificial) materials. Typically, your child needs to be at least 6 years old for this type of surgery. In the meantime, they may be able to wear an ear prosthetic.

Sometimes, microtia can affect your child’s hearing. Your child may need a custom hearing device or additional surgery to correct their hearing loss.

Oral surgery

Many children with Treacher Collins syndrome have small or underdeveloped jaws. Corrective jaw surgery — along with braces — may be necessary to correct your child’s bite and align their teeth. We usually don’t recommend this type of surgery until your child reaches their teenage years.

Follow-Up Care

Kids with Treacher Collins syndrome typically need a combination of treatments over several years. Our team is here for your family every step of the way. We know that there’s no “one-size-fits-all” approach. And we believe that you and your child are an important part of the treatment process.

Even after surgery, we still want to check in with your child to see how they’re doing. We love to see them thrive, and we want to make sure they’re living life to the absolute fullest.

Taking the Next Step

When you find out your child has Treacher Collins syndrome, you’ll want caring, experienced pediatric healthcare providers in your corner. Cleveland Clinic Children’s team of specialists is ready to help. We’ll find the right treatment for your child so they can start off strong and live a full, healthy life.