In many children with Crouzon syndrome, their nose is small and the bones in the middle of the face (midface) do not grow right. Their eyes are not protected because their cheekbones are too small. They may have trouble breathing, especially while they sleep.
For some children, surgery to remove adenoids or lymphoid tissue in the back of the nose (adenoidectomy) will improve their breathing.
Most children need Le Fort III midface advancement surgery combined with distraction osteogenesis to bring forward the jaw and other bones of the middle face.
Le Fort III midface advancement with distraction
Le Fort III midface advancement and distraction enlarges your child’s airway and helps their jaws fit together better. It also creates larger cheekbones to protect their eyes.
Seattle Children’s pioneered midface distraction in the Northwest. We perform this surgery more often than most centers in the country. Our method results in less scarring and a shorter distraction time.
BEFORE (Above, left): The middle of this girl’s face did not grow well because of Crouzon syndrome. This caused severe breathing problems.
DISTRACTION (Above, center): During surgery to reposition her face bones, a device called a distractor was attached. While she recovered at home, the distractor was adjusted to move the bones slowly apart. New bone grew to fill in the gaps.
AFTER (Above, right): After the procedure, the child has a larger airway so she can breathe during sleep. Her cheekbones are larger and her teeth fit together better.
Timing of surgery depends on your child’s needs
The timing of midface advancement is based on whether your child has:
- Chewing and speech difficulties caused by the jaws not aligning
- The need for eye protection
- Breathing problems while asleep
Most often, children with sleep apnea have the surgery at 7 to 9 years old to improve breathing. If your child has severe breathing problems, they may need a Le Fort III distraction as early as 3 years old.