From Her First Breath, Baby Juliette Faced a Rare Condition That Changed How Her Face Developed

From the moment she took her first breath, Juliette needed help to keep breathing. Born at a little more than 5 pounds, she arrived already confronting a rare disorder that affects how the bones and soft tissues of the face form.

Doctors diagnosed Treacher Collins syndrome, a uncommon condition present from birth. In Juliette’s case it left her with a markedly small lower jaw, a cleft of both the lip and the palate on both sides, and outer ears that were severely underformed. Because her airway was so complex, the medical team began breathing support right after delivery.

Family photographs follow her path: a newborn in intensive care, later a smiling baby with a tracheostomy tube, and then a toddler on her feet, looking around and exploring. In one picture a red circle marks the area of her underdeveloped ear.

Treacher Collins syndrome can make breathing, feeding, and hearing difficult because the structures that normally support those functions do not develop in the usual way. Even so, Juliette continues forward with her family and her care team beside her — showing the same determination many children with this rare condition show as they grow.

Sources
Details come from the family’s account of Juliette’s birth weight, the immediate need for breathing support, the diagnosis of Treacher Collins syndrome, and the findings of an underdeveloped lower jaw, bilateral cleft lip and palate, and severely underdeveloped external ears. Background on the condition is based on established clinical descriptions of Treacher Collins syndrome as a rare congenital disorder of craniofacial development.