IOWA CITY, Iowa — Madison Williams was born with Oculo Auriculo Frontonasal Syndrome, a rare congenital malformation that causes multiple head and facial anomalies, including cleft lip and palate, deformed nostrils, and malformed eyes. She was transferred to the University of Iowa Stead Family Children’s Hospital the day after she was born and stayed in the neonatal intensive care unite (NICU) for more than three months. There she received a tracheotomy to help her breathing and a gastronomy tube for feeding.
Madison has had 17 major surgeries and countless procedures. She was the first patient at the hospital to have vertical expandable prosthetic titanium rib (VEPTR) rods implanted in her back to help straighten her back and separate her ribs so her ribs can grow as she does.
Read Madison’s story here.