For the Rodriguez-Bacero family, Sebastian’s birth was filled with mixed emotions when they unexpectedly learned their precious baby boy was born with Pierre Robin sequence, a rare condition characterized by a small lower jaw (micrognathia), a tongue far back in the mouth (glossoptosis) and difficulty breathing (upper airway obstruction). Babies born with this condition often have challenges with feeding and swallowing due to the tongue’s position at the back of the throat. In Sebastian’s case, his condition was diagnosed after he experienced respiratory distress when trying to feed from a bottle in the NICU.

“We didn’t know what life would be like for Sebastian or what the future would hold. It was definitely difficult at first,” said his mother Silvina.

The family was connected to Nicklaus Children’s Hospital’s Craniofacial Center, which is comprised of an extensive team of professionals consisting of a nurse navigator, surgeons, nurses, feeding and swallowing therapists, dieticians and psychologists, who met with Sebastian’s parents to provide a comprehensive plan of care for little Sebastian.

The team was able to quickly diagnose Sebastian with Pierre Robin sequence after noticing his small lower jaw, a third common characteristic of this rare condition. Because the jaw often grows and improves on its own, the care team held off on surgery to see if Sebastian’s condition would improve independently. When progress wasn’t noted after a few weeks, mandibular distraction surgery to lengthen Sebastian’s lower jaw was performed in the Kenneth C. Griffin Surgical Tower under the care of Dr. Jordan P. Steinberg. The plans for the surgery came as a relief to Sebastian’s parents, who had grown exhausted, frustrated and scared to take their infant home due to his respiratory issues and inability to successfully bottle feed.

After his surgery, speech therapists worked closely with Sebastian and his parents on his bottle feeding. Within weeks, Sebastian was already taking a bottle of milk on his own and meeting all of his developmental milestones. For Silvina, the best part was seeing Sebastian finish a bottle for the first time.

Like 80% of children diagnosed with Pierre Robin sequence, Sebastian also had a cleft palate. The Nicklaus Children’s Craniofacial Center team also performed cleft palate repair surgery on Sebastian 11 months after his jaw-lengthening surgery. Today, he is an active, curious and thriving toddler.

“For children with craniofacial differences like Sebastian, our goal is to not only ensure they have the best quality of life, but also that the family feels supported throughout the journey with the right specialists and information to ensure their baby is getting the best possible care,” said Dr. Steinberg.

“We are so grateful to the team for everything they have done for Sebastian to help him lead a long and healthy life,” said Silvina.