Grace’s Story

ACPAACPA Family Services, ACPA Family Services News

Grace was born with Pierre Robin Sequence–a recessed jaw creating a small airway and a cleft of the soft palate. She also had a unilateral cleft lip as well.

She had trouble breathing and eating and had severe obstructed sleep apnea. So, at two weeks old, she had her first surgery to cut and pull her jaw forward. After 6 weeks in the NICU, she was finally able to come home. She still struggled to eat and was tube fed for 6 months.

Grace dealt with infections from the hardware in her jaw and her bones were not healing. So, at 3 months, she had her second surgery. They fixed her cleft lip and put permanent medal plates on her jaw. At 11 months old, she had her third surgery to fix her cleft palate.

Her first year was full of ups and downs, both disappointments and excitements. I know everyone says babies with clefts are so strong…well they are right. Grace has had so many painful moments in her short life and she has come out of each one stronger and with a smile on her face.