Meet Trinity

Born: 2014

Diagnosed: 2014

Trinity's Story: Trinity was born January of 2014 at 36 weeks weighing only three pounds and ten ounces due to Interuterine Growth Restriction (IUGR). She was diagnosed with Cornelia de Lange Syndrome after seven months. 


She spent four weeks in the Newborn Intensive Care Unit (NICU). She was tube fed for three weeks, then bottle fed for three months, and finally breastfed until she was thirteen months. She had Gastroesophogeal Reflux Disease (GERD) and

projectile vomited.

At eighteen months she got a gastrostomy tube and fundoliplication. She's developmentally delayed and did not start walking until she was at two-and-a-half years of age. She is bottle fed and purees she regressed with chewing. Trinity's hand on her right side is undersized and she is unable to extend her elbow on that side.