According to a story from Express Digest, young mom Emily Nixon, age 25, was heartbroken when her oldest daughter Darcy Roger, age 6, passed away only five days after her younger sister Beatrice was born. The infant was born two weeks premature and the two would have never met if she had been born when predicted. Darcy died as a result of a severe infection linked to VACTERL association.
About VACTERL Association
VACTERL association (vertebral anomalies, anorectal malformations, cardiovascular anomalies, tracheoesophageal fistula, esophageal atresia, renal/radial anomalies, limb defects) is a term that describes a group of birth defects that tend to occur together. As there is no known disease mechanism or cause, the symptoms are considered an ‘association’ rather than a syndrome. Most prevailing theories suggest a genetic origin. Almost every case is unique and some patients are born with defects that are untreatable and often die soon after birth. Many of the common defects, such as imperforate anus, kidney defects, and tracheal and esophageal abnormalities, often require corrective surgery soon after birth. Many patients are born physically small and have difficulty gaining weight. There is no standard course of management for VACTERL association since each case is different. To learn more about VACTERL association, click here.
Darcy’s Story
Darcy had a serious case of the association and had undergone a total of 20 surgeries in her six years. Darcy also had to use a colostomy bag until age three. She was at the hospital getting ready for another operation on her heart when she contracted a severe infection that would ultimately be fatal. Emily and her partner opted to spend five days in a temperature controlled ‘cold bedroom’ at the hospital with her body in order to say goodbye. She was able to get some photographs of the two sisters before Darcy passed.
Emily recalls how excited Darcy was to be a big sister. One time she even used her allowance to by a pair of slippers for Beatrice. Emily and her partner Kristian D’Rosario have since launched a clothing brand in honor of Darcy that will include shirts, hoodies, and bags.
The family wants to make sure that little Beatrice grows up knowing just how much her older sister cared for her.
