Luciana was born in November 2014, in the southern Bolivian city of Tarija. She lives with her five-year-old brother, Gustavo, and her mom, Victoriana. Victoriana was studying to be a nursing assistant, but left school to work to sustain her two children. She earns about US $160 a month cleaning the offices of the Tarija Town Hall.
Luciana was born with an extremely rare congenital heart defect known as Ebstein’s anomaly, in which the tricuspid valve — the valve between the chambers on the right side of the heart — doesn't form or function properly. It is most often associated with other malformations; in Luciana’s case, she also has a significant atrial septal defect (an opening in the wall between the left and right heart atriums).
Luciana was first diagnosed shortly after birth at her regular check-up. The offices of the mayor and the regional government helped Victoriana make the long trip to the Belga Hospital in Cochabamba to consult a pediatric heart specialist, who confirmed that Luciana has one of the most severe forms of Ebstein’s defect. She will need a series of surgeries, the first of which is only palliative to compensate for the defect until Luciana is strong enough for additional corrective procedures. Even before the first procedure, Luciana needed to gain weight and stabilize.
The baby’s condition was carefully monitored, and by her seven month birthday her doctors decided it was the moment to operate. Luciana spent 12 days recovering in the hospital, but is now back home in Tarija.
Luciana’s father has refused to assume responsibility for his child. As Victoriana explained to the social worker, “I have no option but to do it myself.” Fortunately, the local government has been supportive within its possibilities. Victoriana also has the commitment of the doctors at El Belga and the Cochabamba office of Solidarity Bridge, supported by donors including Isaac and Renee Goff, who will all continue their parts to give Luciana the best opportunity at life.