NEW CANAAN, Conn. – Casey and Doug Famigletti are hoping for a huge turnout at a Cocktails for a Cause fundraiser Nov. 30 at Waveny House in New Canaan to help eradicate cytomegalovirus, a congenital birth defect that afflicts their daughter, Gracie.
CMV affects one in every 150 newborns a year, according to the federal Centers for Disease Control and Prevention, and statistics show that 80 percent of the population will become infected during their lifetimes.
Doctors discovered issues with Casey during a routine anatomy scan during her pregnancy. The ultrasound showed that Gracie, who is now 3 years old, had a dense-looking bowel, which could indicate a number of issues, including CMV.
Bloodwork confirmed that Casey was carrying an active CMV infection. An amniocentesis at Yale-New Haven Hospital showed that CMV had crossed through Casey’s placenta and infected Gracie as well.
“We knew it was our jobs as parents to not only bring her into this world, but to help her become the best that she could be,” Casey said.
Casey was given CMV immunoglobulin, an experimental drug to help fight Gracie’s virus in hopes of lowering the symptoms of the disease.
After Gracie was born, she was placed in the neonatal intensive care unit. Even if she survived, the Famiglettis were not sure whether she would be able to walk and talk.
Doctors diagnosed Gracie with bilateral deafness, pulmonary issues, eating difficulties and a sensory issue that has resulted motor and cognitive delays.
“We just took it one step at a time and did whatever we could to help,” Casey said.
Gracie was given an antiviral medication at birth to help her recover from the damage that occurred during the pregnancy.
Casey, a teacher at Parkway School in Greenwich, put her job on hold to be a full-time mom to Gracie, who receives speech, feeding, physical, aquatic and occupational therapy and attends a feeding group daily at school and privately. She also has cochlear implants and is fed through a gastro-intestinal tube.
“Every aspect of her life involves trying to rehabilitate the damage that was done from this virus,” Casey said.