I’m Aware That I’m Rare: Stephanie Volino (242)

The phaware® interview

Pulmonary hypertension caregiver Stephanie Volino discusses her daughter Anna’s road to a PH diagnosis following the loss of her other daughter, Sophia, who passed away from pulmonary hypertension after one week of finding out that she had this horrific disease.

My name is Stephanie Volino. I am a caregiver of a young lady, Anna Volino, who has pulmonary hypertension, since she was four years old. I am also a caregiver of a little two year old girl, Sophia-Lyn Volino, who passed away from pulmonary hypertension after one week of finding out that she had this horrific disease.

The first time we heard pulmonary hypertension was when my daughter Sophia was born in August of 2005. Her umbilical cord was wrapped around her neck and I had to stop mid-push to allow the doctor to unwrap the cord and then when she finally did come out and they cut her cord, they realized her breathing was labored so they whisked her away very quickly and she was put into the NICU on oxygen and the doctor said that it was “like a pulmonary hypertension.”