I’m Aware That I’m Rare: Billie Keith

phaware global association®
7 min readMay 7, 2018

The phaware® interview

Billie Keith is a mother on a mission. She discusses her daughter Brooke road to a pulmonary hypertension diagnosis, why Dr. Robyn Barst is her angel and why advocating on behalf of children with PH is so important.

My name is Billie Keith from Mason City, Iowa.

My daughter Brooke basically, she had some chest pain one day. Pulled some rib cartilage and had a chest x-ray. It showed that her heart was enlarged and I actually work in radiology. I supervise an imaging clinic, and I had a conversation with the radiologist, could see that her heart was enlarged and went back to the pediatrician and he was like, “well the pediatric cardiologist comes again in a couple of weeks. We’ll just see him then,” and I’m like, “No, she has something going on. We’ll be here Thursday when he comes in.” He took out a diagram and he said, “well, they did the EKG and they’re going to do the echo. It could be one of three things. You don’t want it to be this thing.” Then he just looked, he was of Indian decent and he just looked pale, ashen, sick. He just said, “I’m really sorry but, this is what it is” and we just sat in the room and just cried. You never forget the room, what they say, the diagram, I mean you remember all of that.

So you walked in with a child that was healthy for eight years. Actually, her traveling soccer teams, playing softball, all the sports, doing gymnastics, competing, cheerleading, and then to have them say there’s probably nothing they can do for her but you’re going to have to go straight up to Mayo Clinic and just pack your bags. You’re probably going to be up there for months. So we’re like, “oh my gosh.”

So he was talking to Mayo Clinic at six o’clock at night and they said come up the next day. So they said, they came out to the waiting room and said “how come this child’s never been to the doctor before? How come they didn’t catch this before she was eight?” Because hers was secondary to a heart condition, and so if that would have been caught younger, she…

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phaware global association®

Are You #phaware? Pulmonary hypertension (PH) is a rare, life-threatening disease affecting the arteries of the lungs. www.phaware.global