I'm Aware That I'm Rare: Billie Keith
Billie Keith is a mother on a mission. She discusses her daughter Brooke’s 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 probably would have never developed pulmonary hypertension. A lot of kids don’t know why they have it, but she knows and hers was preventable really.
At that point, she was severe. Her pressures were around and about a hundred. They wanted to do a cardiac cath the following Monday I think. This was a Friday the first day we were up there. Basically they said “there’s nothing we can for these kids.” They said “we only really see this in third world countries where the kid had no medical treatment and where it progressed to this point.” They said “come back and we’ll do the cath and see if there’s anything we can do.”
So we came back Monday and her pressures were high. Her resistance was high. They just said, “you’re probably just going to have to take her home and love her. The average life span for a child is about one to three years, but we really don’t think there’s anything that we can do for her. If we do some surgery she’s probably not going to make it. There’s no medicines that are going to help her. So if you put her through all of these medical interventions you’re probably not going to prolong her life, and you’re actually going to decrease the quality of her life making her go through all these things.”
So that’s a tough day leaving the hospital with that prognosis. They said they wanted to talk to some experts that had been around a while and see if they could find some other experts around the country. So thank God they found Dr. Barst, our angel.
Anyway, they found Dr. Barst and so we flew out and saw her and she said, “don’t just look at the numbers. Look at this girl. She’s playing soccer. She’s competing and stuff. You’re counting her out.” She said “there’s hope” and she looked right at her and she said “you’re not going to live like a sick kid.” She said “you’re going to run this show. It’s your body. You are going to control the pulmonary hypertension. You’re not going to sit bubble-wrapped on a couch. You’re going to go live your life,” but she said “I’m not going to just keep you alive because I can.” She said “it’s a progressive disease. I’m not going to put you in the hospital and hook you up to all these machines and just keep you alive forever because we can, but you’re going to live a life doing what you want and you’re going to be in control of that.”
She didn’t talk to us when we went and saw Dr. Barst. She just looked straight at Brooke, just straight to her and just I think that seeing her and giving her that empowerment, that’s how she grew up being able to advocate for herself.
She had to switch schools, and she had to go to school in a different town because the principal and the PE teacher were giving her detentions for not running laps. We think this is going to be an easy conversation and it turns into months and Dr. Berman, by then Dr. Barst had retired and Dr. Berman said “we’re done.” So she had to stay home for a week and a half. For ten days she had no school until she could get into another school and then it was in a different town, so she had no busing and she had to go away from her friends, away from her family, away from the school district her siblings were in and she had to learn how to advocate for herself. I think that Dr. Barst really helped empower her to do those things and be able to advocate for herself.
It was a long hard road. She’s had two heart surgeries. A life flight for tachycardia. We’ve had I think about seventeen trips to New York in nine years. She has doctors in three states, Iowa, and then emergencies we go to Mayo Clinic and then we still go to New York every six months, so I think for pediatric patients, it’s really important to find a pediatric pulmonary hypertension specialist.
Brooke’s going to be eighteen. She’s going to be an adult, but I’m always going to advocate for the kids. I’m going to advocate for the adults too, but in Iowa, maybe there’s a handful of adults and they meet and have each other. We looked for a support group early on and there were no kids. So it was maybe a handful of adults that were a few hours away, so it wasn’t very helpful to us. When she got five years out I thought oh my God, they only gave her one to three years to live, now she’s twelve, we’re five years out and she’s never met another person with pulmonary hypertension.
In New York you go and there’s a heart center and you don’t know which other kids maybe have it, but it’s a really small clinic and so she hadn’t really met anybody else. We went to Orlando and the very first people we saw on the elevator were the Doaks, Christina and Katie Doak. They were the very first ones and they went off to get coffee. Rayni was there and we saw her again in Chicago. Then we met Doreen and Qadri in New York and these kids went through transplants. Several kids that we’ve met have passed away. It’s just a hard, tough, disease and I think they look great. They look perfect and it’s really hard to see what’s going on beneath that and how much they’ve been through and how much they have to fight to stay looking like that and advocate.
I think the biggest way that I have tried to advocate for PH is we haven’t done any real big fundraisers and stuff. We participate sometimes from afar in some of that but, mostly we try to meet the psycho-social needs because we know what it feels like to live in rural Iowa and be completely isolated. We started sending packages in December, so it started out with I think three countries and then last year we were at five countries.
I think the psycho-social part is important. You know you have to have the body, mind and spirit all have to be healthy and if you treat all of those things, so we try to do more that way for kids. I’ve had parents call me and I say the most important thing is you need to get to a pediatric pulmonary hypertension specialist. Most adults can find one close by. We are within a couple hours of one, but the pediatric one, now you’re talking probably not within twelve hours of one. It’s a big difference of driving a couple hours to find a specialist and having to go twelve hours or a thousand miles. Mayo Clinic told us there’s nothing they could do. She would be here for one to three years, and if we wouldn’t have got to Dr. Barst they would have been absolutely right. They would have been right because without treatment, she wouldn’t be doing as well.
Once she started getting treatment, her pressures just came down and she was more active. She used to get bluer lips, she used to get more short of breath, she used to have more chest pain, and she’s progressively actually got better. They pretty much from the beginning said today is the best day you’re going to feel the whole rest of your life because this is a progressive disease. You’re going to continually get worse, and just her last cath last June, a year ago, her pressures were in the thirties and they were like, “you didn’t even do any medication changes, like what happened? How did that happen?” We don’t even know, but like she said, she’s exercising more. She has maybe an anti-inflammatory diet, and just living positively, I think just all of that stuff adds up, but sometimes modern medicine … I think these kids are pioneers. These medicines are all new. They don’t know now. They’re writing their own story.