Arthur Brown’s early years doesn’t exactly fit the mold of many new parents. Instead of first smiles and precious giggles, he cried constantly in severe pain and fatigue. Instead of a focus on new milestones and first steps, the focus was on figuring out what was troubling him and getting him well.
Much of his first few months of life and beyond were spent in and out of Akron Children’s Hospital, sometimes several weeks at a time, after being diagnosed with sickle cell disease at just 4 months old.
“I was very sick, had frequent pain crises and often got infections,” said Brown, whose parents carried the sickle cell trait, meaning they inherited the sickle cell gene, but they did not have any symptoms of sickle cell disease. “My life expectancy was 5 years.”
Now 27 years later at age 32, he’s thankful to still call Akron Children’s home, but fortunately on the other side. After being a patient here for 19 years, Brown now is giving back and helping others in desperate need as a paramedic on AirBear®, Akron Children’s medical helicopter. It’s a dream come true for a brave boy who beat the odds and is living his success story.
“I had a strong mindset and inner determination to get me through, and I still have that today,” Brown said. “My inner strength is a big part of how I’ve been able to thrive, along with faith, believing that you will be okay. And, I wouldn’t be here today without a phenomenal support system.”
As we celebrate National Sickle Cell Awareness Month, Akron Children’s honors Brown. His strength and determination carries a tone of hope and inspiration for others suffering from sickle cell disease.
It’s estimated that sickle cell occurs in about 1 out of every 365 African-American births, according to the Centers for Disease Control and Prevention.
Sickle cell disease is a red blood cell disorder, where the red blood cells become hard, sticky and contort into a crescent or sickle shape. The sickle cells die early, leaving a shortage of red blood cells and causing severe anemia, or reduced oxygen flow to the body’s organs. The crescent-shaped blood cells also can block blood flow, known as a sickle cell crisis, causing severe pain.
Sickle cell strong
As a child living with sickle cell, Brown suffered from extreme fatigue and frequent pain crises. He strived to live his life as a normal child, but sickle cell held him back.
He played competitive basketball and got involved where he could, but he was always the first kid to tucker out.
To make matters worse, Brown woke up most mornings earlier than normal in extreme pain. It was a struggle to pull himself out of bed and go to school. He had pain medication, but he did everything in his power not to take it. Otherwise, the medicine would knock him out and force him to stay home from school and sleep it off.
“I’d do everything to take my mind off the pain, like take a hot shower or exercise,” said Brown. “I was always in pain in the morning and exhausted because of it by the end of the day. It was a vicious cycle and eventually, it takes a toll on you.”
Around age 16, Brown had a minor stroke due to sickle cell complications. It was then that he had his first red blood cell exchange, which changed his life for the better.
In a red blood cell exchange, doctors take out a large portion of his blood and exchange it with fresh, healthy blood from donors. After his stroke, Brown began receiving red blood cell exchanges regularly, about every 6 weeks.
“Once I started the red blood cell exchanges, the amount of pain crises I experienced really slowed down for me and it cut down the amount of time I spent in the hospital tremendously,” said Brown, who still receives the exchanges to this day at an adult hospital. “It really helped me — I wish I’d gotten them a lot sooner.”
With his disease under control, he quickly got back to following his dream. After spending so much time in and out of the hospital as a child, he knew medicine and helping others was where he wanted to be. His dream was to one day become a flight medic.
But while in paramedic school, sickle cell struck again. He came down with pneumonia and a terrible sickle cell crisis that put him back in the hospital. He was on a ventilator for 3 days and missed 2 weeks of school, which put him crucially behind his classmates.
Once back, he had an overwhelming amount of catch-up to do. He asked his professor for help, and she agreed to sit down with him one-on-one after class to help him catch up. Once again, he overcame the odds and finished first in his class.
In 2010, Brown became a paramedic, serving in the Cleveland and Youngstown areas. He says he’s thrilled to be able to give back to other sickle cell patients he meets on the job.
“As a paramedic, I’m able to educate others when I pick them up,” Brown continued. “I tell them about the exchange transfusion and their minds are blown. I tell them to find a hematologist who will follow and treat you. I tell them to take care of themselves, get prescriptions filled and show up to their appointments. Instead of being reactive, I help them to be proactive.”
Then in 2018, Brown never dreamed he’d achieve his goal of becoming a flight medic at the very place where his story began.
Sickle cell may rear its ugly head once again, but Brown’s positive attitude and inner strength has proven he can take on anything.
“I’m not going to let sickle cell stop me from doing what I want to do,” said Brown. “Even as young boy, I realized I didn’t have the same stamina as the other kids, but I wasn’t going to let it stop me from accomplishing anything. I’m gonna do what I have to do to achieve my dreams.”