Beyond Sickle Cell: Once a Patient, Now a Patient Advocate

Brandon was born in 1995. A routine newborn screening blood test at his hospital revealed that he had sickle cell disease, a genetic blood disorder where the body doesn’t create enough healthy red blood cells to carry oxygen throughout.    

>Related: Why is Newborn Screening so Important? 

“With sickle cell disease, the blood vessels get clogged with half-moon or sickle-shaped red blood cells,” said Donna Boruchov, MD, Medical Director of Connecticut Children’s Pediatric Sickle Cell Program. “This can make kids like Brandon have pain in different parts of their body—and it can last hours, or days, and be extremely painful. We call these flare-ups a sickle-cell crisis or pain crisis.”  
 

Brandon meets his new hematology/oncology care team at Connecticut Children's

Childhood cancer and blood disorders like Brandon’s can be complex, so a one-size-fits-all approach doesn’t do the trick because every kid is different. He needed care that was 100% dedicated to kids and 100% dedicated to him. 

So a little before his fifth birthday in 2000, Brandon was transferred to Connecticut Children’s from the hospital where he had been receiving his care.  It was at that time Brandon’s family learned of their new Center for Cancer and Blood Disorders, where he would continue to receive a mix of inpatient and outpatient care over the next 20 years. 

Brandon recalls something akin to the celebrity treatment when he thinks back to his time at Connecticut Children’s. “Every time I came in, they would roll out the red carpet,” said Brandon. “They’d be ready for me—and give me the best care possible.” 

Brandon was such a frequent flyer, that he, Dad and Grandma practically had his nurse, Kate Steven, APRN, on speed dial when they knew another trip to the hospital was looming. “They had my treatment waiting for me as soon as we’d arrive,” Brandon recalled. 

“Brandon is amazing guy that’s been able to look toward the future,” Kate said. “Despite his challenges and pain with sickle cell, he always talked about his hopes and plans. He and his family are super supportive and dedicated to helping others, too,” Kate added.

When Brandon needed surgery as a child (there were many; keep reading) he remembered riding to the OR in style while his care team cheered him on. He always chose to drive the black Jeep down the hall to the OR.  

Those with sickle cell will quickly say to anyone who asks that treatment involves a little bit of everything. This was Brandon’s experience. From childhood, into his teenage years and well into adulthood, he was under the care of Dr. Boruchov and her hematology-oncology team. His treatments ranged from briefer trips to the ER every 6 weeks during a pain crisis or a bout of fever, to blood transfusions in his teenage years, and more complex surgeries that required the expertise of pediatric surgery and orthopedic surgery.

People with sickle cell are at high risk for infections in the blood stream, bones and joints. When Brandon was between 12 and 16 years old, he needed a total of four infection-related surgeries in both femurs, knees and legs. His care team also inserted growth plates and screws into his legs for catch-up growth and performed tibia biopsies.  

"It's truly special working for a children's health system."

A few years after college — and a couple jobs that weren’t his cup of tea — Brandon stumbled on the job opportunity at Connecticut Children’s: Patient Access Associate. Instantly, he knew it was the perfect fit. He picked up so many shifts, in fact, that he made the decision to come on full time. 

During breaks, he visits Kate and Dr. Boruchov. “It still feels like family here,” said Brandon. “It’s truly special working for a children’s health system. Whenever I had to come to the ER, I’d always receive excellent care. I wanted to be able to play a part in that excellent care,” added Brandon.  

>Attention, readers! Connecticut Children’s has a book club exclusively for Connecticut Children’s sickle cell thrivers.

Brandon admits that as an adult living with sickle cell, he still faces some challenges. He gets bouts of tiredness, and has low hemoglobin at times, and pain every now and then. He does, however, manage at home most days with a medication routine, staying hydrated and treating pain areas with heat or massage.   
  
Brandon’s instinct serves him well: he has a firm grasp on what he can treat at home, and what might need a little extra medical attention. He did need two hip replacements as an adult, in addition to the four surgeries he had as a preteen and teenager at Connecticut Children’s.  

But none of this stops him from doing anything he sets his mind to. 

Faith is central to Brandon and to his family—and he has been to church every Sunday since he was a kid. “He is thankful for his faith in God; it’s helped him immensely,” recalled Brandon’s dad, Trevor. Also central to their family life was Brandon's late mom, with whom Brandon had an incredibly special relationship until she passed away when Brandon was 11 years old. "Everything Brandon did in life, he did for his mom," said Trevor, "Without her support initially, it would have been much tougher." 

“I’m amazed and grateful for all the strength Brandon has shown. He has a passion for helping people—and he is appreciative for what has happened and where he is now. I’m also thankful for his medical team, especially the wonderful nurses and doctors who really listened carefully to how he was feeling. He’s truly come full circle by ‘giving back’ to Connecticut Children’s.” 

“Equally vital to Brandon is his support system of friends he can lean on for a good laugh or cry. The people in his life encourage him to try out-of-the-box things. Among them have been axe throwing, parasailing, scuba diving, helicopter riding and zip-lining. Mix in a little rock climbing, off-roading and swimming with the dolphins in Atlantis. 

I don’t want sickle cell to control me. I want to control my life. In my driver’s seat. In my black Jeep,” proclaimed Brandon.

“When people hear ‘sickle cell,’ they think life is over, especially parents of young children. You can thrive with sickle cell and be OK. I want everyone to know that.”