Second opinion for midaortic syndrome gives Cameron a second chance

midaortic syndrome

Cameron Grubb likes to shoot Nerf guns, and even his own doctors aren’t immune from his aim — in fact, they often fire back. It’s a playful act that everyone welcomes, however, particularly since this 6-year-old has defied the odds multiple times in his young life.

Just three years ago, Cameron was struggling to survive after being diagnosed with extremely high blood pressure — so elevated, in fact, that his clinicians in Kansas thought the monitor must be broken. When they eventually confirmed the reading, it was 170/140, a dangerous level that sent him to the local intensive care unit for nine days. It wasn’t until months later that he was finally diagnosed with midaortic syndrome, a narrowing of the heart’s largest blood vessel, as well as renovascular hypertension, high blood pressure that results from decreased blood flow to the kidneys.

To Boston for a second opinion

In search of a second opinion, his mother Jackie — herself a nurse — began doing some research, which led her to Dr. Michael Ferguson in the Midaortic Syndrome and Renovascular Hypertension Program at Boston Children’s Hospital. “He reviewed Cameron’s records and told us that kids with midaortic syndrome are at high risk for strokes, heart attacks and kidney failure,” says Jackie. “Dr. Ferguson warned that Cameron was a ticking time bomb.”

The family arrived in Boston for the next steps. Drs. Heung Bae Kim and Khashayar Vakili initially attempted a groundbreaking procedure that Kim had developed called tissue expander stimulated lengthening of the arteries (TESLA), a three-staged procedure to repair Cameron’s blood vessels. Cameron was only the fourth child in the world in whom this procedure was attempted. The first two stages of the procedure were performed successfully. However, the final stage could not be completed because his aorta was too damaged. As a result, Kim and Vakili repaired the problem using artificial blood vessel grafts.

The recovery was long: Cameron required a feeding tube and had to learn how to walk again. But several months later, he was well enough to go home. In eight months, he had improved enough to join his family on a trip to Kansas City, where he watched his favorite sports team, the University of Kansas Jayhawks, play an exhibition game representing Team USA against Team Canada.

“We happened to have amazing seats, and Cameron spent the entire time dancing with the Jayhawk mascots on the floor of the arena just to the side of the court,” Jackie remembers. “It was the most fun ever.”

Dr. Michael Ferguson

Kidney auto-transplants 

Back home, they had hardly unpacked their suitcases when Cameron developed what seemed like flu-like symptoms. Certain he was experiencing kidney failure — a possible consequence of midaortic syndrome — Jackie rushed her son to the local emergency department.

“They insisted he probably just had strep throat,” she remembers. “So I called Boston Children’s. Dr. Ferguson is my lifeline. He always listens to my ‘mom meter’ and never makes me feel silly.”

Jackie’s intuition had been right. Cameron had become dehydrated and clotted the grafts supplying his kidneys, causing kidney failure and severe hypertension. Over the period of several days, Cameron’s condition worsened until his Kansas-based clinicians feared there was nothing they could do to help him.

When we arrived, I collapsed into Dr. Kim’s arms. I was devastated, but knew I had completed my mission to get my child to Boston Children’s. Now I was handing over Cameron’s life to Dr. Kim.

But when they told his family that he likely wouldn’t survive, Jackie refused to give up. After a series of frustrating delays, they headed back to Boston. “When we arrived, I collapsed into Dr. Kim’s arms,” says Jackie. “I was devastated, but knew I had completed my mission to get my child to Boston Children’s. Now I was handing over Cameron’s life to Dr. Kim.”

As the doctors and nurses began to work on Cameron, Jackie joined Kim to review Cameron’s scans together, an important ritual they had connected through in the past.

The return to Boston was the start of a long journey to save Cameron, one that culminated in bilateral kidney auto-transplants. This surgical procedure relocates a patient’s own kidneys lower in the abdomen and attaches them to healthy blood vessels, preserving their function.

treatment for midaortic syndrome

Staying active with midaortic syndrome

During his recovery, the first-grader never lost his sense of fun, playing video games with his nurses and even challenging one to a dance-off. As he healed, he and his mom sometimes snuck outside to practice kicking a football, a simple activity that Jackie credits with helping him regain his strength.

Today, Cameron is a healthy kid who no longer takes any medication at all. The youngest of four children, he enjoys cuddling his family’s pets, jumping on a trampoline with his siblings and just being goofy. He even recently made it to the finals of one of the largest and most difficult wrestling tournaments in the state of Kansas — a major accomplishment that would have been impossible just a few years ago.

In November, Cameron will turn 7 — a milestone his family once feared he might not reach.

“He was born on Veterans’ Day,” explains Jackie. “And he was born a warrior.”

Learn more about the Midaortic Syndrome and Renovascular Hypertension Program at Boston Children’s Hospital.