Medical Mysteries: A boy's collapse exposed a heart

A mood of jittery anticipation pervaded the emergency department of Children’s National Hospital in Washington late on a Saturday afternoon in September 2022 as a team of nearly two dozen nurses, doctors and technicians awaited the arrival of a 14-year-old boy.

Akinbiyi Akinwumi, known as BB, had suddenly collapsed at an indoor trampoline park near his home in Prince George’s County, Md. He quickly regained consciousness but had trouble speaking and was complaining of chest pain and numbness. Paramedics called to the scene noted an unusual and worrisome elevation on his electrocardiogram and wondered if he might be having a heart attack — a vanishingly rare event in someone so young.

By the time the ambulance crew hustled him into the hospital’s trauma bay, BB was looking around the room, a good sign to Gil Wernovsky, the critical care cardiologist who was the first doctor to see him.

BB’s blood pressure and heart rate were reassuringly normal and Wernovsky mentally ticked through a list of possible causes of his collapse: dehydration; a heart rhythm disturbance known as an arrhythmia; sepsis, a life-threatening infection; myocarditis, a rare but serious inflammation of the heart wall; a drug overdose or even Lyme disease.

The pediatric cardiology fellow began to perform an echocardiogram, a test that uses ultrasound to assess heart function.

As an image flashed on the screen, Wernovsky recalled, there was a collective “audible gasp, followed by complete silence.”

There, in terrifying detail, was the cause of BB’s problem — and of the months of unexplained fatigue, dizziness and chest pain that preceded it.

The ER team immediately mobilized to prepare BB and his family for emergency surgery. “We had to move very quickly,” Wernovsky said. “We really didn’t know if we were minutes away from … a fatality.”

BB’s mother, Shron Akinwumi, remembers feeling simultaneously bewildered by what doctors were telling her and intent on projecting the brave face her younger son badly needed. She and her husband, Akin, a physician and epidemiologist, signed consent forms, answered questions about do-not-resuscitate orders and tried to process the warning that their previously healthy child could die in surgery.

“Look, I just want you to save my son,” Shron remembers telling doctors before he was wheeled into the operating room.

BB’s fraught diagnosis was in sharp contrast to his unusually rapid recovery. Less than four days after the teenager arrived, critically ill, in an ambulance, he went home.

“He recovered so fast we barely had time to talk to him,” Wernovsky said.

For months before he wound up at Children’s National, BB, a basketball player, had felt pain in his chest, numbness in his arm and periods of fatigue and sluggishness that he largely avoided mentioning to his mother or anyone else. His symptoms were “very random,” recalled Shron, director of patient access at GW Medical Faculty Associates.

When she asked the pediatrician about the pain in BB’s chest, the doctor told her he might have pulled a muscle — one of the most common causes of pediatric chest pain — and advised that he take Tylenol, which seemed to help. During previous visits doctors hadn’t found anything out of the ordinary.

In early August, six weeks before he fainted at the trampoline park, BB had gone to a Maryland gym with his older brother, Akintola. While working out he complained of feeling dizzy, “tingly and generally not right” and then briefly passed out. He called his mother.

“I said, ‘Sit down, I’ll come get you,’” Shron recalled. She arrived to find him perched on a curb in the parking lot, where he had vomited. BB had been wearing a hoodie and Shron thought he might be suffering from heat stroke or a migraine with aura. For two years he had experienced infrequent headaches, which typically responded to over-the-counter medicine.

Once home, BB took a brief nap. When he awoke and said he didn’t remember being at the gym, Shron initially thought he was joking. When she realized he wasn’t, she called 911. Paramedics examined him; his vital signs were normal but an EMT suggested she take him to Children’s National.

The pair spent six hours in the ER. BB’s memory returned and his neurological tests were normal. Shron was advised to follow up with his pediatrician and referred to the hospital’s cardiology clinic after an EKG showed left ventricular hypertrophy, thickening in the left chamber of the heart that can be caused by high blood pressure, a heart valve problem or intensive athletic training.

Shron said she called BB’s pediatrician who told her the episode might be migraine-related and advised that he take it easy.

Six weeks later, about 30 minutes after dropping BB and his cousin at the trampoline park where Akintola works, her phone rang. A park supervisor told her that BB had “gone limp” mid-jump; an ambulance had been called. His brother had scooped him up and run to the parking lot to await paramedics.

Shron raced to the scene, then followed the ambulance to Children’s National.

As the roomful of people stared silently at the image on the screen, BB spoke up. “That’s not supposed to be there,” he said, sounding both incredulous and fearful. A large growth shaped like a stalk of cauliflower was attached to his heart; it resembled a tree swaying in a hurricane. “I was just in shock,” he said.

The ER cardiologists tried to break the news gently, Shron recalled. That odd-looking mass attached to the left side of BB’s heart was a tumor. It wasn’t clear if it was benign or malignant, Wernovsky told Shron, but it had to come out immediately.

Wernovsky said he was virtually certain the tumor was a cardiac myxoma — a mass that is rare in adults and even rarer in children. In his 38-year career the cardiologist has seen two others: one in a newborn, the other in a 10-year-old.

Myxomas are nearly always benign, although BB’s was “in a malignant place. I can’t think of a scarier activity than jumping on a trampoline,” Wernovsky noted, because the huge tumor easily could have blocked blood flow to BB’s heart, killing him instantly.

“As much as I wanted to reassure her that it was benign, I couldn’t,” he added. “You can’t be sure until you take it out.”

“ ‘Do what you need to do,’ ” was Shron’s response, Wernovsky recalled. “She really had her stuff together. She was a great advocate for her son.”

Shron said her most vivid memory is of trying to reassure BB. “When someone who barely talks says ‘Mommy, I don’t want to die … ,’” she said, her voice trailing off. “I said, ‘You’re not going to die. They do these surgeries every day.’ ”

The cause of cardiac myxomas, which typically affect the heart’s upper chamber, is largely unknown. Many are diagnosed in women between the ages of 30 and 60 and are discovered incidentally during a work-up for something else. About 10 percent are believed to result from a rare genetic disorder called Carney syndrome, but most occur randomly, as did BB’s.

Surgical removal is the recommended treatment for the tumors, which rarely recur.

Shron said she spent much of the five hours BB was in surgery watching “Downton Abbey” on her iPad in an attempt to distract herself. She said she suspected her husband was “more nervous than me because [as a doctor] he knows what can happen.” Both tried to manage their anxieties and comfort their older son.

Surgery went well. Within a day BB was moved out of the cardiac intensive care unit. Shron remembers asking why so many doctors were coming to see him and was told that the visits were prompted by the rarity of his tumor and the speed of his recovery. “They kept saying, ‘You’re defying this or doing that,’ ” she said.

But her reserves of strength were not limitless. Shron said she “had a full blown meltdown” as the family drove home from the hospital. “I looked back at him and the reality of what happened” engulfed her and she began weeping. She slept in a chair in BB’s room for two weeks until he told her, “Mom, I’m okay.”

It was only as BB was recovering that his mother learned that he had experienced months of symptoms he had rarely mentioned. A few weeks after his surgery, he told his mother he felt much better than he had in years.

BB, who will begin his junior year in high school in a few weeks, has resumed playing basketball but currently avoids contact sports and strenuous activity. Because he has had open heart surgery he will need an annual follow-up with a cardiologist for the rest of his life.

To Wernovsky, BB’s experience, which has been used as a teaching case for young doctors, is a reminder of the importance of thinking broadly when evaluating symptoms.

Shron said she continues to struggle with feelings of guilt that she wasn’t sufficiently assertive in the months before BB’s collapse, which might have led to surgery in less dire circumstances.

“I think I should have pushed more,” she said, although Wernovsky and other doctors have assured her there was nothing more she could have done. “Now if he says his toenail hurts, I’m there. He’s here — that’s the best thing.”

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