Visit highlights enormous strides in congenital heart disease research
Fifty years ago, amid national protests over the war in Vietnam and giddy anticipation of man’s first walk on the moon, Gladys and Thomas Kaminski drove up to the gates of the National Institutes of Health, holding out hope for a miracle.
Their son Tom was just 7 and had been born with what doctors simply described as a hole in his heart. Officially, he had a complex congenital heart defect known as tetralogy of Fallot, which made it difficult for blood to flow to his lungs and get the oxygen his body needed. But all that mattered to Tom was that he was nothing like the other kids in his sleepy Lodi, New Jersey, neighborhood.
Because of his oxygen-poor blood, his fingernails and lips were blue, which made him a curiosity to his classmates. (“Are you a witch or something?” one of them once asked.) He had almost no friends, mainly because he couldn’t play ball, ride a bike, or even run. “I‘d get so winded that I could barely make it once around our small house,” Kaminski recalled recently. “It was just board games and sedentary activities like that.”
Then one day his mom and dad—a homemaker and a butcher—told him they were all going on a trip. “They didn’t want to use the word ‘operation’,” Kaminski said, “so they said, ‘You’re going to go have a correction.’”
It was 1969, and open-heart surgery was barely 20 years old—indeed, NIH was one of only a handful of places doing it. Tom’s parents knew the outcome for their son was highly uncertain, but it was the desperate gamble they were willing to take.
As Kaminski can now attest, the gamble paid off—which is why in June, almost five decades after that milestone day, he was back on campus, this time with his wife Lyn and son J.T., to celebrate the miracle “correction” he insists saved his life.
“What can I say,” he told a half-dozen or so NIH staffers, doctors, and museum curators who cheerfully rolled out the welcome mat for him. “This place gave me a new beginning, and I am so grateful.”
It was an emotional visit not just for the 57-year-old Kaminski, now a veteran helicopter traffic reporter for WCBS Radio 880 in New York City, but also for the NHLBI doctors and researchers who, after hearing his story, were reminded of the power of the life-changing work that has defined NIH for almost a century. It also highlighted just how far congenital heart research and cardiac patient care has come in the decades since 7-year-old Tom lay in the oval surgical center of the Clinical Center, fighting for his life.
how the center has changed since 1969.
Kaminski’s visit was a heady mix--part tour, testimonial, tutorial, and walk down memory lane. David Henderson, M.D., deputy director for Clinical Care at the Clinical Center, led the way, noting some of the profound ways the center had changed in 50 years, especially for children. NIH museum curator Michele Lyons served up dozens of historical photos that brought NIH’s contributions in heart research to life. NIH museum designer Hank Grasso snagged an hour-long interview for the NIH archives. And NHLBI scientists and researchers shared some of the head-spinning progress that has been made in pediatric cardiac care over the decades.
“Wow,” Kaminski muttered repeatedly as he listened to one person then another dole out a new gee-whiz fact. At one point as he strolled through the Clinical Center, he snagged a selfie in front of the relief-sculpted elevators he remembered so vividly. And when Grasso, the curator, presented a binder with an image of the renowned cardiologist who had repaired his heart—the late Andrew “Glenn” Morrow., M.D.—Kaminski’s eyes widened. “That’s him!” he exclaimed. “Holy smoke!”
A complex history
For Kaminski, why people like him got the disease he had and others didn’t was never center stage in his life, but researchers have long wrestled with the question. And for good reason: among birth defects, congenital heart defects are the most common, affecting about 1 in every 100 newborns. They also are the birth defects most responsible for infant deaths, but the rate of those deaths has fallen fivefold since the 1940s. Now, far more adults than children—2.5 million—are living with congenital heart disease.
“There’s been huge progress,” said Gail Pearson, M.D., Sc.D., associate director of NHLBI’s Division of Cardiovascular Sciences (DCVS) and also director of the division’s Adult and Pediatric Cardiac Research Program. “We’re doing a much better job of keeping infants alive—and thriving.” [For more, see “Saving the Youngest of the Young: How Decades of Research and Discovery Have Helped Kids With Congenital Heart Disease.”]
Benefiting from all those advances has been the 10 percent of congenital heart disease patients with tetralogy of Fallot—the most common condition that causes a baby to turn blue. In truth it’s not one defect, but a combination of four that affect the structure of the heart—a hole in the wall between the two lower chambers; a narrow pulmonary valve (the gateway from the heart to the lungs); a thickening of the heart muscle, which is struggling to pump blood to the lungs through that valve; and an aorta that’s not in the right position. The obstruction caused by the narrow valve and the thick muscle, explained Richard Jonas, M.D., chief of cardiac surgery at Children’s National Health System in Washington, D.C., often gets worse over time, “and that means less and less blood going to the lungs, which causes the child to become more and more blue.” To fix it, doctors typically widen or replace the pulmonary valve so the blood can flow more freely and use a patch to close the hole inside the heart.
But back in 1969, this was still relatively new surgical territory—the very first repair had only happened 15 years earlier. Just ten years before that, few were thinking about operating on the heart at all. “Outside a few battlefield repairs for something like a bayonet wound to the left ventricle, the heart was considered an organ you couldn’t touch,” Pearson said.
Then in 1944 something big happened, and notably, it started with research on congenital heart defects, and specifically tetralogy of Fallot. A team of doctors led by Alfred Blalock, M.D., at Johns Hopkins University, developed a game-changing procedure for so-called blue babies that involved using a shunt—now called the Blalock-Taussig-Thomas shunt by some—to temporarily direct blood flow to the lungs.
“I like to refer to it as the medical shot heard around the world,” Pearson said. “This is an area where congenital heart disease research led the field of cardiovascular surgery. People started coming from everywhere to Hopkins to get this procedure.”
Kaminski said his parents never talked about why he did not get the Blalock-Taussig-Thomas shunt, but Jonas speculates that his condition probably wasn’t severe enough at the start, and that doctors preferred to wait until the child was hearty enough for a complete repair.
Whatever the reason, Kaminski said he’s just glad his parents had the wherewithal to find their way to NIH when they did, given they did not have the means to afford an operation of such consequence—and expense. “All I know was that it seemed to be the last resort for me,” he said.
The journey
For Tom’s mother, it had been a long and grueling wait. Before her son was born, she already had had at least two miscarriages and, tragically, had given birth to a baby girl who died after just 3½ months—most likely, Kaminski said, of the same condition he had. This devastated his parents, and the effect on his mom was palpable: when Tom came along, she spent almost every waking hour worrying about how to keep him healthy and alive. “She didn’t want to let me out of her sight because of what happened to my sister.”
At one point when he was 5, Kaminski recalled, he got on a school bus for the first time, tripped and fell—an event so upsetting to him that his mom convinced the school district to let her home-school her fragile, underweight boy for a year.
Kaminski said it was likely his pediatrician who pointed the way to NIH, and when his parents got the green light to come, they packed up the car and hit the road. Even though his parents were “petrified” by what was about to happen, he said, they were determined to make the experience as normal and fun as possible. The first night was in a hotel, and “it was like a real trip,” Kaminski said. “My father let me stay up late and we watched tv.” Yet, in a telling moment, his mom took out an instamatic camera and began taking pictures of Tom and his father—in the bed, by the tv, smiling.
“Years later,” Kaminski recalled, “she told me she did that because she didn’t know if she was going to be able to take another picture of me alive.”
The hospital—and a wish come true
The next day the Kaminski’s checked their son into a room on 6W of the Clinical Center, and the morning of his surgery, Morrow sat at his bedside and made a pledge. He would take out the “bee” he told the boy was in his heart—and he would squish it. It was a charming, fantastical tale, but it put little Tom at ease, and to this day, Kaminski said he is in awe of how “this man of such stature” was able to talk so simply to a 7-year-old.
In short order, he said, his mind was elsewhere. A space nerd, he was completely engrossed in the international event about to happen—the launch of Apollo 11. Remarkably, he said, the staff delayed his surgery so he could watch the dramatic “10-9-8-…” blastoff. Then, with his mom assuring all would be fine, he was lifted onto a gurney—“Fuzzy,” his teddy bear in hand—and wheeled to the operating room.
When he woke up, “my mom told me that the first thing she did was grab my hand and look at my fingernails,” Kaminski said. “They were pink, not blue. And she just lost it.”
A changed life
By the time he started school in the fall, Kaminski said, “I was a different person. I was able to take gym and ride my bike. I had friends!” Best of all, he was able to meet up with the neighborhood kids he had never met and play stickball on Church Street a block away.
“It was like somebody opened up a door and said, ‘Okay, there’s the world you couldn’t be part of—go out there and be a part of it!’
Kaminski would grow up, join a band, graduate college, get married, have a son himself and become, according to his wife Lyn, one of the most empathetic and skillful caregivers a spouse, parent, and friend could have. She thinks it’s because of that transformative experience—which she insists helped her through her own: She has cystic fibrosis and two years ago had a successful double lung transplant. “He was always there, over and over,” she said. “The reason I’m here is because of him.”
The irony, Kaminski said, is that, except for his annual and then biannual visits to the campus—those lasted until 1986 as part of NIH’s clinical studies—he never thought deeply about his condition. “It did not define me,” he said. In fact, when he decided to take a job at his beloved CBS, he was not the least concerned about his health.
Giving thanks—decades later
But one day earlier this year, at the urging of his local cardiologist, he made a visit to an expert at New York Presbyterian Hospital to see if he needed to think about “upgrades” to his repair. “He asked me, ‘Who did this?’” And when I told him Dr. Andrew Morrow, he said, ‘I don’t know who he is, but he did a helluva good job.’ Then he told me I was good to go.”
That’s when he knew, Kaminski said, that it was time to come back and offer a round of regards. It was just a lucky coincidence that it had been 50 years, and that his experience coincided with that seminal moment in American history—the moon landing. That he’s marked 30 years as a helicopter reporter is not lost on him, either. “I had wanted to be an astronaut in the worst way…and while I’m not quite 250,000 miles away [in space], I’m 1,500 feet up [in the air],” he said.
Of late, he’s been reflecting on what it all means. Kaminski is widely considered the first broadcaster to report that something had happened at the World Trade Center at 8:46 the morning of September 11, 2001—his audio clips are in the 9/11 museum. And while he is reluctant to say his life was “spared” for that reason, he is certain that, without the gift of life, he never would have met his wife, spent 26 great years with her so far, helped her through her ordeal, and had a son. “Just having that chance to be his father—it’s been amazing.”
And it all started with NIH, he said.
With his wife by his side, Kaminski then shuffled through his medical records to find that critical summary line Morrow penned after his surgery. Proudly, he read it aloud: “Effective correction of this child’s cardiovascular malformation was achieved, and he should derive good benefit.”
The two laughed. “Well, he surely did,” Lyn said. “I’d say 50 years is pretty good benefit.”
