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Progress in fighting heart diseases you’re born with can be traced by this family’s story

What they’ve done about it matters, too

You hear it all the time, a life saved or improved thanks to “breakthroughs in science and medical care” or “advancements made possible by new technology.”

But what does it really mean?

What do those leaps look like? How far have they taken our understanding? How fast?

Academics can find answers in journals and lectures. For the rest of us, progress is best traced as a story, such as through the tale of the Berenfield family and their repeated battles with congenital heart disease, the kind someone is born with.

***

It’s 1969, and Len and Barbara Berenfield are living in Warren, Pennsylvania, a town of about 13,000 people in the Allegheny National Forest.

Len, Barbara and their daughter moved here a few years earlier when Len joined his family’s business. Now their household has grown; a baby boy named Greg arrives.

Doctors describe his skin as “dusky,” a sign of poor oxygen circulation. They say it should heal on its own.

It hasn’t as of the baby’s six-week checkup. So the pediatrician sends them 140 miles away to Children’s Hospital of Pittsburgh.

CHP happens to have a team of doctors in the newly certified field of pediatric cardiology. The specialists include Robert Zuberbuhler, who is so good at diagnosing heart problems in children that he later writes a textbook on it.

Zuberbuhler says Greg was born with tetralogy of Fallot, a cluster of heart defects that results in oxygen-poor blood getting pumped to the rest of the body.

Zuberbuhler says Greg also has another issue – essentially an extra artery pouring oxygen-rich blood into his lungs. For now, this helps compensate for the tetralogy of Fallot, enabling him to grow as a baby should. But once Greg is old enough to tolerate open-heart surgery, he’ll need both problems fixed.

***

Every six months, the Berenfields return to Pittsburgh so Zuberbuhler can examine Greg.

To get a good look, Zuberbuhler performs a cardiac catheterization. That means inserting a long, thin tube into a blood vessel in the boy’s arm, leg or neck. Little wonder that Greg begins fighting the trips.

One day, Zuberbuhler has a surprise. He can now get all the information he needs from outside Greg’s chest. It’s an echocardiogram, a sonogram of the heart.

***

In November 1973, the Berenfields fly to Houston to see Denton Cooley, one of the finest surgeons of his era.

Cooley believes he can correct Greg’s two issues in one operation.

He can’t.

While he masterfully resolves the tetralogy of Fallot, the challenge of also shutting off the additional blood flow proves too great. Greg goes home with congestive heart failure.

The following spring, Zuberbuhler tells the Berenfields he’s been experimenting with an arterial glue to seal small vessels, but he’s never used it to seal vessels as large as those in the heart. So far, he’s only used it on dogs. But he’s up to a 100 percent success rate.

Can he try it on Greg?

Go for it, the Berenfields say.

Two days later, Greg returns home. For the first time in his life, his heart is fully functioning.

***

A few years later, the Berenfields move to Cincinnati, another city with a terrific children’s hospital.

Better yet, Greg’s doctor becomes Samuel Kaplan, one of the world’s first pediatric cardiologists.

And best of all, they hardly need his expertise. Greg remains healthy, goes to college and joins the family business. He gets married and has a son. Then another.

Right away, the new baby, Sam, is diagnosed with tetralogy of Fallot. No longer do doctors wait years to operate. This is 1996, and surgery comes weeks later. Just like dad, he goes home with a fully functioning heart.

***

Now we jump to 2006. Greg is 37, Sam is 10, and their family is living in Durham, North Carolina.

It turns out a long-term complication of tetralogy of Fallot repair is that pulmonary valves wear out. Greg and Sam both need their pulmonary valves replaced. Within six weeks, the same surgeon operates on each at Duke Medical Center – successfully.

Sam goes on to play tennis and basketball in high school, then goes to college. Last year, while still in school, his new pulmonary valve causes problems. He happens to live near Boston, where doctors are now doing pulmonary valve replacements via catheter.

A few weeks later, Sam heads off on a study abroad program.

***

We now know that about 1 of every 2,000 babies suffers tetralogy of Fallot, and that it’s more likely in children of survivors.

We also know there are now more adults with undetected congenital birth defects than children. That’s because advancements such as fetal echocardiograms detect the problems right away and the myriad procedures to fix them.

Here’s something else worth knowing: The Berenfields haven’t just benefitted from the advancements. They’ve helped make them possible.

Their family business that began in 1914 distributing wooden barrels to package everything from pickles to petroleum evolved into a leading manufacturer of steel and fiber drums. The company’s success enabled the Berenfields to fund research and more in Pittsburgh, Cincinnati and beyond. They sold the company two years ago, providing further resources to help their philanthropic aims.

Their involvement has gone beyond financial support. Len has been a volunteer leader with my organization, the American Heart Association, since the early 1970s.

“When my son was diagnosed, I actually considered going into medical school in the hope that I could hit on the thing to fix him,” Len said. “I knew that was absurd, but his diagnosis triggered something in me. Right then and there I knew I had to get involved.”

Len’s most recent involvement was featured on NBC’s “Today” show. He’s the donor who staked the Hope and Jack Fund in honor of two children born with heart problems. The money raised will pay for AHA-guided research in this area.

As a father and grandfather, Len has had a front-row seat to witness the progress in treating heart problems among children. With awe in his voice he says what he’s seen is “just miraculous stuff.”

“What was impossible when my son was born in 1969 and was treated in ’73 is now standard today,” Len said.

And he believes what seems impossible today will be standard in a few decades.

“My family has been the beneficiary of untold advances due to the hard work of those who came before us,” he said. “Now it’s our turn to help pave the way to benefit those in need of help today and those in the future. There is no bigger joy.”

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