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On the prenatal ultrasound, the baby’s heart was beating so faintly that the tech struggled to see it. Testing revealed the reason: The electrical signals that normally prompt the heart’s chambers to contract weren’t getting through. She had a rare condition called congenital complete heart block — and the problem was so severe she wouldn’t be able to survive outside the womb. Fortunately, doctors thought they might have a solution: Immediately after she was born, back in October 1985, they placed a pacemaker in the baby’s chest. And it worked: She thrived.
“A miracle baby,” said the doctor managing her neonatal care. And that became Miracle Santiago’s name.
But putting in a pacemaker to save a life is only half the story. Sometimes, the device has to come out. This can happen when the pacemaker malfunctions or needs a new battery, or when the pacemaker’s leads (the parts that attach to the chambers of the heart) must be replaced because they’re malfunctioning, infected or in need of an upgrade. Removal is usually a straightforward procedure, but under some circumstances, it can be tricky or even perilous.
That was the situation Santiago faced in early 2024, nearly four decades after her birth. Her pacemaker had been replaced or updated several times over the years, and doctors had added new leads alongside her old ones. But now the system badly needed a more extensive rewiring — and her doctors were nervous. That’s how she ended up in the office of electrophysiologist Laurence Epstein, MD, of the Northwell Cardiovascular Institute.
A leader in the cardiology sub-specialty that diagnoses and treats heart rhythm disorders, Dr. Epstein is internationally known for his skill in navigating the most challenging lead extraction surgeries — indeed, doctors all over the country refer their toughest patients to him. He knew just what to do for Santiago.
The heart is the only organ with its own electrical system. It beats about 100,000 times a day, and every contraction is sparked by a natural pacemaker — a small section of specialized tissue in its upper right chamber, called the sinoatrial (SA) node. That internal pacemaker sends a signal 60 to 100 times a minute, prompting the upper chambers of the heart to contract and send blood into the lower chambers. Then those lower chambers contract as well, pumping blood out of the heart and through the body.
“In most people, this works just fine,” says Dr. Epstein. “But occasionally there are problems.” Issues with the heart’s electrical system can make the pump beat too fast or too slow or at an irregular rhythm, causing potentially life-threatening conditions. In these cases, an implanted pacemaker can provide electrical impulses to help regulate the heart’s rate and rhythm. Some 3 million Americans have one.
A typical pacemaker lasts about 12 years before its matchbox-sized battery must be replaced. At that point, because the device is hermetically sealed for durability, the whole thing has to come out. “You don’t just open the pacemaker and stuff new Duracells in. You need to put in a new device,” Dr. Epstein explains.
By her late 30s, Santiago had four leads, some decades old. At various points over the years, her doctors had discussed extracting them but had always decided against it; now, they were failing. What’s more, her old-style pacemaker didn’t closely mimic the heart’s natural pacing, and that was leading to a weakening of the muscle. A newer kind of system might be able to solve that problem.
Here’s where things can get tricky. When the pacemaker is replaced, the leads don’t always need to be swapped out, so they’re sometimes simply attached to the new device. In other cases, as had happened for Santiago, old leads may be left behind in the body, with new ones running next to them. Either option can become problematic as time goes by. Leads run through a large vein in the chest that goes into the heart, and scar tissue gradually forms between them and the walls of the blood vessel or the heart muscle. The older the leads, the more scarring.
“I joke with patients that they grow attached to their pacemaker both figuratively and literally,” Dr. Epstein says.
What’s not funny is that this can become dangerous. “The risk with that scarring is that when you remove the wire, you can take a piece of the blood vessel or a piece of the heart with you,” Dr. Epstein says. “If that happens, you can get catastrophic bleeding.”
Most people are older when they get their pacemaker, so their leads don’t have a chance to present major problems. But for a patient like Santiago, lead replacement must be addressed sooner or later. “A lot of places are so afraid to take old leads out that they just leave them in place and add more and more wires,” Dr Epstein says. But blood vessels can get clogged by the sheer number of leads. And if an older lead eventually breaks or gets infected, the heart or blood vessel can be damaged.
The pacemaker had allowed Santiago to live a full life, and at that point she’d just finished medical school. She knew better than most patients the complexity of what her doctors had in mind. But her long-time electrophysiologist told her that Dr. Epstein was widely recognized as the go-to expert for the most challenging cases — if Santiago were her own family member, the doctor said, Dr. Epstein was the one she’d call.
That was reassuring, and speaking with Dr. Epstein only made Santiago more comfortable. “I was very anxious, but I felt cared-for and I felt heard,” she says. “It made me feel really good about my decision.”
Check out the latest issue of Northwell Connections: Central for hospital news, system breakthroughs, and more stories of people like Miracle.
Over the course of his career, Dr. Epstein has performed more than 4,500 lead extractions. The oldest patient for whom he’s performed a lead extraction was a 104-year-old WWII bomber pilot.
Now he’d be calling on every bit of his accumulated know-how. “Of all the procedures that I do, this is the one where experience makes the biggest difference,” says Dr. Epstein.
The plan for Santiago was to use a minimally invasive approach. Using real-time imaging to guide him, Dr. Epstein would insert a special sheath into Santiago’s vein and advance it to the point where he needed to extricate the lead from surrounding tissue. A laser wrapped around the sheath would break up the scar tissue, etching away a hair’s-width amount at a time. “It’s a very controlled breaking-up of the scar tissue,” says Dr. Epstein, who helped develop the tool, which is now used by doctors around the world.
A cardiac surgery team would be in the room with him, just in case a problem required a sudden shift to an open-heart procedure. “We have the ability to do that in a heartbeat, literally,” he says.
But on a day early last April, at the Sandra Atlas Bass Heart Hospital at North Shore University Hospital, Santiago’s lead extraction went smoothly. In a four-hour procedure, Dr. Epstein and his team removed her four old leads and put in a new system. He screwed one of the leads into the wall between the lower chambers of the heart, connecting it directly to the organ’s natural conduction system.
“That allows us to take advantage of the normal activation of the heart,” he says. “It’s the closest thing possible to giving her back her natural pacemaker.
By a few days after her procedure, Santiago was feeling almost normal. She’ll continue to need pacemaker replacements every decade or so — a straightforward procedure now that the old, scarred leads are gone. And if pacemakers continue to improve, Dr. Epstein says, her next model may be a lead-less one. Beyond that? “A normal life,” Dr. Epstein says.
Already, Santiago has returned to her normal routine and the hard work of becoming a doctor; currently, she’s in the midst of a hospital internship in Malta, off the coast of Italy. “I like the science and the investigative part,” she says, “and taking care of people at their most vulnerable.”
And seeing more medical miracles — from the other side of the patient chart.
Millions of Americans have a pacemaker to keep their heart beating at a healthy speed and rhythm. Conditions treated with pacemakers include:
Our representatives are available to schedule your appointment Monday through Friday from 9am to 5pm.
For a Northwell ambulance, call
(833) 259-2367.