Toddler with failing heart rescued by groundbreaking surgery at Children's Hospital of Wisconsin

The boy was born with blond hair, beguiling eyes that seemed to change from blue to green to hazel, and a handful of holes in his heart —  two as large as nickels.

The holes sent too much blood flooding into BrentLee Van Haren’s lungs, leaving the infant struggling for breath. As his condition worsened, all of the known treatments failed.

At 16 months, he lay in the intensive care unit at Children’s Hospital of Wisconsin, deeply sedated, eyes closed, motionless. Though severely underweight, his body was swollen with fluid. He clung to life, a machine doing the work of his heart and lungs.

“Pretty much everybody thought he was going to die,” recalled Ronald Woods, the boy’s pediatric cardiothoracic surgeon.

During surgery a couple of weeks earlier, BrentLee’s heart had stopped — for two minutes. Woods, a 53-year-old father of two, had been in the room when the toddler had to be rescued through cardiopulmonary resuscitation. Soon afterward, the boy had been hooked to the heart-lung machine, a treatment that could only sustain him for a short while. Usually, children on such machines improve within three to seven days or they die.

BrentLee had been on the device for 12 days. No improvement. The risk of a deadly complication grew each day: a massive stroke, lethal bleeding in the brain, kidney failure.

Desperate, Woods recalls thinking: Maybe I can MacGyver a way to do a total artificial heart.

On May 20, 2017, the surgeon broke the news to the child’s frightened parents: Robert Van Haren, an out-of-work long-haul trucker, and Chelsey Meverden, a farm worker who was a few weeks pregnant with her next child.

In a calm voice, the doctor told the Oconto couple that he had an idea. It was a Hail Mary.  In order to save BrentLee, Woods planned to cut out the child’s ventricles, the two lower chambers of the heart that pump blood to the lungs and the rest of the body. He would then attach BrentLee to an artificial pumping device that rests partially outside the abdomen.

The device’s name sounds like a character from one of the Transformers movies: EXCOR. If Woods’ plan worked, EXCOR would save BrentLee’s life and sustain him until he could receive a heart transplant.

While the device has been used many times before, this would be different. EXCOR would not be asked to help the heart, its normal role. It would have to be the heart.

According to the medical literature, doctors had used the device this way only a few times with adults.

Never with a child.

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BrentLee Van Haren was born on Jan. 15, 2016. He weighed 6 pounds, 5.4 ounces and was 19½ inches long. His prenatal checkups had gone well. He seemed quite healthy.

His condition was not detected until his two-week appointment, said Chelsey Meverden. By then the parents had noticed an alarming symptom: when BrentLee inhaled, his whole abdomen and throat sucked inward.

He was diagnosed with “Swiss Cheese” Ventricular Septal Defects. The disturbing name meant he had holes in the wall separating the two pumping chambers of the heart.

The holes were causing blood to leak from the left ventricle into the right ventricle. The right ventricle pumps blood to the lungs, but BrentLee’s was pumping so much extra that it impaired his breathing.  

He breathed rapidly like a marathon runner, so rapidly he had trouble eating. Alarmed by BrentLee's symptoms, the doctor at the hospital in Oconto Falls called an ambulance to take BrentLee to St. Vincent Hospital in Green Bay.

"It was the scariest thing in my life," Chelsey said. "I went in the ambulance with him. Bob drove in the car."

BrentLee was admitted to St. Vincent where he was placed on medications to help with short-term treatment of heart failure, and to clear the excess fluid in his body. The treatments worked and BrentLee was able to feed and gain weight. After a few days, he was released. 

A change in the Van Harens' health insurance resulted in BrentLee being referred for care to the Herma Heart Institute at Children's Hospital, where he received an echocardiogram and chest X-ray.

The X-ray and scan revealed the child's lungs were saturated with fluid and he had a large circulatory problem caused by the holes. A significant amount of the blood that should have passed through the aorta was instead being diverted to the pulmonary artery.

To address these problems Woods operated on BrentLee in May 2016, installing a band around his pulmonary artery to restrict blood flow so that his lungs would not be flooded. The boy’s treatment team, which included Woods, intensive care unit doctors and cardiologists, then placed him on medications to strengthen his heart and improve urination.

For a year, BrentLee seemed to be doing well. Then he began deteriorating quickly. Chelsey noticed he was retaining fluid.  At first, his face grew swollen, then his whole body.

He was not eating, not even Nutter Butter strawberry banana yogurt, his favorite food. He was not drinking or sleeping either.

On April 20, 2017,  BrentLee’s father rushed him to Oconto Falls Memorial Hospital. A flight-for-life helicopter then airlifted him to St. Vincent Hospital in Green Bay. He was suffering from congestive heart failure, an emergency that would require one more trip to Children's Hospital.

Before the ambulance departed with BrentLee, staff allowed the parents to say goodbye.

Chelsey stood there, exhausted and afraid. It had been her first day at a new job and she'd just finished a 12-hour shift.

“I hugged and kissed him,” she said. “I told him I loved him.”

Robert, not a religious man, had only prayed a few times in his life. He prayed that night.

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For Ronald Woods, it had been a long journey from Bogota, the tiny, one gas station village in east-central Illinois where he grew up “dirt poor,” to the surgery room at Children’s Hospital where he would try to save the Van Haren’s son.

Gib Woods, his father, was a barber, juggling a second job maintaining oil pump jacks, and a third working in the insurance business. His mother, Carolyn Woods, was a beautician who ran her business out of the home.

There were no doctors among his relatives. No one in the family had ever gone to college.

Woods’ interest in medicine began one winter night when he was 5 years old. He and his father had been hunting, as they did often.

Fifty years later Woods would sit at his desk and close his eyes, recalling “a spiritual moment.”

“We’d gotten back from rabbit hunting,” he said. “We had a rabbit. It was still warm. We’d skinned it and opened the abdomen. There was steam coming out of the cavity in its abdomen.”

His father noticed the intensity of the child’s interest. You know, he said, there are doctors called surgeons who do that to people to make them feel better.

Later that same night the young boy saw one. He was watching television and a documentary came on about the legendary master of surgical technique Vivien Thomas. Thomas, who had no formal education beyond high school, became a pioneer in cardiac surgery and helped develop the technique used to treat a potentially fatal condition called “blue baby” syndrome.

Woods watched in fascination. He turned to his father.

“That’s what I want to do when I grow up.”

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The 5-year-old boy had no idea what it would take to become the 53-year-old doctor.

Getting through Eastern Illinois University and the University of Illinois College of Medicine was just the beginning for Woods.

Next came five years of general surgery training. He put in 100- to 120-hour weeks at the University of Washington Medical Center, sometimes in the trauma center dealing with gunshot wounds and car crash injuries, sometimes in the emergency room treating patients who arrived with everything from sprained ankles to heart attacks.

Most of the time he was too busy to feel the exhaustion. Every so often there would be a lull, and he’d sit down, and all at once it would catch up with him, that feeling of being tired to the bone.

Next came two years of training in general pediatric surgery at Children’s Mercy Hospital in Kansas City. His days began at 5:30 or 6 in the morning and ended 36 hours later. He would grab bits of sleep during the downtime — a couple of hours here, an hour there. Then the pager would sound.

When he wasn’t at the hospital, time was precious. He’d spend 90 minutes at the gym, working with the stationary bike, the machines, the free weights. Then home.

“And when your head hits the pillow,” he recalled, “it’s the deepest sleep you’ve ever had in your life.”  

Somehow he managed to have a life, and even to go on the occasional date. Amid the 140-hour work weeks, he met his future wife who was — what else? — a doctor in training. They were both so busy that after a few restaurant dates, they mostly just ordered takeout and spent quiet evenings together.

They did like to dance, however, and from time to time they would go to a club that played a pulsing electronic music called Trance; it became a favorite of the couple’s, ideal for keeping rhythm.

They married in 2000.

Woods went through more training at the University of Washington and Great Ormond Street Hospital, London, then started his first job at a couple of hospitals in Seattle and Tacoma.

Finally in 2011 he arrived at Children’s Hospital and the Medical College of Wisconsin. By then, he and his wife had two children, a boy and a girl. He had the kind of job he’d dreamed of, ever since that night with his father when he watched the steam rising from the rabbit’s belly.

Pediatric cardiothoracic surgeon.

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The heart surgeon works in a place few other professions know, where any given day may bring the chance to save a life.

The heart surgeon who operates on children works at a still higher level of possibility. When saving a baby, Woods said, “the number of potential years granted are much greater, potentially more than 60 years.”

Such power comes with a price.

As he lies in bed some nights, Woods feels the faith that has been placed in him. It works on his subconscious, setting in motion the “wickedly bad dream,” that haunts his sleep.

There is an old home in the middle of a dark forest. It’s just a house, but inside it, Woods must operate on his own son.

The doctor operates on the kitchen table. He has no surgical instruments. He pulls silverware from a drawer.

In the middle of the operation, the anesthesiologist who’s been assisting him leaves. Just leaves. Woods goes to find him, while his son lies on the table.

Then the scene changes. Woods is in a grassy meadow with trees. He is climbing a hill.

Coming toward him from the opposite direction, the surgeon sees hair, the top of someone’s head, the eyes, then the whole face.

It is his son. The boy walks toward him. His chest is cut open. He carries in his hands his own slowly-beating heart. His skin is blue.

“Daddy,” the boy calls. “Daddy. Daddy.”

Woods looks in his son’s eyes and what he sees is fear, loss, betrayal.

That is how the dream ends.

There are doctors who build a barrier between what goes on in the hospital and in their lives outside. Woods has never been able to do that.

“My cases,” he said, “are in my head all the time.”

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BrentLee arrived back at Children’s Hospital on April 22, 2017. When Woods examined him, almost a year after implanting the band around the child’s pulmonary artery, he saw a marked change in his heart.

The ventricles had been pumping blood vigorously. Now they pumped weakly. His skin was pale.

Never had the surgeon seen a child with the same heart defect, fitted with the pulmonary band, deteriorate so severely.

At 16 months of age, BrentLee weighed just 18 pounds. On the growth charts, his weight fell far below the 1st percentile. He was even below the one-tenth of 1 percentile mark.  

Interventional cardiologists attempted to close the holes in BrentLee’s heart. Woods came to the operating room to back up his colleagues in case complications arose.

Woods’ colleagues, experts in the use of small flexible tubes called catheters, began by positioning a metallic device that acts as a patch into one of the holes. The device is constructed so that once in place, its outer sheath can be removed, allowing the device to expand and fit snugly into the hole.  

The work was precise and delicate, requiring doctors to guide wires and catheters through smaller vessels and the tricuspid valve. The valve, which prevents pumped blood from washing back into the heart’s right atrium, is supported by a collection of delicate strings that help it function.

When navigating the wires and tubes through this network, it is all too easy to inadvertently damage the strings that support the tricuspid; that’s what happened to BrentLee during the surgery.

When the doctors finished, there was more bad news: The stress of the procedure proved too great for BrentLee’s heart. It stopped pumping.

Woods had arranged for staff to be in the room just in case something went wrong, and they flew into action, performing CPR. It took two minutes to restore heart function.

BrentLee survived.

Over the next two days, the child’s condition failed to improve. He returned to the operating room. Woods believed that short of a heart transplant, conventional medicine now offered the boy only one more chance to turn the corner and begin improving.  

The surgeon operated this time on the left side of the wall between the two ventricles. The goal was to fix the remaining holes and the damage around the tricuspid valve. Woods hoped the repairs would enable the child’s ventricles to begin pumping as they should.

Sewing together two patches, one of felt and one of Gore-Tex, Woods fashioned a composite patch a little larger than a quarter, which he used to repair some of the defects in the heart wall. The special patch was designed to cause inflammation — swelling of tissue that might help close the holes.

When the procedure was over, the surgeon could tell that it had not been enough. The child’s ventricles still functioned poorly. Although they might improve over time, Woods could not take that risk.

Following the surgery, BrentLee was placed on a heart-lung device, a treatment that was only temporary. The machine circulated the child’s blood, pumping it and infusing it with vital oxygen that would be carried to the rest of his body.   

The machine bought BrentLee time, but not much. If he did not improve within a week or so, Woods knew he would have to try something else, something outside the traditional medical playbook.

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As the days passed and BrentLee’s condition failed to progress, Woods recalled a medical paper he’d read a few years earlier. Surgeons working to save the life of an older adult had used a different machine, EXCOR, not just to assist the heart, but to replace it until a transplant could be performed.

He wondered: Would the approach work with a child, especially one so young?

The surgeon searched the medical literature and found no prior examples of a child using EXCOR as a total artificial heart. But with time running short, he could think of no other options. Woods realized he and his team would be on their own.

It was time to tell BrentLee’s parents. They would decide whether to allow doctors to attempt the new treatment.

The Van Harens listened. Chelsey, pregnant with the daughter she planned to name Ariel, later recalled the sound of the doctor’s voice as he explained the situation, but admitted she understood none of it.

“With everything that was going on, it was hard for it all to sink in,” she said. “I was really scared. I wasn’t thinking positively like I should have been.”

As for Robert, “I just remember (Woods) saying that he would have to cut (the ventricles) out and do it in a special way that had never been done before.”

He cried with Chelsey as they discussed what to do. It was not a hard decision.

It was either go forward with the procedure, Robert recalled, “or say our goodbyes now.” 

Twenty-four hours before the surgery, Woods sent a debrief to all the medical staff taking part in the operation, explaining what would happen.

About a dozen staff would participate: two operating room doctors, an anesthesiologist and resident, Woods’ first assistant and second assistant, two technicians, an operating room nurse, and two perfusionists responsible for monitoring the machines. A handful of others would observe the procedure on May 22.

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The critical day began with the boy lying in the operating room bed receiving anesthesia. A perfusionist watched over the heart-lung machine. Monitors were set up.

After an hour, Woods scrubbed in and entered. The room went quiet. The child lay sleeping on the surgical table. Woods began by reviewing each step in the surgery and checking that the room was equipped with all the necessary instruments and supplies.

Then the surgeon departed from his routine.

He told everyone in the room that what they were doing had never been done before with a child, not as far as he knew. Even so, he was confident in the plan.

Woods closed with this message:

Hang in there with me, and we’ll be fine.

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The operating room filled with the light electronic music called Trance, performed by the group Daft Punk and others. Woods chose examples of the music that included no words, no references to drugs, no foul language, just the kind of steady beat that would help to pace an operation.

There was another reason he liked the music; it reminded him of date nights, when he and his future wife went dancing.

The only sound aside from the music was Woods’ voice as he asked for each instrument.

He began by cleaning the space around the heart and removing multiple blood clots. Woods then dissected the vessels that needed to be exposed, including the aorta and pulmonary artery.

He switched BrentLee from the heart-lung machine to a cardiopulmonary bypass machine better suited to surgical procedures inside the heart.   

Then came the turning point, the moment Woods began to cut out the heart’s two pumping chambers. Removing the ventricles took only three to five minutes, but the surgeon felt the gravity of what he was doing.

“A bridge-burning maneuver,” he would call it.  Once the ventricles were out, there would be no going back.

Woods took his time, taking care not to damage structures that would be crucial to BrentLee’s total artificial heart. With the ventricles removed, he connected the child to two EXCOR machines — one for the right side of the heart, the other for the left. The right would pump blood to the lungs, the left would pump oxygen-bearing blood to the rest of the body.

The surgery had reached a critical phase. For the next 20 minutes, BrentLee’s heart would be hooked up to three machines at once: the two EXCOR machines and the cardiopulmonary bypass machine.  

The music stopped. The room was silent. A delicate choreography began.

Woods and the perfusionists, Caleb Varner and Kevin Daley, called back and forth as they slowly dialed up EXCOR and simultaneously dialed down the bypass machine. When EXCOR was doing 10% of the heart’s work; the bypass machine was at 90%.

EXCOR 20%; bypass 80%.

If either machine pumped too much or too little it could imperil BrentLee. At each step in the transition, medical staff watched the computer readouts showing the child’s blood pressure, oxygen levels, brain function and other vital signs.

EXCOR 70%; bypass 30%.

EXCOR 90%; bypass 10%.

At 100%, EXCOR became BrentLee’s heart.

All told, the preparation, anesthesia, transport and surgery had taken 12 hours.

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In the waiting room, Chelsey felt panicky; she couldn’t help herself. She kept worrying something would happen; BrentLee would not make it through the surgery.

Time slowed or seemed to.

Robert watched television. Again, he prayed.

“I was asking for him to be OK,” he recalled. “I kept telling myself, ‘He’s going to be all right. He’s a fighter.’ “

The two parents kept watching the door, anticipating the doctor’s appearance with news. 

Finally, Woods came into the waiting room. Everything had gone as planned, he said. Mom and Dad would be able to see BrentLee soon.

Robert’s chest calmed. He felt relief. They both did. Robert wept, this time with happiness.

When they went to see BrentLee, he was still sleeping.

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The boy was placed on the waiting list for a heart transplant; in 2017, the median waiting time for a heart was 180 days for BrentLee's age group. His parents were given a beeper that would sound when there was news.

Woods knew the first 48 hours after the EXCOR surgery was the time of greatest risk.

“I kept waking up every day waiting for the other shoe to drop,” he said.

BrentLee’s parents waited for the pager to sound. They wrestled with worries of their own.

“I was always afraid one of the hoses would get kinked,” Chelsey said. “The blood wouldn’t be able to flow through his body.”

It felt like the longest week in what would end up feeling like the longest year of their lives.

On July 1, Robert’s father died. He had the same birthday as BrentLee and the child called him Poppa. Robert went to the funeral, one of the few times he left Wauwatosa and Children’s Hospital.

In the meantime, BrentLee fared well on his artificial heart. He rode around in a toy car and played on a mat in the intensive care unit. He even took his first steps — all without a real heart in his chest.

On Aug. 9, almost three months after BrentLee’s EXCOR surgery, Robert and Chelsey left his room after a visit. They were going home to Oconto for the first time in a week. Before they could reach the hospital exit, their pager went off. A donor heart had been found.

BrentLee would be going into surgery. Nervous as he felt, Robert saw a sign that gave him hope. His toddler son pointed at the hospital window and said “Poppa.”

“I don’t believe in a lot of things,” Robert said, “but I believe in a life after death.”

Robert felt as if his father was watching over the boy.

Chelsey did not know what to say or think. She was excited and scared at the same time.

The transplant surgery meant another stay in the waiting room, one that began around 6 in the evening. Robert kept thinking how much he wanted to hold his son.

Transplants are complex procedures that require their own choreography. Often, different teams are procuring different organs to take to different hospitals. At each hospital, there is a team, preparing a patient and operating room for the arrival of the necessary organ.

BrentLee arrived in the operating room at Children’s ahead of time. An anesthesiologist began preparing him for surgery.

Woods, who performed the transplant, made the initial incision and readied BrentLee’s chest. This time there would be no “bridge-burning” steps until a surgeon at the donor hospital had inspected the heart and determined that it would be suitable for BrentLee.

The coordinating nurse at Children’s was in frequent contact with the team securing BrentLee’s new heart. At Children’s, Woods and his colleagues placed BrentLee on a cardiopulmonary bypass machine. They shut off the two EXCOR pumps and clamped the connections. As soon as the donor’s heart landed at the airport in Milwaukee, doctors removed the EXCOR pumps.

It took roughly an hour for Woods to sew in the new heart.

For a while the doctors kept the child on the cardiopulmonary bypass machine, then gradually weaned him off.  It took another couple of hours to administer clotting factors, platelets and other materials — all designed to ensure that the heart recipient is not experiencing excessive bleeding.

After 10 hours, the transplant was complete.

Woods told Robert and Chelsey that the surgery had gone well. The parents hugged, Robert said, recalling that he felt a mix of emotions: “relieved, scared, excited.”

For a couple of days, BrentLee was kept sedated, then he began to grow stronger. Soon the parents were taking him on short walks in the hospital hallway.

In September, one month after the transplant, Chelsey lost Ariel, the baby she had been carrying through much of her son’s hospitalization. Ariel was born at around 20 weeks, Chelsey said. “She didn’t have a skull.”

For weeks, Chelsey felt numb.

Then, on Sept. 20, BrentLee was released from Children’s; he’d been there for 151 days. Once out, it was as if he had been saving up his energy all that time.

“There was just no stopping him,” Chelsey said.

“He’s gotten a little crazier,” said Robert.

“A lot crazier,” Chelsey corrected.

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In January 2018, Woods gave a presentation on BrentLee’s treatment to the 54th annual meeting of the Society of Thoracic Surgeons.

He and his colleagues also published a paper on the procedure in The Annals of Thoracic Surgery, a medical journal.

Since BrentLee’s groundbreaking operation, Woods has attempted to repeat the procedure on four other children with failing hearts. Two were in dire condition at the time of the surgery, “too sick to recover,” Woods said.

The other two are alive today. One has received a heart transplant, the other is waiting.

Life-saving heart treatment has often required innovation, according to Robert L. Kormos,  who has been a heart surgeon for 40 years and serves as associate director of the McGowan Institute at the University of Pittsburgh Medical Center. The Jarvik-7, the first successful artificial heart, only made its debut in 1982.

“I kind of joke that in those early days we were flying the plane while we were building it,” he said.

About a decade ago, Kormos performed a similar procedure to the one that saved BrentLee’s life. His patient was an adult.

“The biggest thing that crossed my mind was that you are kind of out there on your own,” he said. “There’s no one you can turn to or ask. You move forward.”

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The blond-haired boy with the captivating eyes passed his third birthday on Jan. 15.

He has developed into a little boy who loves to play with toy trucks and jump on his trampoline and watch the computer-animated show "Chuggington."

“Unless you look under his shirt, you’d never know,” said Chelsey Van Haren during a follow-up visit at Children’s Hospital in March. “He is delayed in speech, but he’s catching up.”

As she spoke, BrentLee picked up a hospital phone from the waiting room wall.

“Hi,” he said, before his mother rushed over to put the phone back. He was already off in another direction.

“BrentLee,” she called, “you’re going to fall and crack your head open.”

Chelsey corralled her son so that a nurse could weigh and measure him. He stood a shade under 3 feet tall, and weighed 28 pounds; below the 10th percentile in both.

One of the technicians put an episode of "Chuggington" on the screen by the boy’s hospital bed to distract him while she examined his heart. The echocardiogram screen looked like deep space, illuminated by the snowy image of BrentLee’s pumping heart. Red flashes signaled blood coming into the heart, blue flashes, blood being pumped out.

“Now he’s on the growth curve, which is a miracle for us,” said Steve Kindel, the hospital’s medical director in charge of advanced heart failure and heart transplantation. “He got a lot stronger. ... His heart’s doing great. His kidneys are healthy. His liver’s healthy. He’s toddling around and he’s talking.”

His heart’s function is “essentially normal” for his age, Kindel said.

The transplanted heart won’t last forever; 25 to 30 years is considered good. Even with all the medications BrentLee takes, the body can recognize that the heart is not his own.

Eventually, his immune system will regard the organ as an invader and attack. Then doctors will need to decide if the young man is well enough for a second transplant.

“There’s a lot of reason to be hopeful, that by the time he needs one, there will be other options that will allow him to continue to survive,” Kindel said.

Cases such as BrentLee’s don’t come along very often in a career — cases in which a doctor saves a patient’s life using extraordinary measures, something not described in the vast medical literature.

The boy’s progress has filled Woods with a sense of gratitude for the patient and family.

But the surgeon also found the case humbling. It reminded him that in medicine, complications arise. The human body does not always respond to treatments the way doctors expect. The body is, in the end, its own master.

“Time and experience has taught me to temper my emotion, and avoid a premature declaration of victory,” Woods said.

BrentLee’s new beating heart does not chase away that terrible dream. Woods’ nightmare doesn’t come often.

But it does recur.