Three Innovations Shorten Heart Transplant Patient’s Wait Time

Stanford Medicine Children’s Health heart team gives Ellie a new heart at just the right time

It started as a simple persistent wet cough, something Eloise (Ellie) McCloskey’s mom, Aubrey, noticed before spring break of second grade, and it quickly escalated from there. After a week in the hospital and an echocardiogram and tests, the family received the news. Ellie had dilated cardiomyopathy—a disease of the heart muscle—and her heart was slowly failing.

Ellie’s family expected it to be something simple that could be fixed, because she seemed well. Yet after looking at her scans, cardiologists near her Oregon home said they were surprised she wasn’t already under intensive care.

“It came out of nowhere. Ellie was never sick, not even with colds; then suddenly she was this heart kid who took meds and had oxygen,” says Aubrey, Ellie’s mom.

From age 7 to 10, Ellie was able to enjoy life out of the hospital. By age 10, that changed. Her cardiomyopathy was advancing. Her cardiologist at Oregon Health & Science University (OHSU) consulted with the Pediatric Advanced Cardiac Therapies (PACT) program at Stanford Medicine Children’s Health to determine the best next step.

“Through our established partnership with OHSU, we had a telehealth visit with Ellie and her parents to assess her health. We determined she was very ill and she should be evaluated for heart transplant,” says David Rosenthal, MD, director of the PACT (heart failure/heart transplant) program at Stanford Medicine Children’s Health.  

The family flew to Stanford Children’s for the evaluation, and it was definitive. In order to survive, Ellie needed a heart transplant.

Getting care at Stanford Children’s meant leaving their home and living near the hospital in a hotel or at the Ronald McDonald House at Stanford for months before, during, and after the transplant. It was a big commitment for the family, with a new baby son, Lincoln, who had just turned 1 year old. Yet they are so glad they committed, because Ellie got a heart quickly, thanks to three innovations that shorted her time on the transplant wait list. 

“It is phenomenal and insane to me that all of these innovations happened and worked,” Aubrey says. “I feel in my soul if she wasn’t at Stanford Children’s, she wouldn’t be as well off as she is today.”

Combining three signature innovations for a timelier heart transplant

Child-sized hearts are hard to come by and often mean that kids in heart failure have to wait many months for a donor match. Some children, sadly, don’t survive. It’s what drove Stanford Medicine Children’s Health’s Betty Irene Moore Children’s Heart Center to begin researching ways to shorten wait times for pediatric heart transplants nearly 10 years ago. This focus—something that’s fairly unique among U.S. children’s heart centers—led to innovations that added up to getting Ellie a heart faster than the national average.

“We put in many years of work before Ellie showed up at our doorstep, and because of that we were able to intersect a number of innovations to get her to transplant quicker than usual,” Dr. Rosenthal says.

“Ellie was not tolerating her wait for a heart very well. She had a few readmissions, and she required IV therapy to keep her heart going,” says Seth Hollander, MD, director of heart transplantation at the Heart Center. “Getting her a heart earlier prevented her from deteriorating any further.”

Innovation No. 1: Hep C donor heart program 

While using a heart from a donor infected with hepatitis C, a serious liver infection, may sound risky on face value, it’s not. That’s because a reliable cure, a pill taken once a day for a few months, is now available for hepatitis C. These antiviral drugs offer a 90% to 100% cure in just 12 weeks’ time, according to the U.S. Food and Drug Administration. 

Accepting donor hearts from people infected with hepatitis C is becoming increasingly common for adults, but in pediatric programs it is still quite rare. Stanford Children’s is one of a handful of children’s hospitals across the country who do so.

“Because our heart transplant program is so large, and the children we care for are extremely high-risk, we do not want to pass up any donor heart that comes available,” Dr. Hollander says.

Recipients of donors with Hep C will likely contract the disease, but Ellie’s parents didn’t hesitate once they understood that Hep C is fully treatable.

Innovation No. 2: Donor heart matching program

Traditionally, donor hearts are matched to recipients who are very similar in height and weight. Yet, child-sized donor hearts are less common. Being able to use adult hearts in kids expands possibilities, and that’s where the donor heart matching program comes in.

John Dykes, MD, a cardiologist, and his colleagues developed a technique that compares CT scans of donor and recipient hearts, which they process with software to estimate heart volume. Because Stanford Children’s has a robust and advanced 3-D cardiac imaging center, the team can analyze hearts on the spot to quickly determine if they are a good size match, at any time of day or night, something that is uncommon at many pediatric hospitals.

“What we’re doing is essentially performing, from a size standpoint, what would be called a virtual transplant,” says Dr. Dykes.

Since heart failure makes the heart enlarge, older kids can sometimes accept adult hearts, which was true for Ellie. Since 2018, 25 kids at Stanford Children’s have received a heart due to this program and creative approach.

Innovation No. 3: Heart in a box

A technology developed by a U.S. medical manufacturer in 2021, informally called Heart in a Box, expands the amount of time a heart can be out of a human body and remain in good shape for transplant.

Rather than transporting a heart on ice, Heart in a Box keeps the heart beating during transport, using a pump that circulates oxygen and nutrients. With traditional cold preservation, a transplant must occur within four to six hours. With Heart in a Box, the window of time increases to 10 hours.

“Heart in a Box expands how far we can cast our nets to look for donors,” Dr. Rosenthal says. “Ten hours is essentially enough time to consider hearts from all across North America, rather than just neighboring states.”

Heart in a Box was created for adults, so using it in kids is unique. Stanford Children’s is likely one of a handful of hospitals worldwide that has done so. And because the heart doesn’t have to be awakened from a cold sleep, it is often healthier.

“Because the heart arrives pumping and warm, it is essentially in as good of shape as it would be in a human body,” says Elisabeth Martin, MD, the cardiothoracic surgeon who performed Ellie’s heart transplant. 

Another benefit of Heart in a Box is that it expands which hearts can be donated. Traditionally, hearts are donated due to brain death. Heart in a Box opens up the possibility of also using hearts after cardiac death, when the heart stops due to a serious problem, such as lung disease.

“With Heart in a Box, it’s possible to restart those hearts, give them time to recover, then transplant. Our future objective is to be the first in the U.S. to start a program of that nature in children,” Dr. Rosenthal adds.

The team also hopes to explore ways to use biomedical engineering to modify the Heart in a Box so that it can be adapted for baby and toddler hearts in the future.

The best birthday present ever, a donor heart

On Ellie’s birthday, while the family was out playing minigolf, they got the call: Her heart team had located a donor heart seven hours away, an option thanks to Heart in a Box. They needed to get to the hospital quickly.

“I visited Ellie the night before, and she was rock-solid and ready,” Dr. Martin says. “The transplant went smoothly, despite it being the first use of Heart in a Box for us.”

Ellie’s heart surgery took about 15 hours. Much of that time was spent checking out the donor heart, transporting the heart, making sure the heart was healthy upon arrival, and ensuring that Ellie had normal lung pressure so that she could receive the heart—something that pulmonary doctors helped her achieve prior to transplant.  

“Ellie’s heart arrived in really good shape. To transplant it, we put it to sleep with a solution, but right after the surgery, we woke it up again, so the time that it wasn’t beating was really short,” Dr. Martin says. “The shorter a heart is asleep, the better.”

Ellie’s short wait on the transplant list meant she was better able to recover. A long wait can damage other organs, like the kidneys and liver. Just two weeks after she left the hospital, her body was showing zero signs of rejection—a really good sign—and she was up and moving.

“It blew our minds how quickly she was moving around, wanting to play with her brother, Lincoln, and asking to go to the park,” Aubrey says.

Elizabeth Profita, MD, a cardiologist on the Hep C transplant team, told Ellie to go out and be a kid and do kid things. It’s just what she plans to do. She’s excited to return to school and see her friends, ride her new bike, attend summer heart camp—and go to national parks with her dad, Brandon.

When Ellie arrives home, she will receive follow-up care via joint telehealth visits between her Stanford Children’s doctors and her OHSU cardiologist, and return to Stanford Children’s after six months for a checkup.

“It’s amazing to see her at a whole new level. She’s not tired, she’s active, she’s funny, she’s feisty. She’s just being a kid,” Aubrey concludes.

Learn more about our heart care for children with heart failure/heart transplant needs >