Stories

Making Heart Transplants Possible for More Children

Our Heart Center is pushing the envelope with techniques that make heart transplants available to more children. 

Published in Connection magazine, Winter 2017

Winter Connection 2017_main storyRini Olson, now 5, was dying in a Chinese hospital when she was adopted by Andrea and Eric Olson and brought home to the United States with hopes for a heart transplant. Dr. Erin Albers (left) and transplant nurse coordinator Pam Hopkins are part of the team that guides Rini and her parents through the follow-up care that keeps her new heart healthy.

When Andrea and Eric Olson adopted their daughter, Rini, from China, she was 22 months old and needed a heart transplant. But pediatric heart centers across the United States told the Olsons, who live in Salem, Ore., that Rini was too malnourished to endure the operation. “We got ready to say goodbye,” Andrea Olson remembers. 

“Then Seattle Children’s called and said they would consider Rini for a transplant. I couldn’t stop crying — I could tell from Rini’s eyes that she didn’t want to give up.” 

Families travel from around the world to our Heart Center because, like the Olsons, they’ve been told their child is too medically complicated or too fragile to survive a transplant. We’re using innovative approaches to expand the boundaries of heart transplants and give these families hope. Our survival rates are among the nation’s best — more than 92% of our patients live for more than three years after heart transplants. 

“Sometimes you have to try something new or a child is going to die,” says Dr. Michael McMullan, who directs our transplant surgery program. “Those kids deserve a chance to live, and we believe we have the expertise and experience to be successful even when we’re doing something that hasn’t been done before.”

“I could tell from Rini’s eyes that she didn’t want to give up.”

— Andrea Olson

Meeting unique challenges

Winter Connection 2017_McMullanSeattle Children’s finds ways to give heart transplants to children once seen as too sick to live through the procedure. “If a child has a legitimate shot to survive, I think it’s our responsibility to give them a chance,” says heart surgeon Dr. Michael McMullan.

When Dr. Yuk Law came to Seattle Children’s 10 years ago, he was part of the first generation of cardiologists to specialize in caring for children with heart failure and managing the risks after a heart transplant.

“You have to keep patients’ original hearts going before the transplant, so they can stay as healthy as possible,” says Law, who directs our cardiac transplant and heart failure team. “After transplant their new hearts work quite well, but the transplant opens the door to many potential complications.” 

The immune system, for instance, recognizes that the donor heart is foreign and attacks it. This can cause the body to reject the new heart. Law’s team uses medications to suppress these attacks, and tries to stay one step ahead of rare infections and other unusual complications.

“You always have to be asking: ‘What’s the next crazy thing that might happen?’” says Law. Because Law’s team has become so skilled at helping children recover from transplants, our surgeons have more leeway to give new hearts to children not traditionally seen as good transplant candidates. 

Some of these patients are babies whose heart defects can’t be fixed with surgery. Some of them are children who have already had multiple heart surgeries. Some of them have only one functioning lung. Some have a blood type different from the heart donor.

Shorter wait times

Throughout the nation, patients wait an average of five months for a heart to become available. But children like Rini don’t have that much time. 

After she was put on the heart waitlist, Rini suffered two cardiac arrests and was placed on ECMO — a machine that supports the body when the heart and lungs can’t function or need rest. Most children in her condition only survive for a few weeks. 

“I was losing hope when Rini had been on the transplant list for 19 days,” Olson says. “Then Dr. McMullan walked in and told me they had a heart for her — I was stunned.” 

To find hearts for patients more quickly, our Heart Center is willing to work with donor hearts that other transplant centers overlook. For example, most centers won’t accept a heart that has been outside the body for more than four hours because this increases the chances it won’t function well after transplant. Rini’s heart exceeded that limit because it had to travel several hours to Seattle. 

“We don’t have hard and fast rules about which hearts we accept. Instead, we dig deep into the details about each donor and patient, to see if the benefits outweigh the risks,” Law says. “Sometimes we’re way down the priority list when a heart becomes available, but we get it after other centers pass on it.”

Uncharted territory 

Winter Connection 2017_Christa and AadenPharmacist Christa Kirk Jefferis helped save Aaden Adams’ life by figuring out how to work with a drug that’s almost never used in children. She remembers a day just before Aaden went home when he rode a tricycle through the hospital. “I couldn’t stop the tears — it was the best outcome we could have ever hoped for.”

While 6-year-old Aaden Adams was on ECMO and waiting for a transplant, his body started resisting the main drug used to prevent blood clots, opening the door to fatal complications.

The Heart Center’s pharmacist, Christa Kirk Jefferis, scrambled to figure out how to use a different drug that’s almost never used in children. 

She quickly called colleagues around the country to determine how much medication Aaden needed. The medication worked, but then Aaden’s body developed antibodies that made him far more likely to reject a donated heart. Many children with these antibodies are taken off the transplant list, but Drs. Erin Albers and Jonathan Chen refused to give up. 

“The clock was literally ticking — a new heart was on its way and we only had a couple of hours to make a game plan,” says Chen, who co-directs our Heart Center.

The team decided to completely drain Aaden’s blood before surgery and replace it with blood that didn’t have the antibodies. After transplant, Aaden’s blood ran through a filtering machine to keep it antibody-free. 

Just a few weeks later, Aaden was riding a tricycle through the Cardiac Intensive Care Unit. Now he’s in second grade in Oak Harbor. 

“We’ve done so many transplants on so many different types of children — it gives us confidence we can put our heads together and find a new path for kids like Aaden,” Chen says.

“You learn lessons that can help other patients and pretty soon … you’re expanding the boundaries of what’s possible.”

— Dr. Jonathan Chen

Advancing the field 

Winter Connection_Heart TrioOur Heart Center is one of the nation’s busiest pediatric transplant centers. Patients come from across the country to receive care from experts like (from left) Drs. Mike McMullan, Yuk Law and Jonathan Chen.

Our Heart Center team regularly publishes papers and makes presentations that explain our approaches and why they’re successful. For example, McMullan and his colleagues are finishing a paper that chronicles how children like Rini can thrive with donor hearts that stay outside the body for longer than is typically considered acceptable.

Today, Rini is a happy 5-year-old who goes to preschool and loves playing jokes on her five brothers and sisters. Stories like hers encourage other pediatric heart transplant centers to embrace practices that bring transplants to more children.

“Once you start having success with new approaches, it builds on itself,” Chen says. “You learn lessons that can help other patients and pretty soon you’re not only saving a few more kids, you’re expanding the boundaries of what’s possible.”

Longer, Healthier Lives 

winter Connection 2014_Aaden familyWhen Aaden Adams developed antibodies that made him far more likely to reject a donor heart, our team found a way to help him beat the odds. “We’re grateful for Seattle Children’s every day,” says his mother, Cheree Adams.

Heart transplants transform the lives of children whose hearts are beyond repair. But transplants also come with serious long-term health risks. We’re using research to find ways to reduce those risks and help these children lead longer, healthier lives.

One of the biggest risks is coronary artery disease, which can lead to heart failure. 

Law and his colleagues are studying why many patients who undergo transplants suffer coronary artery disease at an early age. Solving this mystery could lead to ways to keep transplanted hearts healthy.

We’re also working to find ways to help teenagers stay on medications that stop them from rejecting a donated heart. 

“It’s a really common risk for these kids — sometimes they feel healthy and think they don’t need medications anymore, and sometimes they stop taking them because they’re angry or depressed,” says Pam Hopkins, a transplant nurse coordinator.

Chen is looking for funding to develop a psychological protocol that helps identify patients who are likely to quit their medications. 

“This would help us intervene before it’s too late,” Chen says. “It could make a difference for all kids who get transplants, not just here in Seattle.” 

Your support makes it possible for us to provide groundbreaking care to children who need heart transplants. Contact Simon Pritikin to learn more.