Rini 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 Seattle Children’s Heart Center because, like the Olsons, they’ve been told their child is too medically complicated or too fragile to survive a transplant. Seattle Children’s is using innovative approaches to expand the boundaries of heart transplants and give these families hope. The center’s survival rates are among the nation’s best — more than 92% of 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 the 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.”

Meeting unique challenges

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 the 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, 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.

Seattle 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.

“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, Seattle Children’s 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

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.

Pharmacist 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.”

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 the 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.

Advancing the field

The Heart Center team regularly publishes papers and makes presentations that explain its’ 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.”