Transplant Recipient Celebrates Impressive 40-Year ‘Heart-Aversary’ in a Remarkable Year for Stanford

Woman achieves 40-year anniversary of heart transplant with the same donor heart

Elliott, Lizzy, and Jeff

Elizabeth “Lizzy” Craze lives life by miles and moments. She ticks off miles one by one while running marathons. She makes the most of every moment—avidly running, strength training, hiking, and swimming—to keep her donated heart beating strong. This year, Lizzy has reached a remarkable milestone: 40 years since her heart transplant as a toddler. Even more remarkable is that she did it with the same donor heart.

Craze family in the hospital 1984

“I had my heart transplant at Stanford in 1984. There were not a lot of hospitals in the world doing them on children at that time,” says Lizzy. She is the longest-surviving heart transplant patient at Stanford.

Lizzy was diagnosed as a toddler with endocardial fibroelastosis—a rare heart disorder that affects infants and children. It thickened her heart muscle, so that it was difficult for her heart to pump blood throughout her body.

“My family was five for five with heart failure,” Lizzy says. “My parents had three children die as toddlers before I was born, and my older brother, Andy, got sick as a teenager. He received a heart transplant at Stanford the year before I did, and when I showed signs of heart failure at 2 years old, he was my biggest cheerleader.”

It was 1984—the very start of heart transplants for children under the age of 5. Only a handful of transplant centers were trying them on small children, including Stanford. Without a heart transplant, Lizzy would not have survived. She was the youngest heart transplant recipient at Stanford at the time.

50 years of pediatric heart transplants at Stanford Children’s

The pediatric heart transplantation program at Stanford Medicine Children’s Health is one of the oldest and largest programs in the world. Lizzy’s important 2024 milestone aligns with Stanford’s own remarkable milestone of providing pediatric heart transplants for 50 years. It’s a big celebration for the Betty Irene Moore Children’s Heart Center, the Stanford Children’s Pediatric Transplant Center, and the 500+ pediatric patients who have received heart transplants over the years—a rare milestone in itself for a pediatric heart transplant center.

“The field [of heart transplant] was essentially invented here at Stanford, and we are very proud of that,” says Michael Ma, MD, division chief of pediatric heart surgery at Stanford Medicine Children’s Health’s Betty Irene Moore Children’s Heart Center. Norman Shumway, MD, a Stanford heart surgeon, performed the first successful adult heart transplant in the United States in 1968 and was one of the first Stanford surgeons to perform a heart transplant in a child, in 1974.

Lizzy’s heart transplant was performed in 1984 by Philip Oyer, MD, recently retired professor of cardiothoracic surgery at the Stanford School of Medicine. Throughout the years, Stanford Children’s gained a reputation for its impressive heart transplant outcomes and vast experience—Stanford Children’s is number one in the Western United States in pediatric heart transplant volumes and has performed the highest volume of pediatric heart transplants in California for nine straight years.

Additionally, Stanford Children’s is known for its innovative approach to changing the lives of our young patients for the better. For example, since the first successful pediatric heart transplant was performed at Stanford, the heart team has established the first combined heart failure and heart transplant program in the country—Pediatric Advanced Cardiac Therapies (PACT), found creative ways to use adult VADs/Berlin hearts in non-adult patients, discovered ways to minimize strokes in small VAD patients, and invented a highly effective donor size matching technique to expand the pool of donors, which earned the hospital the title of one of the most innovative children’s hospitals in the nation for its exceptional advances in heart transplant care.

Fast-forward 40 years

Lizzy, Stanford Medicine Children’s Health’s oldest heart transplant survivor, hasn’t wasted a moment of her life. She graduated from high school and college, got married, landed a fulfilling position in tech, and started a family.

“I definitely try to do everything I want to do and live all the life I can,” she says. “I like to say yes to wild ideas.”

One of those wild ideas was having a child of her own. Lizzy never thought it was possible, due to her family’s serious heart disease. She had accepted this as fact, but then in 2012 her Stanford doctors asked if she wanted specialized cardiovascular genetic testing to see if they could learn what caused all the heart disease in her family. She supplied a sample, and the team found the gene that caused her family’s dilated cardiomyopathy.

“At the time of testing, I wasn’t thinking about having kids; I just filed the information away. Then, my brother Andy got sick with cancer and died in 2016,” Lizzy says. “I started thinking: All of my siblings and parents are gone, but if we had our own family, we could keep the Craze line going.”

The couple considered the best way to have a baby. They chose surrogacy with Lizzy’s good friend from college. Lizzy and her husband, Jeff, supplied the egg and sperm via in vitro fertilization.

“We were able to genetically test all the embryos. Out of the four or five embryos we created, there was only one good embryo, and we got lucky,” she says. 

Today, Elliott, Lizzy’s son, is a rambunctious 4-year-old who is always on the move. He just mastered riding a two-wheeled bike. Like his parents, he loves exploring. “He always has a pocketful of rocks,” Lizzy says.

Lizzy and Jeff just celebrated their 10th wedding anniversary this year. They enjoy going on adventures together, including traveling to faraway places like Australia, Tanzania, Fiji, Norway, Zanzibar, and Japan. Each Fourth of July the family camps at a lake in California with a large group of friends. This year, Lizzy thinks Elliott is big enough to hike around the entire lake.

Same donor heart after 40 years

The fact that Lizzy hasn’t needed a new donor heart in 40 years is also a big reason to cheer. It’s extremely rare for a donated heart to last that long.

“I’m up there as far as having continuous use of the same donor heart. There are very few of us who were transplanted in the early ’80s and are still alive,” Lizzy says.

At the time of her heart transplant, she was expected to survive only five to 10 years, making her achievement downright remarkable. We applaud Lizzy for her dedication to caring for her heart by minimizing infection risk, eating well, and exercising regularly.   

“When Lizzy was transplanted, we really didn’t know how long a child with a heart transplant could survive. To see that it is 40 years later, and she is doing beautifully, is tremendously encouraging and shows optimism for the future,” says David Rosenthal, MD, director of the Pediatric Advanced Cardiac Therapies (PACT) Program and director of the Thoracic Organ Transplantation Program at Stanford Medicine Children’s Health..

Lizzy is still getting care at Stanford for her heart, after all these years. When she became a young adult, she transitioned easily to adult heart care at Stanford Health Care. It’s one of the reasons her family lives nearby in Menlo Park. At each checkup, she hears that her donor heart is beating strong.

Lizzy has planned a big blowout party for her 40th heart anniversary in October.   

“We rented a suite at a San Francisco Giants game and invited a bunch of family and friends—even our East Coast relatives are coming,” she says.

Living large, running strong

Lizzy at the San Francisco half marathon

Lizzy has completed 35 half marathons and six full marathons to date. Each one celebrates the chance of a full life after heart transplant. She’s currently training for a marathon in Southern California to commemorate her 40-year heart anniversary. “I made a shirt that says, ‘I had a change of heart at Stanford hospital,’ on the front, and ‘Heart transplant recipient 1984’ on the back. I wear it during marathons, and I overhear bystanders remarking on it,” she says.

Lizzy is grateful for her survival and her sturdy heart.

“I got lucky. There was some magic combo during my heart transplant that worked out for me. Hopefully, this heart will keep me going for another 40+ years.”

Learn more about heart transplantation at Stanford Medicine Children’s Health >

Authors

One Response to “Transplant Recipient Celebrates Impressive 40-Year ‘Heart-Aversary’ in a Remarkable Year for Stanford”

  1. Sue zweig

    Was honored to care for Elizabeth after her transplant and be friends with her family. Such a great story and great to know she has thrived.
    Keep up the great work Litzy and Stanford. Working in the Cardiovascular ICU was the best job I ever had.

    Reply

Leave a Reply

  • (will not be published)