Transplant recipient Sara Kathryn Smith — the new medical director of pediatric liver transplantation — has a hard-won perspective on what it means to live with advanced liver disease.
Sara Kathryn Smith provides hope to young patients and their families in a way that few doctors can. As the new medical director for pediatric liver transplantation at Johns Hopkins Children’s Center, she not only reassures parents with her confident diagnoses and wealth of experience as a pediatric gastroenterologist — she is a living testament to what a liver transplant recipient can achieve.
Smith’s own tumultuous medical odyssey unfolded over several years, beginning unexpectedly at age 17. Her personal journey has given her a hard-won perspective on what it means for young patients and their families to live through the ups and downs of advanced liver disease: the anxious wait on the transplant list, the hope that a new liver can bring and the disappointment when a transplant doesn’t take.
“Being a transplant recipient gives Kathryn this unique insight on what it’s like to go through a transplant and be in the situation where your organs have failed, and you don’t know what’s going to come next — as well as the overwhelming responsibility of living with a transplant,” says Elizabeth King, the surgical director of pediatric transplant at Johns Hopkins Children’s Center. “It’s so rare to be able to relate to patients in that way.”
‘We Can Handle It!’
Smith’s liver troubles began one evening in her junior year of high school, shortly after she returned home from a science competition. She had pain in her stomach and threw up blood the following morning. Her mother took her to the emergency department. There, doctors determined that her vomiting was caused by bleeding esophageal varices (enlarged veins in the esophagus), which usually develop when blood flow to the liver is blocked. The underlying diagnosis was cirrhosis, a chronic disease that leads to scarring of the liver. In Smith’s case, the cirrhosis was caused by autoimmune hepatitis, an inflammatory liver disease that affects roughly 3 in 100,000 children. To treat her symptoms, surgeons inserted a shunt that allowed blood to flow past the scarring in her liver.
For a while, the treatment worked. Smith felt well enough to move from her hometown of Augusta to Atlanta to study biology at Georgia Tech. But a few months into her freshman year, her shunt developed a blockage, and her doctors determined she would need a liver transplant. While she waited on the liver transplant list, Smith returned to her college studies. In the fall of her sophomore year, she was excited to learn that she would receive that new liver. But her relief was short-lived. The transplant failed due to a hepatic artery thrombosis — a fairly common complication wherein a clot forms in the artery that provides blood to the new organ.
Four weeks later, Smith went into surgery at Emory University Hospital in Atlanta for her second liver transplant. She expected to come out of anesthesia later that day with a liver that finally worked. Instead, she awoke from a medically induced coma two months later at Jackson Memorial Hospital in Miami, Florida. “I had no idea where I was. I woke up with a tracheotomy, so I couldn’t talk. And then my mom told me, ‘You are going to need another transplant,’” she remembers.
Smith’s second transplant had also failed, due to a rare thrombosis in her superior mesenteric artery, which supplies blood and nutrients to the intestines. The emergency measures taken to keep her alive had damaged multiple organs, and she needed another major operation to survive. This time, surgeons gave Smith a new stomach, pancreas, kidney, small intestine and her third donor liver.
“It was very tough. You learn to appreciate the little things, and it gives you a completely different view,” remembers Smith, who spent nine months in the intensive care unit relearning how to walk, talk and feed herself after her final operation. “I was definitely scared, but my mom would take it away by insisting there was no reason to be afraid. She was so positive. She would always say: ‘You can do that! We can handle it!’”
During her lengthy recovery, Smith formed a deep bond with her doctors, surgeons and nurses at Jackson Memorial Hospital, several of whom helped guide her on her path to a medical career. Many people assume that Smith’s career trajectory was inspired by her own experience of being a patient, but she insists that’s not the case. The daughter of a chemist and a science teacher, she says her heart was set on becoming a doctor since she was 5 years old. “I never entertained any other idea,” she says. “I was determined to be a doctor no matter what.”
A New Lease on Life
After her organ transplants, it was unclear whether Smith would be able to realize her long-held dream of becoming a physician. To ensure a patient’s immune system doesn’t attack their donor organ, transplant recipients must take immunosuppressive drugs for the rest of their lives. Over time, these medications can lead to a range of medical issues, including anemia, blood clots, kidney damage, high blood pressure, diabetes and weakened bones. Patients fortunate enough to avoid these side effects are still left with a compromised immune system, which is especially risky for medical professionals who may be exposed to infectious diseases at work.
When Smith got to medical school, she considered studying radiology or pathology, so she could minimize her exposure to sick patients. But she soon realized that she was too outgoing to spend her days working in a lab analyzing X-rays or cell cultures. Then, during her second-year rotation in pediatrics at the Medical College of Georgia, she unexpectedly found her calling in pediatrics while working in a small practice in Aiken, South Carolina.
“It was my last rotation, and about two weeks in, I realized how much I enjoyed it. It came as a total surprise to me, because I never considered myself a kid person before that,” she says.
Smith asked her surgeon in Miami what he thought about her pursuing a career that required her to be around sick children, and he gave her his blessing. However, not everyone was as supportive. “People said, ‘How are you going to be a doctor if you’re immunosuppressed?’ Or they told me to choose an easy pediatrics job and live in the countryside. But I felt like I had a whole new lease on life after my transplants. I wanted to figure out for myself what I could handle,” she says.
As it turned out, she could handle a lot. In 2009, Smith returned to the University of Miami to complete her residency at Jackson Memorial Hospital, followed by a pediatric fellowship in gastroenterology at the University of California San Diego. After a second fellowship in pediatric transplant hepatology at the University of California San Francisco (UCSF), she was hired as an attending physician at the university’s Benioff Children’s Hospital in 2016.
Then, in late 2020, she accepted a position back at the University of Miami. Although the main surgeon who performed her transplants had retired, she got the chance to work with some of the same clinicians who had treated her two decades earlier, including a senior surgeon who was a brand-new fellow when Smith was a patient in 1999. “He was like a brother to me. It was this full-circle experience,” she says. “He took care of me when I was so sick, and then there we were, working side by side.”
As fitting as it felt to be back in Miami, the move was short-lived.
An Eye on Expansion
Douglas Mogul, Johns Hopkins’ former medical director of pediatric liver transplantation, reached out to Smith last year about interviewing for his position at Johns Hopkins Children’s Center. He was leaving the hospital and looking for someone to continue his legacy, as well as the legacy of his mentor, Kathleen Schwarz, who was the Children’s Center’s former division chief of pediatric gastroenterology and the first director for pediatric liver transplants. Part of their vision was to grow the program and make Johns Hopkins one of the country’s top destinations for pediatric liver transplants.
As someone who had worked at UCSF and the University of Miami — both high volume pediatric transplant centers — Smith seemed ideal for the job. After conducting a national search and reviewing resumes from a number of qualified doctors, the team at the Children’s Center agreed that Smith was indeed the perfect fit.
“I wasn’t planning on moving, but all the stars aligned,” says Smith, who was in a long-distance relationship with her now-fiancé — a man she met in high school who happened to live in Baltimore. “The opportunity to work at Johns Hopkins was too good to be true. The people here are fantastic, and I always wanted to be able to build a program. Sometimes I feel like I have to pinch myself,” she says.
Since starting at Johns Hopkins Children’s Center earlier this year, Smith has been working to expand the pediatric liver transplantation program, and her efforts are already beginning to pay off. The Children’s Center is on track to perform 12 transplants in 2022 — more than double the number that the hospital has traditionally performed. Many of those patients have been referred by Smith’s peers at other hospitals, who often turn to her for advice on whether their patients need liver transplants.
“Kathryn has the ability to hear about a kid with liver disease and know immediately what they need,” says King, one of the Children’s Center’s top transplant surgeons, who works closely with Smith. “She knows when to bring them here and plug them into our system in a way that’s really impressive. Our program is benefiting from that level of expertise and confidence.”
To handle the increased volume of transplants, Smith is planning to hire more doctors in the months ahead. “Hopkins’ reputation will help attract patients, but we also have to assemble a team that’s motivated,” she says. “We’re in a competitive region with many top hospitals, so it’s important to set ourselves apart in some way.”
One area where the Children’s Center’s liver transplant program shines is research. Young patients have the opportunity to participate in a number of cutting-edge clinical trials, including the testing of novel drugs designed to treat cholestatic liver diseases, which can lead to malnutrition, pruritus (itchy skin) and progressive liver damage. Many of the new treatments available at Johns Hopkins have the potential to delay the progression of liver diseases and could ultimately change the landscape of treatment for children.
Smith’s own research focuses on long-term outcomes for pediatric liver transplant recipients and finding ways to improve their quality of life. “The number one question I get from people is, ‘Why did you do so well? Why was your transplant so successful?’” says Smith, who, with the exception of partial hearing loss caused by her medications, has thrived since her transplants. “Why do some patients do so well, and others do not? That’s part of what I’m trying to figure out.”
In addition to the latest treatments and technologies, Johns Hopkins Children’s Center boasts state-of-the-art facilities for performing liver transplants and treating any postoperative complications that may arise, such as the arterial thromboses that Smith experienced.
It’s also a top-ranked program for living donor transplants, in which a healthy person donates a piece of his or her liver to someone with liver disease. Living donor transplants are especially helpful for treating infants and toddlers, as they are less likely to find a size-matched liver from a deceased donor, partly because parents must grant permission for their child’s organs to be donated. Due to the liver’s unique ability to regenerate, a piece of adult liver that is transplanted in a child can grow to full size, and the donor’s liver will also regrow.
A Rare Kind of Doctor
Another key strength of Johns Hopkins’ pediatric liver transplant program is its level of personalized care, which colleagues say has been strengthened since Smith came on board.
“Without a doubt, she can empathize more than anybody with what children and families are going through,” says Maria Oliva-Hemker, chief of the Division of Pediatric Gastroenterology, Hepatology and Nutrition at Johns Hopkins Children’s Center. “She has been a great colleague to work with. Her enthusiasm and her passion for what she does is infectious.”
King says she realized Smith was special earlier this year, when she found her at the bedside of a very sick infant at 2 a.m. “I went to check on the patient, and Kathryn was already there, reassuring this little baby’s mom and comforting the baby,” remembers King. “For a medical director to be there at that hour was so surprising. It let me know, as a surgeon, that this is someone I can rely on to support me and our patients without limits. That kind of doctor is rare.”
Smith says she likes to treat her patients with the same can-do attitude that she learned from her mother. “I’m not a cuddly type of doctor. I’m reassuring, but I have a lot of calm confidence,” she explains. “I know from being a patient that it’s important to be direct, while also providing hope.”
For Smith, saving a child’s life and seeing the gratitude from their parents is one of the best feelings in the world. “When you give a dying baby a new liver, and a couple days later they are looking at you and smiling — it’s overwhelming. The ability to successfully perform these transplants is a miracle of modern medicine. I love being part of it.”