Patient StoryDec | 2 | 2021
Erin’s story: Kindness and inclusive care help researcher flourish after childhood liver transplant
From the age of 9 months, Erin Walker, PhD, got sick more often and had much less energy than her twin sister and other siblings. She was also much shorter than her identical twin. After multiple doctor’s visits, tests and scans, Erin’s family learned that their daughter had primary sclerosing cholangitis (PSC), a condition that causes scarring in the biliary channels of the liver and can eventually lead to cirrhosis.
The best course of treatment for Erin, who grew up in Ottawa in Ontario, Canada, was a liver transplant. Because of how sick she was - and given that liver transplantation in children was not common at the time - Erin was added to not one, not two, but three organ donation lists.
Shortly after she turned 4, Walker had a successful liver transplant at MassGeneral Hospital for Children (MGHfC). Ronald Kleinman, MD, Physician-in-Chief at MGHfC, was on her care team for the transplant in 1986 when he was a provider with Pediatric Gastroenterology and Nutrition at MGHfC.
“What I remember most is that Dr. Kleinman was such a kind man,” said Erin, who is now 39 and lives in London, UK. “He exudes warmth and attentiveness. He represented safety and security to me, and I trusted him to do what was best for me.”
With liver transplantation in children being so new at the time, Erin’s parents were nervous about the transplant. “As parents, my wife and I were terrified of the entire process,” said her father, Garry, of Ottawa, Ontario. “Dr. Kleinman turned our fears into hope and joy. We have never met a kinder, gentler man, and we will be forever in his debt.”
Before and after a transplant, it is common for patients to have multiple appointments. At every visit, Kleinman made sure Erin’s voice, desires and opinions were part of the discussion.
“He talked to both me and my parents, not just to my parents about me while I was in the room,” said Erin. “He genuinely cared and was invested in my wellbeing. He wanted me to be well and be healthy.”
From start to finish, Kleinman ensured Erin and her family felt supported and cared for. “The doctor who referred us to him said Dr. Kleinman was an angel,” said Erin’s mother, Jan Gordon, also of Ottawa, Ontario. “Once we met Dr. Kleinman, we understood why. He shepherded us through many dark and scary days, always arriving with sunshine and hope.”
Over time, Erin caught up to her sister in terms of physical and cognitive development and went on to graduate from secondary school and attend college.
“It was a privilege to take care of Erin and to spend time with her and her family when she first came to us with a failing liver and in need of a transplant,” said Kleinman. “Even at that age, her humor, intelligence and remarkable resiliency were very obvious.”
Like all transplants, Erin’s new liver was a treatment and not a cure. When she was 20, Erin had another liver transplant at a hospital in London, Ontario, Canada.
“He cared for me even from afar and well beyond the age of 4,” said Erin, who is now preparing for a third transplant. Her experience as a liver transplant patient also inspired her to pursue a career in medical research and population health. Her PhD dissertation focused on improving the quality of life for liver transplant patients like herself. She now works as the patient insight and involvement lead at UCLPartners, a London-based academic health science center dedicated to improving population health for the NHS through research, innovation and education efforts.
“The life of a transplant patient is the only life I’ve ever known. I am so grateful that I was so young when my first transplant happened and that Dr. Kleinman helped me have a happy childhood because of how much he cared,” she said.
What is even more rewarding, said Kleinman, is to see how much Erin has grown. “She pursued an advanced degree and dedicated herself to a research career in health care to help others with similar, complex and potentially debilitating illnesses,” said Kleinman. “I can see that the twinkle in her eyes that I first saw when she was a young child is still there, and I’m very glad to have played a small part in what she’s achieved since then.”
Photos courtesy of Erin Walker.