Parents share heartfelt message for National Donate Life Month
Life was rolling right along for Lindsay Yuh and Mason Hancock from Granite Bay, California. The two were excelling at their careers—Yuh was getting her medical practice up and running, and Hancock was enjoying his work as a bridge design engineer. They had a healthy, happy toddler, Lucas, and they had just welcomed their second child, Maya, into their lives. Then, life as they knew it stopped short.
“We noticed Maya’s color was a little off at her 2-month well-child visit. Her doctor said, ‘It’s probably just breast milk jaundice, but let’s do a blood draw just in case,’” says Yuh.
Maya was diagnosed with biliary atresia, a rare liver disease that affects tubes in the liver called bile ducts. It occurs in just 1 in every 8,000 to 18,000 infants in the United States every year, according to the American Liver Foundation. Without functioning bile ducts, bile—a fluid that helps with digestion—can’t drain from the liver. Instead, it builds up, becomes toxic to the liver, and causes damage.
“Biliary atresia is the main reason for liver transplants in infants and the top reason that children receive liver transplants at Stanford Children’s Health. It is so hard to recognize because newborn jaundice—a yellowing of the skin and eyes—is so common. That’s why jaundice that occurs after two weeks of life should always be investigated,” says Carlos Esquivel, MD, PhD, chief of the Division of Transplantation. He’s also president of the International Pediatric Transplant Association (IPTA) and has greatly contributed to advances in pediatric liver transplantation through the years.
Within four days of her diagnosis, Maya underwent a surgery called the Kasai procedure at her local hospital. A part of her intestine was brought up to the hilum of the liver (where the bile duct is supposed to be) to create a channel for bile to escape. The Kasai is usually the first treatment for babies with biliary atresia.
“We were told that a third of the time the Kasai doesn’t work, a third of the time it works until early childhood, and a third of the time it works until adulthood,” Yuh says.
In the first few months after the Kasai procedure, Maya seemed better on and off, but then she started getting fussy and uninterested in eating. Jaundice was making her itchy and tingeing her skin and eyes yellow—a sign that bilirubin, a substance that’s formed when the liver cannot handle the pigment from the breakdown of red blood cells, was building up. Maya’s bilirubin was tracked to measure how successfully her Kasai was working to drain her liver. Soon, her levels were back at where they had started before the surgery.
Putting Maya on the wait list for liver transplant
“We got a referral to Stanford Children’s Health, and we met with the liver transplant team virtually in early December 2020. Maya then underwent a complete evaluation by a transplant multidisciplinary team. A week later she was put on the donor waitlist,” Yuh adds.
Given her severe illness, Maya’s calculated pediatric end-stage liver disease (PELD) score put her high on the transplant wait list. The Transplant Center worked to optimize her health before transplant. As with most children with biliary atresia, she had complications, so it took a dedicated multidisciplinary transplant team to manage her care and keep her strong while she awaited a donor liver. At Lucile Packard Children’s Hospital Stanford, the core of Stanford Children’s Health, families are assigned a pretransplant coordinator—a nurse practitioner who becomes their go-to person for everything. Having someone for families to call with questions at any time is something that sets the hospital apart.
Within a few weeks, Yuh and Hancock received their first call that a donor liver had been found, but Maya was sick with a cold, and a decision was made to postpone. Less than two weeks later, they got another call.
“It was crazy fast. We were not expecting to hear that a liver was available so soon. We had a living donor lined up, but then a deceased donor’s family came through. We were so overjoyed with the news,” Yuh says.
Livers for transplantation are from either a living donor or a deceased donor. Maya was lucky in that her family had a generous friend who was willing to undergo living donation if it meant saving Maya’s life. As a living donor, the friend would have undergone a minimally invasive surgery where a portion of the liver would have been removed. Remarkably, the liver regenerates itself after six to eight weeks.
The Pediatric Liver Transplant Program is innovative in finding ways to increase access to donated livers, such as splitting a large liver between two patients. The program is one of a handful in the nation to offer adult-to-child living donor transplantation using 3-D minimally invasive laparoscopic surgery. It’s also a national leader in performing successful ABO incompatible liver transplants.
“If a transplant becomes indicated for a child, we work hard to get them to transplant in a timely manner, as that greatly improves their outcomes. When possible, we take a parallel approach by identifying both a living donor and a deceased donor, like we did with Maya,” says Leina Alrabadi, MD, a pediatric transplant hepatologist with Stanford Children’s Health’s Pediatric Gastroenterology, Hepatology and Nutrition services.
The call that a liver had been found was timely, because the family was becoming emotionally and physically exhausted. No one in the house was getting much sleep. Maya wasn’t eating well, and she was often fussy. Lucas, of course, also needed attention. To manage it all, Hancock paused his career and became a full-time caregiver. Yuh remembers writing in her journal that the gift of the donation came at just the right time, given the amount of stress they were feeling.
“It’s overwhelming just to have a baby, let alone have a baby facing a liver transplant. The parents were amazing, and Maya was incredibly resilient,” Dr. Esquivel adds.
A successful transplant surgery
Maya’s transplant surgery went without a hitch on Jan. 17, 2021. The donated liver fit perfectly, and the surgery was quicker than the family expected.
“Mason and I both remarked on how her appearance changed after surgery. Her skin looked good and her eyes were clear for the first time, and she began to smile again. During recovery she had a voracious appetite. All of a sudden she was really interested in food! She was like a completely different child,” Yuh says.
According to Dr. Esquivel, who performed Maya’s surgery and has performed liver transplants on nearly 1,000 children, her jaundice disappearing so quickly was an immediate sign that the transplant was successful. Her new liver is expected to last her lifetime.
“We love Stanford Children’s Health. Everything was top-notch, and we felt really taken care of by everyone on the liver transplant team—the transplant surgeons, the hepatologists, the pharmacists, the social workers, the transplant coordinator, and the nurses—they are all amazing,” Yuh says. “As a doctor myself, I always wondered how someone without a medical background could handle this, but they make it as easy as can be.”
Leaving her transplant in the rearview mirror
Maya was sent home with a feeding tube, which provided supplemental calories. Her appetite remained strong, and her family was thrilled to watch her feisty personality bloom.
Today, the toddler is right on track developmentally. She’s bright and beautiful, always eager to greet everyone and engage them in whatever she’s doing. She’s curious and happy to help. One of her favorite activities is building bridges out of blocks with her dad, the engineer.
“We are still discovering who Maya is posttransplant. Most of the time we don’t think about what we’ve been through and we simply enjoy her. She’s doing really great,” Yuh says.
The family is thrilled that life is back to a normal flow. They have regular check-ups with Dr. Alrabadi at the Pediatric Liver Transplant Program’s outreach center in San Francisco—a shorter drive for the family than Palo Alto. The program, known nationwide for performing highly complex liver transplants with exceptional results, offers 10 outreach centers in six states, along with telehealth visits, so that it can provide lifelong care to transplant patients like Maya.
One family’s loss is another family’s life
Yuh and Hancock have endless words of thanks and tears of gratitude for the family that donated their child’s liver. Yuh chokes up when talking about the incredible gift they gave her family, and she marvels at how doctors can take a donated organ from a deceased person and put it into a living child and watch it come to life.
“We talk to the donor family in our minds all of the time, and we consider how their grief became our life. We want them to know how amazing Maya is and to know that we could not have done it without them,“ Yuh concludes. “We are forever grateful to them, and to Stanford Children’s Health.”
Stanford Children’s Health is extremely thankful to donors for their life-changing gifts. To learn more about living donation, please contact the Living Donor coordinator at (650) 724-5672.