The finding: Liver disease severity before transplant may shape outcomes
Racial and ethnic disparities in pediatric liver transplantation are often discussed as a waitlist access issue: Which children reach the waitlist, and how quickly? A new study from specialists in liver disease and transplantation at Children's Health℠, published in Pediatric Transplantation, adds another layer: Racial disparities may contribute to differences in disease severity before transplant, which can shape post-transplant outcomes.
The study found no significant differences in waitlist access across racial and ethnic groups. However, it did reveal that non-Hispanic Black children had lower one-year survival rates and a higher risk of mortality than non-Hispanic White children.
"Our findings hint at the importance of pre-transplant care. How sick these children are when they go into transplant plays a large role in their post-op recovery," says Sindhu Pandurangi, M.D., Pediatric Hepatologist at Children’s Health and Assistant Professor at UT Southwestern.
Why it matters: Sicker children face higher post-transplant risks
The study drew on United Network for Organ Sharing (UNOS) data from more than 3,500 pediatric liver transplants performed between 2010 and 2024 due to cholestatic liver disease, which remains the leading indication for pediatric liver transplant.
The study grew out of clinical observations and conversations about how cholestatic liver disease is detected in infants. Some non-Hispanic Black families described jaundice being recognized later in their infants. This observation raised the concern that diagnosis and referral to transplant may occur after liver disease has progressed.
The study showed that several markers suggested that disease severity at transplant may contribute to outcome differences. For example, non-Hispanic Black and Hispanic children had higher models for end-stage liver disease (MELD) and pediatric end-stage liver disease (PELD) scores and bilirubin levels at liver transplant listing.
Children who are sicker at transplant face higher perioperative and early post-transplant risk. Because the study was retrospective, it could not determine exactly where delays in care occurred. The severity patterns suggest that earlier diagnosis, referral and pre-transplant optimization may be important opportunities to improve outcomes.
“Once they’re listed, access to transplant looks similar. But the question is whether they’re coming in sicker because of delays earlier in their care,” says Ahmad Anouti, M.D., Pediatric Gastroenterology Fellow at UT Southwestern.
The clinical opportunity: Earlier recognition and referral
For referring providers, earlier recognition and referral provide the most actionable opportunities to improve transplant readiness. Persistent jaundice beyond two weeks of life is a key early sign of cholestatic liver disease. However, it may be harder to recognize in infants with darker skin tones.
Fractionated bilirubin testing at the two-week visit can help identify cholestatic liver disease earlier, especially when jaundice is difficult to assess visually. The American Academy of Pediatrics also recommends examining the sclera, mucous membranes and oral cavity, particularly when skin findings are harder to assess.
These low-cost, high-yield interventions, paired with prompt referral to pediatric hepatology, may help address the severity gap identified in the study.
“We can pick up these diseases very early,” Dr. Pandurangi says. “The key is not waiting: If there’s concern, refer. Earlier evaluation can make a meaningful difference.”
Specialists at Children’s Health are also advancing earlier detection of cholestatic disorders of infancy, especially biliary atresia. The Biliary Atresia Program uses an MMP-7 blood test to help identify infants who may need urgent evaluation, with results available faster than traditional testing. Children’s Health and UT Southwestern researchers are also studying an indocyanine green stool test that may further speed biliary atresia diagnosis.
Specialized transplant resources can support readiness
Once a child reaches transplant evaluation, Children’s Health offers resources that can help expand options and reduce perioperative risk, including:
Machine perfusion to help preserve graft quality
Split-graft expertise to support organ size-matching for infants and small children
Multidisciplinary transplant planning to evaluate each child’s clinical needs, donor options and timing
Together, these capabilities support individualized transplant planning for children with advanced disease, limited donor options or size-matching needs.
A multidisciplinary model to address pediatric liver transplant disparities
At Children’s Health, addressing these disparities begins as soon as a child is referred for liver disease or transplant evaluation. ThePediatric Liver Disease Center andSolid Organ Transplant Program bring together a fully integrated, multidisciplinary team, including:
Hepatologists, gastroenterologists and transplant surgeons
Nurses and care coordinators
Pharmacists, psychologists and dietitians
Social workers and financial counselors
Together, the team evaluates each child’s clinical, social and logistical needs, including social determinants of health that may affect access, readiness and outcomes. Children’s Health screens patient families annually for these factors and connects them with resources when needs are identified.
By combining data-driven research with coordinated care, Children’s Health is working to improve early detection, support timely referral and help more children reach transplant in the strongest possible clinical position.
