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Study Reveals Challenges in Cardiac Transplantation Referrals for High-Risk Infants

Study Reveals Challenges in Cardiac Transplantation Referrals for High-Risk Infants 1024 670 JoAnna Pendergrass, DVM

Findings from a recent retrospective study demonstrate challenges and inequities in cardiac transplantation referrals for infants with single ventricle congenital heart disease, suggesting the need to improve access to transplantation and the timing and rate of transplantation referral.

 

A retrospective study led by Lydia K. Wright, MD, pediatric cardiologist at Nationwide Children’s Hospital, examined outcomes of transplant referral and death without transplant referral in the first year of life for 2,960 infants who received stage 1 palliation (S1P) from June 2016 to December 2022. S1P is the first of three surgical stages for infants with HLHS that involves establishing unobstructed systemic circulation.

Results were published in Pediatric Cardiology.

Infants with HLHS have higher survival rates compared to 30 years ago but still face significant health challenges. “These infants are at higher risk for feeding difficulties, neurologic complications and neurodevelopmental challenges,” says Dr. Wright.

Little research currently exists on transplantation access for these patients, in part because the total number of infants with HLHS is very small, requiring the need for multicenter databases to gather sufficient data, she explains.

The research team collected data from the National Pediatric Cardiology Quality Improvement Collaborative registry, a database of infants with HLHS or similar single ventricle lesions who require S1P.

Data collected included prenatal/fetal factors, non-cardiac conditions and cardiac risk factors including significant tricuspid regurgitation and ventricular dysfunction. The infants were assigned to one of five Child Opportunity Index (COI) quintiles based on their ZIP code at birth, ranging from ‘Very Low’ (<20th percentile) to ‘Very High’ (>80th percentile).

Data analysis revealed that the frequency of cardiac risk factors was similar across the quintiles. However, infants in the lower quintiles were more likely to have lower birth weights and be on public insurance. The researchers found that transplantation referrals for infants with HLHS and similar single ventricle lesions did not appear to be based on race, ethnicity or neighborhood socioeconomic status.

“We did not observe inequitable transplant referral based on race, ethnicity or COI quintile during the highly monitored interstage period between S1P and stage 2 palliation (S2P),” says Dr. Wright. Similarly, no inequities in death without transplant referral after S1P were observed based on these demographic factors.

She notes that non-cardiac risk factors, particularly prematurity and low birth weight, were more prevalent in minority infants and those in the lower COI quintiles.

“These factors increase the risk of death but would likely not be ameliorated by earlier transplant referral,” explains Dr. Wright.

The strongest predictor of transplant referral and death without transplant referral was significant tricuspid regurgitation. However, an inequity was observed: no Black, Asian or Multiracial infants with this condition before S1P were listed for transplant compared to 15% of White infants, after controlling for other risk factors.

The research team noted several future research needs: (1) determine the ideal referral rate and timing to minimize mortality in infants with HLHS, (2) identify the ideal transplant candidates and (3) examine the disparities in which infants with significant tricuspid regurgitation were listed for transplant.

With her colleagues, Dr. Wright plans to investigate disparities in the second interstage, between S2P and stage 3 palliation.

 

Reference

Wright LK, Cabrera AG, Carrillo SA, Cua CL, Davis JA, Shustak RJ, Texter K, Nandi D. Single Ventricle Infant Deaths Without Transplant Referral: Room for Improvement?. Pediatric Cardiology. 2026; doi.org/10.1007/s00246-026-04309-w.

Image credit: Adobe Stock

 

About the author

JoAnna Pendergrass

JoAnna Pendergrass, DVM, is a veterinarian and freelance medical writer in Atlanta, GA. She received her veterinary degree from the Virginia-Maryland College of Veterinary Medicine and completed a 2-year postdoctoral research fellowship at Emory University’s Yerkes Primate Research Center before beginning her career as a medical writer.

As a freelance medical writer, Dr. Pendergrass focuses on pet owner education and health journalism. She is a member of the American Medical Writers Association and has served as secretary and president of AMWA’s Southeast chapter.

In her spare time, Dr. Pendergrass enjoys baking, running, and playing the viola in a local community orchestra.

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