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New research · Plastic Surgery
Journal of the American College of Cardiology · 2d
Cohort studyJournal of the American College of Cardiology · 2025

Long-Term Survival and Patient-Reported Outcomes After Staged Reconstructive Surgery for Hypoplastic Left Heart Syndrome.

J William Gaynor, Marlene Mahle, Richard F Ittenbach … Susan C Nicolson
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Plastic SurgeryCohort study

Long-term transplant-free survival for HLHS patients is 31% at 35 years.

Long-Term Survival and Patient-Reported Outcomes After Staged Reconstructive Surgery for Hypoplastic Left Heart Syndrome.

J William Gaynor et al. · Journal of the American College of Cardiology · 2025
Background

Survival for hypoplastic left heart syndrome (HLHS) and variants has improved over the past 4 decades; however, survival remains low compared with other forms of congenital heart disease.

Purpose

This 1) examine long-term survival and the impact of patient factors on survival for newborns with HLHS; and 2) examine functional and health outcomes, including quality-of-life (QOL) in adulthood.

Methods

The study cohort included patients with HLHS and variants undergoing the Norwood or hybrid procedure between January 1984 and December 2023.

n = 2,012 neonates
31.0%
Results
31% of patients with HLHS survived without transplant for 35 years.
n = 2,012 neonates
More results

In the study period, 2,012 neonates underwent staged reconstructive surgery for HLHS (Norwood, n = 1,921 and hybrid, n = 91).

Transplant-free survival improved over time but is not different across recent eras.

Most responders reported good to excellent general health.

“
Conclusion · 1 of 2

In this cohort of newborns undergoing staged reconstructive surgery for HLHS, fewer than one-third are alive without a transplant at 35 years of age. Survival has not improved in recent years.

Conclusion · 2 of 2

However, there is a group of survivors who report good to excellent outcomes and QOL, consistent with a "high-performing" Fontan phenotype.

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