Research Horizons


Defining Expectations for Infants with Hypoplastic Left Heart Syndrome Who Survive Surgery

Heart Institute: Cardiothoracic Surgery | Top Scientific Achievement
2023 Research Discoveries

Most infants born with hypoplastic left heart syndrome (HLHS) undergo either heart repair or heart transplant surgery in their first week of life. Between 75–90% of these patients recover to be discharged from the hospital, and around 60% live to the age of 6 years.

Yet despite recent advances in prenatal diagnosis, surgical management and perioperative care, hospital readmission and mortality rates remain high.

Corresponding author Jason Greenberg, MD, and senior author David Morales, MD, led a study to track a metric called “days alive and outside of hospital” to evaluate surgically palliated patients’ first year of life. The team’s goals included improving family counseling resources for parents to provide clear expectations after surgery, and to identify clinical factors associated with readmissions and mortality rates.

Researchers found that, on average, families of babies born with HLHS could expect to spend about two months in the hospital in the year after surgery.

They also found that preterm birth, the presence of a chromosomal abnormality, non-White race or ethnicity, and older age at the time of the first operation indicate worse outcomes.

“Knowledge of the expected one-year clinical course of HLHS infants who undergo surgical palliation and the prospective identification of those likely to experience inferior outcomes and greater hospital resource utilization is invaluable to the ongoing effort to ensure informed, equitable, patient-centered outcomes for even the highest-risk congenital heart disease patients,” Greenberg says.

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Publication Information
Original title: Defining Expectations for Infants With Hypoplastic Left Heart Syndrome Who Survive Initial Surgical Palliation
Published in: World Journal for Pediatric and Congenital Heart Surgery
Publish date: January 2023
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Research By

Jason Greenberg, MD, MS
Jason Greenberg, MD, MS
David L.S. Morales, MD
David L.S. Morales, MD
Executive Co-Director, Heart Institute and Director, Division of Cardiothoracic Surgery