Single Ventricle Infant Deaths Without Transplant Referral: Room for Improvement? - Scorecard - MDSpire

Single Ventricle Infant Deaths Without Transplant Referral: Room for Improvement?

  • By

  • Lydia K. Wright

  • Antonio G. Cabrera

  • Sergio A. Carrillo

  • Clifford L. Cua

  • Jo Ann Davis

  • Rachel J. Shustak

  • Karen Texter

  • Deipanjan Nandi

  • May 28, 2026

  • 0 min

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Clinical Scorecard: Enhancing Outcomes for Infants with Single Ventricle Conditions: Addressing Transplant Referral Gaps?

At a Glance

CategoryDetail
Condition
Key MechanismsHeart failure is common in infants; heart transplant has been shown to be a viable alternative to staged palliation.
Target Population
Care Setting

Key Highlights

  • Infant mortality remains high, with rates up to 45% in the first year of life.
  • Heart transplant outcomes for HLHS are comparable to other congenital heart diseases.
  • Lower rates of transplant referral have been observed in infants from lower socioeconomic statuses and minority races, as indicated by indirect evidence.

Guideline-Based Recommendations

Diagnosis

  • Assess prenatal/fetal factors, birth weight, gestational age, and significant tricuspid regurgitation.

Management

  • Consider heart transplant for infants with heart failure or high-risk features, as supported by clinical evidence.

Monitoring & Follow-up

  • Track outcomes to one year of age, including death, transplant referral, and other early exits.

Risks

  • Higher mortality rates have been noted in infants from low SES neighborhoods and minority racial/ethnic backgrounds, according to recent studies.

Patient & Prescribing Data

Infants undergoing Stage 1 palliation for HLHS

Transplant referral patterns may contribute to disparate outcomes.

Clinical Best Practices

  • Utilize the Child Opportunity Index to assess neighborhood-level health indicators, as suggested by recent research.
  • Implement strategies to improve access to transplant referrals for disadvantaged populations, based on identified disparities.

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