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Updated: Sep 30, 2025

Implantation of Total Artificial Heart in Congenital Heart Disease
Published on: July 18, 2014
Waitlist Outcomes for Children With Congenital Heart Disease: Lessons Learned From Over 5000 Heart Transplant
Madeleine Townsend1, Tara Karamlou2, Gerard Boyle3
1Department of Pediatrics, Stollery Children's Hospital, University of Alberta, Edmonton, Canada.
Insights
Pediatric heart transplant waitlist survival for children with congenital heart disease (CHD) has improved over time, but outcomes remain worse than for cardiomyopathy patients. Ventricular assist device (VAD) therapy may enhance future waitlist results.
Area of Science:
- Pediatric Cardiology
- Transplant Surgery
- Medical Device Technology
Background:
- Examining pediatric heart transplant policy changes and ventricular assist device (VAD) approval impacts.
- Assessing waitlist (WL) outcomes for children with congenital heart disease (CHD).
Purpose of the Study:
- To evaluate the effect of evolving pediatric heart allocation policies and the Berlin VAD on WL outcomes for pediatric CHD patients.
- To compare WL outcomes for CHD patients across different time eras and with cardiomyopathy (CMP) patients.
Main Methods:
- Analysis of the Scientific Registry of Transplant Recipients database (1999-2019).
- Inclusion of all pediatric patients (<18 years) with CHD and cardiomyopathy (CMP) on the WL.
- Stratification into four eras: 1999-2008, 2009-2011, 2012-2016, and 2016-2019.
Main Results:
- Waitlist survival for children with CHD significantly improved from Era 1 to Era 4 (P < .001).
- Patients listed in Era 4 were less likely to be infants or on mechanical support (ventilation/ECMO) but more likely to be on a VAD compared to earlier eras.
- Despite improvements, children with CHD in Era 4 had inferior WL survival compared to CMP patients (P < .001).
Conclusions:
- Children with CHD are increasingly listed with less advanced heart failure, showing improved WL survival over time.
- Pediatric WL outcomes for CHD patients remain poorer than for CMP patients.
- Advancements in pediatric medical care and VAD technology hold promise for improving future WL outcomes.
Background:
We evaluated the impact of pediatric heart-allocation policy changes over time and the approval of the Berlin ventricular assist device (VAD) on waitlist (WL) outcomes for children with congenital heart disease (CHD).
Methods:
The Scientific Registry of Transplant Recipients database was evaluated to include all children (age < 18) with CHD and cardiomyopathy (CMP) on the WL between 1999 and 2019, divided into 4 eras: Era 1 (1999-2008); Era 2 (2009-2011); Era 3 (2012-2016); and Era 4 (2016-2019). WL characteristics and survival outcomes were evaluated for patients with CHD over time and were compared to those with CMP listed currently (Era 4).
Results:
We included 5185 children with CHD on the WL during the study period; 1999 (39%) were listed in Era 1; 693 (13%) in Era 2; 1196 (23%) in Era 3; and 1297 (25%) in Era 4. Compared to the CHD WL in eras 1 and 2, those in Era 4 were less likely to be infants (48% vs 49% vs 43%), on mechanical ventilation (30% vs 26% vs 19%), on extracorporeal membrane oxygenation (15% vs 9.7% vs 6.2%), and were more likely to be on a VAD (2.4% vs 2.2% vs 6.0%) (P < .05 for all). WL survival improved in children with CHD from Era 1 to Era 4 (P < .001). However, in Era 4, children with CHD had lower WL survival than those with CMP (P < .001).
Conclusion:
Children with CHD are increasingly being listed with less advanced heart failure, and they have had improved WL survival over time; however, WL outcomes remain inferior to those with CMP. Advances in pediatric medical and VAD therapy may improve future WL outcomes.
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