International fetal cardiac intervention registry: A worldwide collaborative description and preliminary outcomes

Anita J. Moon-Grady*, Shaine A. Morris, Michael Belfort, Ramen Chmait, Joanna Dangel, Roland Devlieger, Stephen Emery, Michele Frommelt, Alberto Galindo, Sarah Gelehrter, Ulrich Gembruch, Sofia Grinenco, Mounira Habli, Ulrike Herberg, Edgar Jaeggi, Mark Kilby, Eftichia Kontopoulos, Pablo Marantz, Owen Miller, Lucas OtanõCarlos Pedra, Simone Pedra, Jay Pruetz, Ruben Quintero, Greg Ryan, Gurleen Sharland, John Simpson, Emanuel Vlastos, Wayne Tworetzky, Louise Wilkins-Haug, Dick Oepkes

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

82 Citations (Scopus)


Background Invasive fetal cardiac intervention (FCI) has been reported in single-institution series, promoting technical and physiologic success. Objectives This study describes the creation of an international registry of cases presenting for FCI, intended to compile technical and outcome data from a multicenter cohort. Methods For this initial analysis, the entire database of the International Fetal Cardiac Intervention Registry (IFCIR) was queried for details of diagnoses, procedures, and outcomes. Maternal-fetal dyads from January 2001 through June 2014 were included. Results Eighteen institutions submitted data by data harvest. Of 370 cases entered, 245 underwent FCI: 100 aortic valvuloplasties from a previous single-center report (excluded from additional reporting here), an additional 86 aortic and 16 pulmonary valvuloplasties, 37 atrial septal cases, and 6 unclassified cases. FCI did not appear to affect overall survival to hospital discharge. Among live-born infants with a fetal diagnosis of aortic stenosis/evolving hypoplastic left heart syndrome, more than twice as many were discharged with biventricular circulation after successful FCI versus those meeting institutional criteria but without any or successful FCI (42.8% vs. 19.4%, respectively). When fetal deaths were counted as treatment failures, the percentages were similar: biventricular circulation at discharge was 31.3% versus 18.5% for those discharged with univentricular palliation. Survival to discharge for live-born fetuses with atrial restriction was similar to that of those undergoing technically successful versus unsuccessful FCI (63.6% vs. 46.7%, respectively), although criteria for diagnosis were nonuniform. Conclusions We describe the contents of the IFCIR and present post-natal data to suggest potential benefit to fetal therapy among pregnancies considered for possible intervention and support proposals for additional work.

Original languageEnglish
Pages (from-to)388-399
Number of pages12
JournalJournal of the American College of Cardiology
Issue number4
Publication statusPublished - 28 Jul 2015
Externally publishedYes

Bibliographical note

Publisher Copyright:
© 2015 American College of Cardiology Foundation.


  • congenital heart defects
  • fetal cardiac intervention
  • fetal echocardiography
  • valvuloplasty


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