Counseling Practices for Fetal Hypoplastic Left Heart Syndrome

Michael J. Walsh*, George R. Verghese, M. Eric Ferguson, Nora F. Fino, David J. Goldberg, Sonal T. Owens, Nelangi Pinto, Sinai C. Zyblewski, Michael D. Quartermain

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

6 Scopus citations

Abstract

While counseling parents of a fetus diagnosed with hypoplastic left heart syndrome (HLHS), pediatric cardiologists play a critical role in shaping a family’s expectations for the months and years to come. However, techniques for the most effective counseling practices have not been studied, and significant variation among physicians is likely present. Web-based survey of pediatric cardiologists that perform fetal echocardiography using snowball sampling. 201 physicians responded (61% male, 81% from academic centers, and 95% from the U.S.), with an average experience of 12 years. The majority of respondents (73%) typically received initial referrals for HLHS between 20 and 24 weeks of gestation. Most physicians counsel families alone (54%), while others counsel with a nurse (35%), social worker (12%), and/or maternal-fetal medicine colleague (15%). Termination of pregnancy was discussed by 79% of respondents, although 15% did not know their state’s legal limit for termination. While initial counseling sessions routinely described the typical earlier ramifications of HLHS, many long-term sequelae of the disease were not commonly discussed. Content of counseling was affected by region of the country, but not by practice setting, experience, or fetal volume. Respondents identified multiple barriers that limited their counseling practices. Our data suggest that current counseling practices often fail to cover important information. Perceived barriers to a full discourse on long-term sequelae of HLHS are common and may lead to a disconnect between reality and a family’s understanding of the natural history of palliated HLHS. Opportunities to improve counseling practices exist, and there may be benefits to gain from more formal training.

Original languageEnglish (US)
Pages (from-to)946-958
Number of pages13
JournalPediatric Cardiology
Volume38
Issue number5
DOIs
StatePublished - Jun 1 2017

Keywords

  • Fetal cardiology
  • Fetal echocardiography
  • Fontan procedure
  • Hypoplastic left heart syndrome
  • Norwood procedure
  • Protein-losing enteropathy

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Cardiology and Cardiovascular Medicine

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