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Practice variations for fetal and neonatal congenital heart disease within the Children’s Hospitals Neonatal Consortium

Pediatric Research (2022)Cite this article

Abstract

Background

Many aspects of care for fetuses and neonates with congenital heart disease (CHD) fall outside standard practice guidelines, leading to the potential for significant variation in clinical care for this vulnerable population.

Methods

We conducted a cross-sectional survey of site sponsors of the Children’s Hospitals Neonatal Consortium, a multicenter collaborative of 41 Level IV neonatal intensive care units to assess key areas of clinical practice variability for patients with fetal and neonatal CHD.

Results

We received responses from 31 centers. Fetal consult services are shared by neonatology and pediatric cardiology at 70% of centers. Three centers (10%) routinely perform fetal magnetic resonance imaging (MRI) for women with pregnancies complicated by fetal CHD. Genetic testing for CHD patients is routine at 76% of centers. Preoperative brain MRI is standard practice at 5 centers (17%), while cerebral NIRS monitoring is regularly used at 14 centers (48%). Use of electroencephalogram (EEG) after major cardiac surgery is routine in 5 centers (17%). Neurodevelopmental follow-up programs are offered at 30 centers (97%).

Conclusions

Many aspects of fetal and neonatal CHD care are highly variable with evolving shared multidisciplinary models.

Impact

  • Many aspects of fetal and neonatal CHD care are highly variable.

  • Genetic testing, placental examination, preoperative neuroimaging, and postoperative EEG monitoring carry a high yield of finding abnormalities in patients with CHD and these tests may contribute to more precise prognostication and improve care.

  • Evidence-based standards for prenatal and postnatal CHD care may decrease inter-center variability.

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Fig. 1: Optimizing care for patients with congenital heart disease (CHD) from prenatal diagnosis to neonatal care and beyond.
Fig. 2: Postnatal neuromonitoring.
Fig. 3: Perceived variability of prenatal and postnatal congenital heart disease (CHD) care.

Data availability

All data generated or analyzed during this study are included in this published article and its Supplementary Information file.

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Acknowledgements

We are indebted to the following institutions that serve the infants and their families, and these institutions also have invested in and continue to participate in the Children’s Hospital’s Neonatal Database (CHND). Jeanette Asselin, Beverly Brozanski, David Durand (ex officio), Francine Dykes (ex officio), Jacquelyn Evans (Executive Director), Theresa Grover, Karna Murthy (Chair), Michael Padula, Eugenia Pallotto, Anthony Piazza, Kristina Reber, and Billie Short are members of the Children’s Hospitals Neonatal Consortium, Inc. For more information, please contact: support@thechnc.org.

Funding

No funding was obtained for this study. The Children’s Hospitals Neonatal Consortium provided administrative support for survey distribution.

Author information

Authors and Affiliations

  1. Department of Pediatrics, University of Texas Southwestern Medical Center, Dallas, TX, USA

    Rachel L. Leon, June Hu & Sushmita G. Yallpragada

  2. Boston Children’s Hospital, Harvard Medical School, Harvard University, Boston, MA, USA

    Philip T. Levy

  3. Department of Pediatrics, Emory University and Children’s Healthcare of Atlanta, Atlanta, GA, USA

    Shannon E. G. Hamrick

  4. Department of Pediatrics, The Ohio State University College of Medicine, Columbus, OH, USA

    Molly K. Ball

  5. AI DuPont Hospital for Children, Wilmington, DE, USA

    Kevin Sullivan

  6. All Children’s Hospital, St, Petersburg, FL, USA

    Victor McKay

  7. American Family Children’s Hospital, Madison, WI, USA

    Jamie Limjoco

  8. Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, USA

    Karna Murthy & Gustave Falciglia

  9. Arkansas Children’s Hospital, Little Rock, AR, USA

    Robert Lyle & Becky Rogers

  10. Brenner Children’s Hospital, Winston Salem, NC, USA

    Cherie Welch

  11. Children’s Healthcare of Atlanta, Atlanta, GA, USA

    Anthony Piazza

  12. Children’s Hospital & Research Center Oakland, Oakland, CA, USA

    Priscilla Joe

  13. Children’s Hospital Boston, Boston, MA, USA

    Anne Hansen

  14. Children’s Hospital Colorado, Aurora, CO, USA

    Theresa Grover

  15. Children’s Hospital of Alabama, Birmingham, AL, USA

    Carl Coghill

  16. Children’s Hospital of Pittsburgh of UPMC, Pittsburgh, PA, USA

    Toby Yanowitz

  17. Children’s Medical Center, Dallas, TX, USA

    Rashmin Savani

  18. Children’s Mercy Hospitals & Clinics, Kansas City, MO, USA

    Eugenia Pallotto

  19. Children’s National Medical Center, Washington, DC, USA

    Billie Short & An Massaro

  20. Children’s Healthcare of Atlanta at Scottish Rite, Atlanta, GA, USA

    Gregory Sysyn

  21. Children’s Hospital Los Angeles, Los Angeles, CA, USA

    Rachel Chapman

  22. Children’s Hospital of Michigan, Detroit, MI, USA

    Girija Natarajan

  23. Children’s Hospital of Omaha, Omaha, NE, USA

    Lynne Willett & Nicole Birge

  24. Children’s Hospital of Wisconsin, Milwaukee, WI, USA

    Michael Uhing & Ankur Datta

  25. Children’s Hospital Orange County, Los Angeles, CA, USA

    Michel Mikhael

  26. Cincinnati Children’s Hospital, Cincinnati, OH, USA

    Beth Haberman

  27. Connecticut Children’s Hospital, Hartford, CT, USA

    Annmarie Golioto

  28. Cook Children’s Health Care System, Fort Worth, TX, USA

    Annie Chi & Yvette Johnson

  29. Florida Hospital for Children, Orlando, FL, USA

    Rajan Wadhawan

  30. Hospital for Sick Children, Toronto, ON, Canada

    Kyong-Soon Lee

  31. Le Bonheur Children’s Hospital, Memphis, TN, USA

    Ajay Talati

  32. Nationwide Children’s Hospital, Columbus, OH, USA

    Kristina Reber

  33. Primary Children’s Medical Center, Salt Lake City, UT, USA

    Con Yee Ling

  34. Rady Children’s Hospital, San Diego, CA, USA

    Mark Speziale & Laurel Moyer

  35. Riley Children’s Hospital, Indianapolis, IN, USA

    William Engle

  36. Seattle Children’s Hospital, Seattle, WA, USA

    Elizabeth Jacobsen-Misbe & Robert DiGeronimo

  37. St. Christopher’s Hospital for Children, Philadelphia, PA, USA

    Suzanne Touch

  38. St. Louis Children’s Hospital, St Louis, MO, USA

    Rakesh Rao & Beverly Brozanski

  39. Texas Children’s Hospital, Houston, TX, USA

    Gautham Suresh

  40. The Children’s Hospital of Philadelphia, Philadelphia, PA, USA

    Michael Padula & David Munson

Authors
  1. Rachel L. Leon
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  2. Philip T. Levy
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  3. June Hu
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  4. Sushmita G. Yallpragada
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  5. Shannon E. G. Hamrick
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  6. Molly K. Ball
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Consortia

the CHNC Cardiac Focus Group

  • Kevin Sullivan
  • , Victor McKay
  • , Jamie Limjoco
  • , Karna Murthy
  • , Gustave Falciglia
  • , Robert Lyle
  • , Becky Rogers
  • , Cherie Welch
  • , Anthony Piazza
  • , Priscilla Joe
  • , Anne Hansen
  • , Theresa Grover
  • , Carl Coghill
  • , Toby Yanowitz
  • , Rashmin Savani
  • , Eugenia Pallotto
  • , Billie Short
  • , An Massaro
  • , Gregory Sysyn
  • , Rachel Chapman
  • , Girija Natarajan
  • , Lynne Willett
  • , Nicole Birge
  • , Michael Uhing
  • , Ankur Datta
  • , Michel Mikhael
  • , Beth Haberman
  • , Annmarie Golioto
  • , Annie Chi
  • , Yvette Johnson
  • , Rajan Wadhawan
  • , Kyong-Soon Lee
  • , Ajay Talati
  • , Kristina Reber
  • , Con Yee Ling
  • , Mark Speziale
  • , Laurel Moyer
  • , William Engle
  • , Elizabeth Jacobsen-Misbe
  • , Robert DiGeronimo
  • , Suzanne Touch
  • , Rakesh Rao
  • , Beverly Brozanski
  • , Gautham Suresh
  • , Michael Padula
  •  & David Munson

Contributions

R.L.L.: concept, data collection and analysis, writing, revising, final approval. P.T.L.: concept, writing, revising, final approval. J.H., S.G.Y.: data analysis, revising, final approval. S.E.G.H., M.K.B.: concept, data analysis, revising, final approval.

Corresponding author

Correspondence to Rachel L. Leon.

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Competing interests

The authors declare no competing interests.

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Leon, R.L., Levy, P.T., Hu, J. et al. Practice variations for fetal and neonatal congenital heart disease within the Children’s Hospitals Neonatal Consortium. Pediatr Res (2022). https://doi.org/10.1038/s41390-022-02314-2

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