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Outcome of Extremely Preterm Infants (<1,000 g) With Congenital Heart Defects From the National Institute of Child Health and Human Development Neonatal Research Network

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Abstract

Little is known about the outcomes of extremely low birth weight (ELBW) preterm infants with congenital heart defects (CHDs). The aim of this study was to assess the mortality, morbidity, and early childhood outcomes of ELBW infants with isolated CHD compared with infants with no congenital defects. Participants were 401–1,000 g infants cared for at National Institute of Child Health and Human Development Neonatal Research Network centers between January 1, 1998, and December 31, 2005. Neonatal morbidities and 18–22 months’ corrected age outcomes were assessed. Neurodevelopmental impairment (NDI) was defined as moderate to severe cerebral palsy, Bayley II mental or psychomotor developmental index <70, bilateral blindness, or hearing impairment requiring aids. Poisson regression models were used to estimate relative risks for outcomes while adjusting for gestational age, small-for-gestational-age status, and other variables. Of 14,457 ELBW infants, 110 (0.8 %) had isolated CHD, and 13,887 (96 %) had no major birth defect. The most common CHD were septal defects, tetralogy of Fallot, pulmonary valve stenosis, and coarctation of the aorta. Infants with CHD experienced increased mortality (48 % compared with 35 % for infants with no birth defect) and poorer growth. Surprisingly, the adjusted risks of other short-term neonatal morbidities associated with prematurity were not significantly different. Fifty-seven (52 %) infants with CHD survived to 18–22 months’ corrected age, and 49 (86 %) infants completed follow-up. A higher proportion of surviving infants with CHD were impaired compared with those without birth defects (57 vs. 38 %, p = 0.004). Risk of death or NDI was greater for ELBW infants with CHD, although 20 % of infants survived without NDI.

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Acknowledgements

The National Institutes of Health and the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) provided grant support for the Neonatal Research Network’s Generic Database Study and Follow-Up Study. Data collected at participating sites of the NICHD NRN were transmitted to RTI International, the data coordinating center (DCC) for the network, which stored, managed, and analyzed the data for this study. On behalf of the NRN, Dr. Abhik Das (DCC principal investigator) and Ms. Nellie I. Hansen (DCC statistician) had full access to all of the data in the study, and with the NRN Center Principal Investigators, take responsibility for the integrity of the data and accuracy of the data analysis. We are indebted to our medical and nursing colleagues as well as the infants and their parents who agreed to take part in this study. The following investigators, in addition to those listed as authors, participated in this study:

NRN Steering Committee Chairs: Alan H. Jobe, MD PhD, University of Cincinnati.

Alpert Medical School of Brown University and Women & Infants Hospital of Rhode Island (U10 HD27904): William Oh, MD; Bill Cashore, MD; Regina A. Gargus, MD, FAAP; James R. Moore, MD; Bonnie E. Stephens, MD; Rachel V. Walden, MD; Barbara Alksninis, PNP; Angelita M. Hensman, RN, BSN; Dawn Andrews, RN, MS; Kristin Angela, RN; Shabnam Lainwala, MD; Theresa M. Leach, Med, CAES; Martha R. Leonard, BA, BS; Lucy Noel; Victoria E. Watson, MS, CAS.

Case Western Reserve University, Rainbow Babies & Children’s Hospital (U10 HD21364, M01 RR80): Avroy A. Fanaroff, MD; Deanne E. Wilson-Costello, MD; Harriet G. Friedman, MA; Bonnie S. Siner, RN.

Cincinnati Children’s Hospital Medical Center, University Hospital, and Good Samaritan Hospital (U10 HD27853, M01 RR8084): Kurt Schibler, MD; Edward F. Donovan, MD; Kate Bridges, MD; Jean J. Steichen, MD; Kimberly Yolton, PhD; Barbara Alexander, RN; Teresa L. Gratton, PA; Cathy Grisby, BSN, CCRC; Jody Hessling, RN; Holly L. Mincey, RN, BSN; Marcia Worley Mersmann, RN, CCRC.

Duke University School of Medicine, University Hospital, Alamance Regional Medical Center, and Durham Regional Hospital (U10 HD40492, M01 RR30): Ronald N. Goldberg, MD; Ricki F. Goldstein, MD; Kathy J. Auten, MSHS; Kathryn E. Gustafson, PhD; Melody B. Lohmeyer, RN, MSN.

Emory University Children’s Healthcare of Atlanta, Grady Memorial Hospital, and Emory University Hospital Midtown (U10 HD27851, UL1 RR25008, M01 RR39): Lucky Jain, MD; Ann M. Blackwelder, RNC, BS, MS; Sheena Carter, PhD; Maureen Mulligan LaRossa, RN; Gloria V. Smikle, PNP, MSN.

Eunice Kennedy Shriver National Institute of Child Health and Human Development: Linda L. Wright, MD; Elizabeth M. McClure, MEd.

Indiana University, University Hospital, Methodist Hospital, Riley Hospital for Children, and Wishard Health Services (U10 HD27856, M01 RR750): Brenda B. Poindexter, MD, MS; James A. Lemons, MD; Anna M. Dusick, MD, FAAP; Diana D. Appel, RN, BSN; Lon G. Bohnke, MS; Marilyn Bull, MD; Ann B. Cook, MS; Greg Eaken, PhD; Dianne E. Herron, RN; Darlene Kardatzke, MD; Carolyn Lytle, MD, MPH; Lucy C. Miller, RN, BSN, CCRC; Heike M. Minnich, PsyD, HSPP; Leslie Richard, RN; Leslie Dawn Wilson, BSN, CCRC.

RTI International (U10 HD36790): W. Kenneth Poole, PhD; Betty K. Hastings; Elizabeth M. McClure, MEd; Jamie E. Newman, PhD, MPH; Jeanette O’Donnell Auman, BS; Carolyn Petrie Huitema, MS; Scott E. Schaefer, MS; Kristin M. Zaterka-Baxter, RN BSN.

Stanford University, California Pacific Medical Center, El Camino Hospital, and Lucile Packard Children’s Hospital (U10 HD27880, M01 RR70): David K. Stevenson, MD; Marian M. Adams, MD; Charles E. Ahlfors, MD; Barry E. Fleisher, MD; Susan R. Hintz, MD MS; M. Bethany Ball, BS, CCRC; Joan M. Baran, PhD; Barbara Bentley, PhD; Lori E. Bond, PhD; Ginger K. Brudos, PhD; Maria Elena DeAnda, PhD; Anne M. DeBattista, RN, PNP; Jan T. Epcar, MA; Monica Hajdena-Dawson, MD; Jean G. Kohn, MD, MPH; Carol G. Kuelper, PhD; Julie C. Lee-Ancajas, PhD; Renee P. Pyle, PhD; Nicholas H. St. John, PhD; Robert D. Stebbins, MD.

University of Alabama at Birmingham Health System and Children’s Hospital of Alabama (U10 HD34216, M01 RR32): Kirstin J. Bailey, PhD; Fred J. Biasini, PhD; Monica V. Collins, RN, BSN, MaEd; Stephanie A. Chopko, PhD; Shirley S. Cosby, RN, BSN; Mary Beth Moses, PT, MS, PCS; Kathleen G. Nelson, MD; Myriam Peralta-Carcelen, MD, MPH; Vivien A. Phillips, RN, BSN; Julie Preskitt, MSOT, MPH; Richard V. Rector, PhD; Sally Whitley, MA, OTR-L, FAOTA.

University of California–San Diego Medical Center and Sharp Mary Birch Hospital for Women and Newborns (U10 HD40461): Neil N. Finer, MD; Paul R. Wozniak, MD; Maynard R. Rasmussen, MD; Yvonne E. Vaucher, MD, MPH; Martha G. Fuller, RN, MSN; Kathy Arnell, RNC; Rene Barbieri-Welge; Ayala Ben-Tall; Renee Bridge, RN; Clarence Demetrio, RN; Chris Henderson, RCP, CRTT; Elaine Ito; Meghan Lukasik; Deborah Pontillo; Donna Posin, OTR/L, MPA; Wade Rich, BSHS, RRT; Cheryl Runyan; James Wilkes.

University of Miami, Holtz Children’s Hospital (U10 HD21397, M01 RR16587): Charles R. Bauer, MD; Shahnaz Duara, MD; Maria Calejo, RN; Alexis N. Diaz, BA; Ruth Everett-Thomas, RN, MSN; Silvia M. Frade Eguaras, MA; Yamiley C. Gideon, BA; Sylvia Hiriart-Fajardo, MD; Amy Mur Worth, RN, MS; Alexandra Stroerger.

University of New Mexico Health Sciences Center (U10 HD27881, M01 RR997): Lu-Ann Papile, MD; Conra Backstrom Lacy, RN; Ginny Laadt, PhD, OTR; Debra V. Long, BSN; Jean Lowe, PhD; Rebecca Montman, RN.

University of Rochester, Golisano Children’s Hospital at Strong (U10 HD40521, M01 RR44, UL1 RR24160): Dale L. Phelps, MD; Gary J. Myers, MD; Linda J. Reubens, RN, CCRC; Julie Babish Johnson, MSW; Erica Burnell, RN; Diane Hust, MS, RN, CS; Rosemary L. Jensen; Emily Kushner, MA; Joan Merzbach, LMSW; Mary Rowan, RN; Kelley Yost, PhD; Lauren Zwetsch, PNP.

University of Tennessee (U10 HD21415): Sheldon B. Korones, MD; Henrietta S. Bada, MD; Tina Hudson, RN, BSN; Marilyn Williams, LCSW; Kimberly Yolton, PhD.

University of Texas Southwestern Medical Center at Dallas, Parkland Health & Hospital System and Children’s Medical Center Dallas (U10 HD40689, M01 RR633): Pablo J. Sánchez, MD; Charles R. Rosenfeld, MD; Walid A. Salhab, MD; R. Sue Broyles, MD; Roy J. Heyne, MD; Sally S. Adams, MS, RN, CPNP; Cristin Dooley, PhD, LSS; Alicia Guzman; Gaynelle Hensley, RN; Jackie F. Hickman, RN; Elizabeth Heyne, PsyD, PA-C; Christine Lupino, MS; Linda A. Madden, RN, CPNP; Susie Madison, RN; Nancy A. Miller, RN; Janet S. Morgan, RN; Catherine Twell Boatman, MS, CIMI.

University of Texas Health Science Center at Houston Medical School, Children’s Memorial Hermann Hospital, and Lyndon Baines Johnson General Hospital/Harris County Hospital District (U10 HD21373): Kathleen A. Kennedy, MD, MPH; Patricia W. Evans, MD; Margarita Jiminez, MD, MPH; Brenda H. Morris, MD; Saba Siddiki, MD; Esther G. Akpa, RN, BSN; Nora I. Alaniz, BS; Susan Dieterich, PhD; Anna E. Lis, RN, BSN; Georgia E. McDavid, RN; Margaret L. Poundstone, RN, BSN; Maegan C. Simmons, RN; Patti Pierce Tate, RCP; Stacey Reddoch, BA; Sharon L. Wright, MT (ASCP).

Wake Forest University, Baptist Medical Center, Forsyth Medical Center, and Brenner Children’s Hospital (U10 HD40498, M01 RR7122): T. Michael O’Shea, MD, MPH; Robert G. Dillard, MD; Lisa K. Washburn, MD; Cherrie D. Welch, MD, MPH; Deborah Evans Allred, MA, LPA; Donald J. Goldstein, PhD; Barbara G. Jackson, RN, BSN; Nancy J. Peters, RN, CCRP; Carroll Peterson, MA; Ellen L. Waldrep, MS; Melissa Whalen Morris, MA; Gail Wiley Hounshell, PhD.

Wayne State University, Hutzel Women’s Hospital and Children’s Hospital of Michigan (U10 HD21385): Virginia Delaney-Black, MD, MPH; Yvette R. Johnson, MD, MPH; Geraldine Muran, RN, BSN; Deborah Kennedy, RN, BSN; Debra Driscoll, RN, BSN; Laura A. Goldston, MA.

Yale University, Yale-New Haven Children’s Hospital (U10 HD27871, UL1 RR24139, M01 RR125, M01 RR6022): Richard A. Ehrenkranz, MD; Patricia Gettner, RN; Monica Konstantino, RN, BSN; Linda Mayes, MD; JoAnn Poulsen, RN; Elaine Romano, MSN; Janet Taft, RN, BSN; Joanne Williams, RN, BSN.

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Correspondence to Athina Pappas.

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This study was conducted for the Eunice Kennedy Shriver National Institute of Child Health and Human Development Neonatal Research Network.

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Pappas, A., Shankaran, S., Hansen, N.I. et al. Outcome of Extremely Preterm Infants (<1,000 g) With Congenital Heart Defects From the National Institute of Child Health and Human Development Neonatal Research Network. Pediatr Cardiol 33, 1415–1426 (2012). https://doi.org/10.1007/s00246-012-0375-8

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