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Be y o n d t h e n I C U C omprehensive C are of the H igh-Risk Infant 00_Malcolm_FM.indd 1 21/08/14 6:54 PM Notice Medicine is an ever-changing science. As new research and clinical experience broaden our knowledge, changes in treatment and drug therapy are required. T e authors and the publisher o this work have checked with sources believed to be reliable in their e orts to provide in ormation that is complete and generally in accord with the standards accepted at the time o publication. However, in view o the possibility o human error or changes in medical sciences, neither the authors nor the publisher nor any other party who has been involved in the preparation or publication o this work warrants that the in ormation contained herein is in every respect accurate or complete, and they disclaim all responsibility or any errors or omissions or or the results obtained rom use o the in ormation contained in this work. Readers are encouraged to con rm the in ormation contained herein with other sources. For example and in particular, readers are advised to check the product in ormation sheet included in the package o each drug they plan to administer to be certain that the in ormation contained in this work is accurate and that changes have not been made in the recommended dose or in the contraindications or administration. T is recommendation is o particular importance in connection with new or in requently used drugs. 00_Malcolm_FM.indd 2 21/08/14 6:54 PM Be y o n d t h e n I C U C omprehensive C are of the H igh-Risk Infant Edited by William F. Malcolm, MD Associate Pro essor o Pediatrics Director, Intermediate Level Nurseries Division o Neonatal-Perinatal Medicine Duke University Medical Center Durham, North Carolina Consultants Ricki F. Goldstein, MD Richard J. Martin, MD Betty Vohr, MD Pro essor o Pediatrics Drusinsky-Fanarof Chair in Pro essor o Pediatrics Director, High-Risk In ant Neonatology Medical Director Neonatal Follow-Up Program Pro essor o Pediatrics Follow-Up Program Division o Rainbow Babies & Children’s Women & In ants Hospital Neonatal-Perinatal Hospital Alpert Medical School o Medicine Case Western Reserve Brown University Duke University Medical University Providence, Rhode Island Center Cleveland, Ohio Durham, North Carolina New York Chicago San Francisco Athens London Madrid Mexico City Milan New Delhi Singapore Sydney Toronto 00_Malcolm_FM.indd 3 26/08/14 4:14 PM Copyright © 2015 by McGraw-Hill Education. All rights reserved. Except as permitted under the United States Copyright Act of 1976, no part of this publication may be reproduced or distributed in any form or by any means, or stored in a database or retrieval system, without the prior written permission of the publisher. 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Summary: “Beyond the NICU: Comprehensive Care of the High-Risk Infant delivers practical, evidence-based strategies for the care of convalescing NICU graduates in both inpatient and outpatient settings. In four sections, the book covers common problems shared by high-risk infants, role of various care providers from parents to specialists and timely interventions of therapy, timing and execution of transitioning the infant from intensive to convalescent care and from hospital to home, the etiology of chronic conditions affecting high-risk infants, details of convalescent care, discharge planning, and follow-up care for pediatricians”—Provided by publisher. TERMS OF USE This is a copyrighted work and McGraw-Hill Education and its licensors reserve all rights in and to the work. Use of this work is subject to these terms. 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Under no circumstanc- es shall McGraw-Hill Education and/or its licensors be liable for any indirect, incidental, special, punitive, consequential or similar damages that result from the use of or inability to use the work, even if any of them has been advised of the possibility of such damages. This limitation of liability shall apply to any claim or cause whatsoever whether such claim or cause arises in contract, tort or otherwise. To my parents, who always taught me to go a little beyond. 00_Malcolm_FM.indd 5 21/08/14 6:54 PM This page intentionally left blank Contents Contributors ix Pre ace xxiii SECTION I: Introduction 1 1. Origins o the Premature In ant Nursery and Follow-Up Care 2 2. The High-Risk In ant: Commonalities o the NICU Graduate Born Premature and at Term 7 3. Care o NICU Graduates: Role o the Primary Care Provider 10 4. Parents and Families in the NICU and Beyond 19 5. Hospital to Home Transitions or the High-Risk In ant 27 6. Essential Components o a Comprehensive Follow-Up Clinic 33 SECTION II: Medical Care of the Preterm Infant 41 7. Chronic Respiratory Conditions o the Preterm In ant 42 8. Apnea, Bradycardia, and Desaturation 57 9. Patent Ductus Arteriosus 74 10. Adrenal Insu ciency 86 11. Nutrition and Growth 98 12. Breast eeding 121 13. Intestinal Failure 133 14. Gastroesophageal Refux and Gastroesophageal Refux Disease 150 15. Failure to Thrive in the NICU Graduate 165 16. Hypertension 186 17. Anemia o Prematurity 202 18. Hematologic Issues in the High-Risk In ant 211 19. Hyperbilirubinemia 245 20. Endocrinopathies in the High-Risk In ant 269 21. Low Bone Mass in Very Preterm or Other High-Risk In ants 308 22. IVH, PVL, and Hydrocephalus 320 23. Retinopathy o Prematurity and Ophthalmologic Issues 347 24. Cerebral Palsy 376 25. Autism Spectrum Disorder 410 26. Intrauterine Growth Restriction 434 27. Multiple Gestation Births 450 28. Late Preterm In ants 461 29. Surgical Care o the NICU Graduate 484 30. Pulmonary Hypertension o the Preterm In ant 505 v 00_Malcolm_FM.indd 7 21/08/14 6:54 PM viii co nt ent s SECTION III: Medical Care of the Term Infant 519 31. Congenital Diaphragmatic Hernia 520 32. Congenital Heart Disease in the NICU Graduate 541 33. Extracorporeal Membrane Oxygenation (ECMO) and Post-ECMO Care 579 34. Congenital Abdominal Wall Defects 599 35. Infectious Disease Issues in the NICU Graduate 615 36. Birth Asphyxia and HIE 632 37. Neonatal Abstinence Syndrome 649 38. Neural Tube Defects 665 39. Neonatal Seizures 689 40. Infant of a Diabetic Mother 702 41. Down Syndrome 725 SECTION IV: Developmental Care of the High-Risk Infant 741 42. Early Intervention Services in the NICU Graduate 742 43. NICU Environment 747 44. Gross Motor Development 764 45. Fine Motor Development 781 46. Speech and Language Development 797 47. Feeding Issues in the NICU Graduate 812 48. Hearing Loss 835 49. Neurodevelopmental Testing 845 50. Neurodevelopmental Follow-Up and Outcomes 866 51. Neonatal Palliative Care 880 APPENDICES: 903 Appendix A: Discharge Checklists 904 Appendix B: Home Equipment 910 Appendix C: Formula Recipes for Increased Calories 924 Appendix D: Telephone Triage 927 Appendix E: Coding for the NICU Graduate 931 Appendix F: Resources for Parents 946 INDEX 949 00_Malcolm_FM.indd 8 11/09/14 2:01 pm Contributors Steven Abrams, MD Medical Director, Neonatal Nutrition Program Baylor College o Medicine Neonatologist, exas Children’s Hospital Houston, exas David H. Adamkin, MD Pro essor o Pediatrics Director o Division o Neonatal Medicine Rounsavall Endowed Chair o Neonatology University o Louisville Louisville, Kentucky Obinna O. Adibe, MD, MHS Assistant Pro essor o Surgery and Pediatrics Duke University School o Medicine Durham, North Carolina ovi Anderson, MD, PhD Family Medicine Physician Oregon Health and Science University Portland, Oregon Patricia Anne Aronin, MD Pediatric Neurosurgeon, Pediatric Subspecialty Services Co-director, Mobility Program Dell Children’s Medical Center o Central exas Austin, exas Patricia Ashley, MD, PhD Assistant Pro essor o Pediatrics Division o Neonatology Duke University Medical Center Durham, North Carolina Je rey P. Baker, MD, PhD Pro essor o Pediatrics Director, History o Medicine Program rent Center or Bioethics, Humanities, and History o Medicine Duke University School o Medicine Durham, North Carolina Anthony Barone, DO Director, Division o Neonatology, Department o Pediatrics Richmond University Medical Center Staten Island Staten Island, New York x 00_Malcolm_FM.indd 9 21/08/14 6:54 PM