Neonatology and the Rights of Families

Bill Silverman

Document Library

medical | pain and suffering | parenting | therapy | ethical | legal | history

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(Recommended articles in blue are not linked to from this site.)


An introduction to Extremely Premature Babies - Dr Doug Derleth PDF (Designed to be given to the parent of a 22 - 24 week premature infant.)

The Need for Better Premature Infant Follow-up Studies - Helen Harrison (An article first published in APEP-Info looking at long term outcomes of premature babies.)

Preemies on Steroids:  A New Iatrogenic Disaster? - Helen Harrison (First Published in Birth March 2001, Vol.28, No. 1, pp.57-59.)

Cerebral White Matter Injury of the Premature Infant -- More Common Than You Think.
Volpe, JJ - Pediatrics_20003;112;176-180.
This important review of recent brain-imaging studies shows that the majority (up to 80%) of prematurely-born children suffer brain damage that is visible by new magnetic resonance imaging techniques. This damage, to the white matter of the brain, is referred to as PVL or periventricular leukomalacia. PVL, these new studies reveal, is often undetected in the NICU, and underestimated by neonatologists.
These new findings of more widespread brain damage in preemies may explain why children with so-called "normal" NICU ultrasound scans often exhibit such signs of neurologic damage as seizures disorders; and cognitive, motor, behavioral, and sensory impairment.
( Available to _Pediatrics_ subscribers, or for a fee, at

School-Age Outcomes in Children Who Were Extremely Low Birth Weight From Four International Population-Based Cohorts.
Oct 2003, Vol. 112 Issue 4, p943, 8p
( Available to _Pediatrics_ subscribers, or for a fee, at

Developmental Outcomes of Premature, Low Birth Weight, and Medically Fragile Infants
Neonatal nurses need to be more aware of the possible developmental outcomes of premature, low birth weight, and medically fragile infants.
Don't miss this comprehensive literature review. NBIN 3(3) 2003 (

Motor Outcomes in Premature Infants Maureen Connors Lenke, BS, OTR/L
Abstract and Introduction
Abstract:Motor impairment is frequently associated with prematurity. Many of the early signs of a significant motor deficit in the premature infant will be transient and resolve during the first year of life. However, despite medical advances in the neonatal intensive care unit, the incidence of cerebral palsy is reported at ***32% ****in infants weighing less than 1,500 grams. The developmental progression of the premature infant, including early differences between full-term and preterm infants, that affects motor examination; factors that predispose premature infants to neuromotor deficits; and the long-term implications of premature birth from a motoric perspective, will be addressed.(

Does My Child Really Need to Wear These Glasses? A Review of Retinopathy of Prematurity and Long-Term Outcomes
ROP is a common diagnosis in premature infants, which may result in visual deficits or blindness. It is a disorder that requires vigilant
surveillance and timely intervention. NBIN 3(3) 2003 (


Pain and Suffering

Pain control in neonates - William A. Silverman, MD PDF (This document was OCRed and may contain some spelling errors)

Whitfield, MF and Grunau, RE. Behavior, pain perception, and the extremely low-birth weight survivor, in _Outcome of the Very Low-Birth Weight Infant: Clinics in Perinatology_ (ed. B.Vohr), June 2000, Vol. 27, pp.363-379.
"...There is ample evidence that newborns, even very immature newborns, mount a hormonal, behavioral, and neural response to pain, and that pain has adverse effects on outcome...There is a gathering body of animal and human evidence that suggests that early pain has long-term consequences on the developing individual and prior pain experience may explain some of the behavioral characteristics described in prematures at school age and in neonatal follow-up studies."

Stevens, B and Grunau RE. Pain in Vulnerable Infants: Clinics in Perinatology, September 2002, Volume 29.
(This is a collection of 12 articles on neonatal pain.) From the introduction to the first article:
"About 300,000 low birth weight neonates are born in the United States each year and 60,000 of them are classified as very low birth weight (<1500 grams). An overwhelming majority of these children are born preterm, at a time when the brain's architecture and vasculature have not developed completely. The percentage of low birth weight and very low birth weight babies has increased gradually in the last 20 years, with a concurrent decline in neonatal and infant mortaility rates. It has been suggested that this decline in mortality rates could be the result of improved obstetric and neonatal care.

"Vulnerability of the Developing Brain: Neuronal Mechanisms" by A.T. Bhutta and K.J.S. Anand, in _Pain in Vulnerable Infants: Clinics in Perinatology_ (eds. B. Stevens and RE Grunau) September 2002, Vol. 29.
Despite impressive acheivements in the increasing survival of this population, parents and teachers may be dismayed to find a high prevalence of cognitive deficits, learning difficulties, and abnormal behaviors...Multiple follow-up studies of ex-preterm neonates have reported a high prevalence of major neurodevelopmental deficits, with lifetime needs for special assistance and increasing burdens on the annual health care budget."

Anand KJS, et al. Randomised trial of fentanyl anesthesia in preterm babies undergoing surgery: Effects on the stress response. Lancet 1987;1:62-66.

Rovner S. Surgery Without Anesthesia: Can Preemies Feel Pain?" The Washington Post (Healthtalk) pp 7-8, August 12, 1986.

Anand KJS, Hickey PR. Pain and its effects in the human fetus and neonate. N Engl J Med 1987;31;31:3121- 1329.

Whitfield, MF and Grunau, RE. Behavior, pain perception, and the extremely low- birth weight survivor.Clinics in Perinatology 2000;27:363-379.

Anand, KJS. Pain, plasticity, and premature birth: a prescription for permanent suffering? Nature Medicine 2000;6:971-973.

Simons S, et al. The Frequency and Painfulness of Daily Procedures at the Neonatal Intensive Care Unit. Pediatric Research April 2002#2112.

Pain and Pain Management in Newborn Infants: A Survey of Physicians and Nurses Fran Lang Porter, Cynthia M. Wolf, Jennifer Gold, David Lotsoff, and J. Philip Miller - PEDIATRICS Vol. 100 No. 4 October 1997, pp. 626-632
An excerpt from the discussion section of this article:
Results from this study indicate that most neonatal clinicians believe infants experience pain equal to or greater than that experienced by adults. These beliefs are generally consistent with current data and confirm a previous report suggesting that attitudes have recently changed in the area of neonatal pain. Clinicians also rated the painfulness of most of the listed nursery procedures as being at least moderately if not very painful. Only tracheal suctioning, insertion of a gavage tube and insertion of an umbilical catheter were rated as being less than moderately painful. Together, these findings indicate that individuals who are at the bedside of newborn infants on a daily basis generally believe those infants are capable of experiencing pain and are routinely exposed to painful procedures. Indeed, the higher the clinicians rated the pain that infants could experience as compared with adults, the higher they rated the painfulness of the procedures the infants commonly undergo.
Despite this increased acknowledgment of infant procedural pain, clinicians generally believed that neither pharmacologic agents nor comfort measures were being used very often to manage infant pain. Even for those procedures they rated as most painful, neither pharmacologic (circumcision = 1.0, cutdown = 1.9, and insertion of chest tube = 1.8) nor comfort (circumcision = 2.1, cutdown = 1.7, and insertion of chest tube = 1.4) measures were believed to be used often.



Welcome to the North Atlantic ((An alternative perspective to Holland - black cruise adventure by A.D.Chacon)

A Call for Help from the Victor Dore School for the Handicapped - The Clientele and the Needs Grow but the Budget Stagnates

Cri d'alarme à l'école Victor-Doré pour handicapés - La clientèle et les besoins augmentent mais les budgets stagnent

The Family Centered Neonatal Care Presentation by Helen Harrison sums up the motivation and beliefs of the people who make up the Narof Community.
(This presentation requires the install ation of Shockwave Flash)




Boris. It is not always the most expensive and up to date therapies and therapists that bring the grestest results. Thinking outside of the box bought a therapy cat into Rowan's life and taught him how to communicate.



Family Centered Neonatal Care Powerpoint Presentation - by Helen Harrison (The original powerpoint presentation is available from this link It is 1.64M is size and will take some time to download for people on slow connections.)

The Principles for Family Centered Neonatal Care - Helen Harrison PDF (This document was OCRed and may contain some spelling errors)

Restraining the unstustainable - William A. Silverman, MD (Pediatrics 2003;111:672-674) - Key words: health care, medical economics, neonatology

Overtreatment of Neonates? A Personal Retrospective - William A. Silverman, MD PDF (Pediatrics Vol 90, No 6 December 1992)

An Avalanche on the Slippery Slope (By a member of the NaRF list who wishes to remain anonymous.)

Letter to a Neonatologist (To Dr. S. Saigal from Hugh and Andrea Williams)

Pour une reconnaissance d'un syndrome de la prématurité - Gaëlle Trébaol - Publié dans Ethica (Canada) et dans Ethica Clinica (Belgique), avril 2003.

Health, Hope and Hype: Too often, the media has a hand in overselling the latest medical "breakthroughs."
Shannon Brownlee. The Washington Post: National Weekly Edition, August 11-17, 2003,p. 22
Although not specifically about neonatal care, this article gives important insights into the media's motives in writing all those misleading "miracle baby" stories.



Commentary on the Messenger Case - Helen Harrison PDF (Journal of Perinatology, Vol 16, No 4, 1996)

Sidney Ainsley Miller, by and Through Her next Friend Karla H. Miller, and Karla H. Miller and J. Mark Miller, Individually v. Hca, Inc., Hca-hospital Corporation of America, Hospital Corporation of America and Columbia/Hca Healthcare Corporation - Appeal Decision
"The narrow question we must decide is whether Texas law recognizes a claim by parents for either battery or negligence because their premature infant, born alive but in distress at only twenty-three weeks of gestation, was provided resuscitative medical treatment by physicians at a hospital without parental consent. The court of appeals, with one justice dissenting, held that neither claim could be maintained as a matter of law because parents have no right to refuse urgently-needed life-sustaining medical treatment for their child unless the child’s condition is “certifiably terminal” under the Natural Death Act



Neonnatology on the Web's History Section - When we look at the power and influence of neonatology today, it is interesting to consider how and why it all happened. See this site's fascinating section on the history of newborn care from 715 BC to the present. (Click on the "Classics and Diversions" section.)

Robertson AF. Reflections on Errors in Neonatology: I The "Hands-Off" Years, 1920 to 1950. Journal of Perinatology 2003;23:48-55.

Robertson AF. Reflections on Errors in Neonatology: II The "Heroic" Years, 1950 to 1970. Journal of Perinatology 2003;23:154-161.

Robertson AF. Reflections on Errors in Neonatology: III The "Experienced" Years, 1970 - 2000. Journal of Perinatology 2003;23:240-249.

Family Centered Neonatal Care

The Family Centered Neonatal Care Presentation by Helen Harrison sums up the motivation and beliefs of the people who make up the Narof Community.
(This presentation requires the installation of Shockwave Flash)



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