Preface

The past 10 years has witnessed dramatic changes in the care of all neonates, especially those requiring intensive care therapies. Our understanding of physiology, pathophysiology, diagnoses, and management has evolved such that mortality has decreased; however, increasing survival often means increasing morbidities. The youngest and the sickest of neonates do not always emerge from the neonatal ICUs unscathed. This issue is the second in a two-part series devoted to issues involving the high-risk neonate.

The re-emergence of kernicterus, an acute brain injury due to very high levels of bilirubin that results in permanent damage, caught many health care providers by surprise. This dreaded disorder was thought to be a thing of the past associated with severe Rh hemolytic disease. A closer look at who was developing hyperbilirubinemia and the reasons why has led to a closer inspection of how care is provided in the normal newborn setting. Until only a few years ago, any “healthy” baby born after 34 weeks' postmenstrual age was treated pretty much the same as a full-term baby. These “near-term” infants were expected to maintain their body temperature, take in sufficient enteral feeding, and be discharged within the customary 48 hours after birth. Early discharge did not provide a big enough window for health care providers to discover how much these babies were really struggling. An expert panel was convened to examine the issues, and it renamed the group of babies born between 340/7 and 366/7 weeks' menstrual age “late-preterm infants” to highlight their lack of maturity. The article “So He's a Little Premature: What's the Big Deal?” presents an overview of the most common problems that these newborns encounter in their first days of life.

I doubt that any health care provider today is unaware of the phrases “patient safety,” “error reduction,” “sentinel event,” and “error disclosure.” A change in the institutional culture from one of blame to one that invites discourse so that mistakes and harm are decreased is ongoing in many hospitals. Smith and Cole stress the importance of team communication and collaboration in “Patient Safety: Effective Interdisciplinary Teamwork Through Simulation and Debriefing in the Neonatal ICU.” They discuss how ineffective communication can lead to a sentinel event and how those patterns of communication may be modified. It has become clear that a toxic work environment is in large part responsible for medical errors, ineffective care, and promoting conflict and stress among the health care team. The creation of expert teams using simulation-based training and debriefing (eg, NeoSim) provides the opportunity for health care professionals to work together to improve teamwork skills (including communication) and to promote patient safety in real-life situations away from the bedside.

Traditionally, neonatal providers have been terrible in providing adequate nutritional support to the sickest neonate who is unable to tolerate enteral feeds. Although the use of percutaneous lines and improved hyperalimentation preparations have enhanced the nutritional status of neonates, many continue to be in a state of cachexia while in the neonatal ICU. In the article “Nutritional Support of Very Low Birth Weight Newborns,” Ditzenberger discusses how inadequate nutrition may be responsible for postnatal growth restriction and a contributor to many of the chronic sequelae associated with very low birth weight infants. All neonates are expected to lose weight in the first days of life, much to their parent's disappointment, due to fluid shifts within the various compartments. Weight is a parameter that is tracked very closely and is key to medical management. A review of and recommendations for energy, fat, glucose, and protein intakes are presented. In addition, new research indicates that the neonatal ICU approach, which often encourages rapid growth of the tiny baby, may be laying the foundation for future adult onset of chronic disease such as central obesity and diabetes.

Stokowski discusses how advances in genetics and cell biology have positively impacted neonates born with endocrine dysfunction in “Congenital Adrenal Hyperplasia: An Endocrine Disorder with Neonatal Onset.” It is uncomfortable for everyone in the delivery room when an excited mother wants to know, immediately after delivering her baby, whether it is a boy or a girl, and no one is able to give an answer because the genitalia are ambiguous. Stokowski reviews the endocrine system with respect to the adrenal hormones to better understand the pathophysiology, manifestation, and management of the neonate presenting with congenital adrenal hyperplasia. Sexual differentiation and other disorders of sexual development, along with the intricacies of gender assignment, are also presented. Strategies are reviewed to help families cope with these emotionally laden anomalies. A case study highlights the key points in the article.

Retinopathy of prematurity (ROP) has been recognized as a complication of prematurity for many years. There was a time when the disorder led to the development of blindness in huge numbers of babies due to their being placed in incubators with oxygen, whether they needed it or not. The epidemic of blindness scared neonatologists so much that many did not provide any oxygen to premature infants, causing increased mortality in some who would have likely lived. We continue to struggle today with trying to understand the pathophysiology of ROP and with weighing the risks and benefits of providing supplemental oxygen to immature babies. Askin and Diehl-Jones present the history of ROP and the classification system that is used to grade the disease. Risk factors and the development of ROP as we understand it are discussed. Recommendations for screening neonates and strategies to prevent the development of ROP and its progression are reviewed. Current interventions and investigational therapies are also discussed.

Any intensive care stay is fraught with multiple invasive procedures that seem to be repeated endlessly until discharge from the unit. The neonatal ICU is no different, although there has been a distinct trend to scrutinize whether each procedure is really needed. The pain response has been well studied in neonates, leaving no doubt that these very vulnerable patients experience a tremendous amount of pain. Research and clinical experience also detail that the more premature the infant, the less coping strategies the baby has in its arsenal; therefore, a preterm neonate is thought to be more sensitive than a full-term neonate. Walden uses a case study to illustrate the gaps that continue to remain between evidence-based practice and research findings. She uses a unique style, the “Ten Commandments,” to drive home the message that all neonates need comprehensive pain assessment and management of that pain. Without evaluation of this fifth vital sign, health care providers are not practicing in an ethical manner or providing compassionate care.

I was fortunate to be invited to sit on a dissertation committee in which the doctoral candidate was examining how parents who made the decision to discontinue life support in the neonatal ICU felt about their decision years later. All members of the committee admitted that they could not read the results and discussion sections at the office because they were crying too much while reading what the parents said. Armentrout does a beautiful job of bringing the parent's perspective back to the neonatal health care provider in “Living with Grief Following Removal of Infant Life Support: Parents' Perspectives.” The parents tell how they made their decision, the things they would have changed, and how they would like the neonatal team to better support them. She discusses the differences between the mother and the father in grieving, the parents' feelings of isolation, and how difficult it is when close friends and family do not recognize the parents' loss. The parents share how a shift in life priorities occurred as they began to move forward from the intense grief.

Catlin and Volat stimulate thought and ethical debate in “When the Fetus Is Alive but the Mother Is Not: Critical Care Somatic Support as an Accepted Model of Care in the Twenty-First Century?” Situations in which brain-dead women have been maintained on life support for the purpose of allowing the fetus to mature to viability have resulted in successful births in most cases. Ethical issues surrounding care of the mother, the special needs of the fetus, and the emotional needs of the involved family and the nurses delivering that care are examined through the use of insightful questions. The importance of teamwork among the obstetric and adult intensive care providers is also emphasized.

As a researcher who investigates physiologic instability in neonates requiring intensive care, I feel that the institutional review board process is often overly burdensome. I will admit, though, that it is a necessary evil, because there are some who do not always maintain integrity of the research process. Thomas provides a wonderful overview of the research process as it specifically relates to the neonate in “When Neonatal ICU Patients Participate in Research: Special Protections for Special Subjects.” Neonates are a vulnerable population and cannot speak for themselves; thus, there must be a mechanism by which they have an advocate. Often, parents may not be able to seriously consider the ramifications of their baby being a research subject, given the emotions surrounding having a child in the neonatal ICU.

It has been a pleasure working with the article contributors for this issue and the past one. I sincerely thank the authors for taking the time to develop their work so that others may be stimulated by their thoughts.