You are in: eMedicine Specialties > Pediatrics: Cardiac Disease and Critical Care Medicine > Neonatology Follow-up of the NICU PatientArticle Last Updated: Apr 24, 2007AUTHOR AND EDITOR INFORMATIONSection 1 of 14
 
Author: Michael P Sherman, MD, FAAP, Resident Coordinator, Neonatal Education, Professor of Pediatrics, SIU School of Medicine; Professor Emeritus, UCD, Division of Neonatology Michael P Sherman is a member of the following medical societies: American Academy of Pediatrics, American Association of Immunologists, American Pediatric Society, American Society for Microbiology, and Society for Pediatric Research Coauthor(s): Glen P Aylward, PhD, ABPP, Professor of Pediatrics, Southern Illinois University School of Medicine; Division Chief, Developmental & Behavioral Pediatrics, Director, Center for Disorders in Development & Learning Center for Disorders in Development and Learning, St John's Hospital; Craig T Shoemaker, MD, FAAP, Chief of Pediatrics, Medical Director, Special Care Nursery, Division of Neonatology, Baylor University Medical Center at Dallas Editors: George Cassady, MD, Clinical Professor, Department of Pediatrics, Stanford University School of Medicine; Mary L Windle, PharmD, Adjunct Assistant Professor, University of Nebraska Medical Center College of Pharmacy, Pharmacy Editor, eMedicine.com, Inc; Arun K Pramanik, MD, Professor, Department of Pediatrics, Division of Neonatology, Louisiana State University Health Science Center; Carol L Wagner, MD, Professor of Pediatrics, Medical University of South Carolina; Ted Rosenkrantz, MD, Head, Division of Neonatal-Perinatal Medicine, Professor, Departments of Pediatrics and Obstetrics/Gynecology, University of Connecticut School of Medicine Author and Editor Disclosure Synonyms and related keywords: outcome of the neonatal intensive care unit patient, posthospital care of the NICU graduate, assessment and management of the NICU graduate, neonatal intensive care unit, prematurity, premature newborn, premature neonate, premature baby, preemie, micropremie, micropreemie, NICU discharge planning, neonatal discharge planning, vulnerable child syndrome INTRODUCTIONSection 2 of 14
 
This article reviews the follow-up care of infants discharged from the neonatal ICU (NICU) and includes 2 important updates. Second, neonates born today with major malformations survive, whereas just a few decades ago, the same neonates born with these birth defects died. In addition, pediatricians and family practitioners had less experience with advances in neonatal intensive care than they do now, and NICU graduates receive more immunizations and other preventive measures (eg, palivizumab to prevent infections with respiratory syncytial virus [RSV]) after discharge now than before. During today’s training, pediatric and family practice house staff have limited time to learn about the follow-up care of NICU graduates. The evaluation of preterm and term infants with complex conditions requires the involvement of professionals from multiple medical, psychological, and social-service subspecialties. Therefore, this article is intended to inform pediatricians and family practitioners who want to learn more about the follow-up care of NICU graduates. This article covers discharge planning and medical care of the NICU graduate, methods of assessing the neurodevelopmental outcome of the NICU graduate, and resources for assisting families of the NICU graduate. The follow-up of ELBW infants is emphasized because this population now makes up a large proportion of the NICU graduates (Cowett, 1989). ELBW infants are at highest risk of having physical, developmental, and/or behavioral disabilities. An outstanding and comprehensive monograph, "Follow-up Care of High Risk Infants," was published as a supplement to the November 2004 issue of Pediatrics. For additional information and for discussion about related topics, please see the Further Reading section near the end of the article. CRITERIA FOR HOSPITAL DISCHARGESection 3 of 14
Criteria for discharging infants from the NICU can be divided into 4 categories: (1) infants at high risk, (2) infants needing special healthcare and/or technical support, (3) infants at risk because of the home environment, and (4) infants at risk for dying in infancy. Each is discussed below. Infants at high risk Discharge criteria for infants born prematurely and other infants at high risk have changed in recent years. Absolute weight or postconceptual age criteria are no longer used to decide a patient's readiness for discharge. The new criteria used to decide the patient's readiness for discharge are based on physiologic and functional readiness and include the issues listed below.
Infants needing special healthcare and/or technical support With the emergence of managed care, early discharge of infants with active medical and/or surgical conditions is common (Speer, 1998; Escobar, 1999). Infants may leave the hospital with many unresolved issues, such as a need for nutritional assistance (eg, feeding by means of gavage, intravenous alimentation), for respiratory support ranging from supplemental oxygenation to assisted ventilation through a tracheostomy, and for maintenance of indwelling or external medical devices (eg, ventriculoperitoneal shunt, cardiorespiratory monitor). The PCP must know the risks of clinically significant neurologic morbidity or mortality associated with the home care of tracheostomies during infancy (Haffner, 2001; Edwards, 2004; Fiske, 2004). Tracheostomy care may also involve assisted ventilation at home. In this circumstance, care by the PCP should involve consultation with a pediatric pulmonologist. Parents usually do not anticipate complex home medical care for their infant at the beginning of a pregnancy. When the medical condition requires extensive care in the home, the parents may be in need of a respite to perform other family duties or to have some leisure time. Planning for respite care for the parents should be part of the discharge process. Infants at risk because of the home environment Problems of bonding between parents and the infant are reported with prolonged hospitalizations (Woodwell, 2002; Kaaresen, 2006). Whether the infant is born prematurely, has congenital defects, or has a chronic disease, the likelihood of its experiencing physical harm or neglect is increased. Other risk factors for an adverse outcome in the home environment are a low educational level, a lack of family help, an unstable marriage or relationship, and sporadic or no medical care during pregnancy. Infrequent family visits during the infant’s hospitalization are also associated with deficiencies in the care provided in the home. Use of illicit substances or alcohol abuse during pregnancy also increases the risk for an adverse medical or psychological outcome (Boukydis, 1999). This problem has resulted in the widespread use of foster homes for the care of NICU graduates. If the foster home environment is a transitional approach, the following aspects of care should be provided:
If an infant is to be discharged to a home where illicit substances were used, a home visit before discharge and many home visits after discharge are necessary to protect the infant's health and well-being. Child protective services must be involved continuously in the care and treatment of infants in this situation. Infants at risk for dying during infancy Home hospice care for neonates with lethal conditions (eg, trisomy 13, trisomy 18) has increased (Corr, 1992; Miller-Thiel, 1993). Little information exists regarding this type of care, and several factors are needed for its success (Leuthner, 2004). A multidisciplinary approach must be established before discharge. If available, skilled professionals experienced in the hospice care of infants should be present in the home. However, few professionals are trained to provide hospice care to graduates of NICUs. Daily home visits may be needed just after discharge and near the terminal event. Distress or discomfort must be alleviated promptly, if possible. Arrangements must be made for the family’s needs, including follow-up medical care of the infant and the process of bereavement if the baby dies. Social services and/or clergy must be involved in the infant undergoing hospice care at home. DISCHARGE PLANNINGSection 4 of 14
Each NICU should have a discharge-planning group comprising designated professionals. The members should include at least the following professionals: a discharge planner or case manager, 1 or more social workers, nursing representatives (eg, nurse manager, clinical nurse educator, neonatal nurse practitioners), physicians (always the attending neonatologist plus others), and community service representatives (eg, home health nurses, Medicaid case workers, protective services case workers, personnel from private or government-funded neurodevelopmental follow-up clinics). NICUs that maintain a high census and that care for high acuity patients may have other members, including dietitians, physical therapists and/or occupational therapists, respiratory care practitioners, and representatives from the NICU follow-up clinic. On occasion, surgical subspecialists, pediatric subspecialists, or the PCP may be invited to the meetings to offer advice regarding infants with complex problems. A busy office practice often precludes the PCP from attending these meetings. Nevertheless, PCPs should be given periodic reports on the progress of their future patients after every meeting. The time of day, the designated day of the week, and the frequency of the meetings associated with discharge planning depend on the needs of a given NICU. For NICUs with large populations, the frequency, day, and the time depend on having an optimal number of team members present. For small NICUs, formal discharge-planning rounds may be inefficient. Because of rules related to the protection of patients' information, certain participants (eg, Medicaid and protective services case workers) may need to discuss their cases first and then leave when their patients are not being discussed. Few published reports make recommendations about the discharge-planning process. One summary is the 1998 policy statement Hospital Discharge of the High-Risk Neonate—Proposed Guidelines authored by the AAP Committee on Fetus and Newborn. Caregivers in the NICU and the healthcare professionals who are receiving NICU graduates should familiarize themselves with this publication. The AAP has indicated 6 critical components of the discharge-planning process, as follows:
Each of these 6 components is reviewed below. Parental education The goal of this education is to ensure that the parents are capable and confident in caring for their infant at home. Each infant has unique needs, and the education program should be directed at those needs. Two or more caregivers in the home must receive this training. This training allows respite for the primary caregiver. Additional details of the process of parental education were outlined earlier. No matter how complex the problem, the appropriate educators must be identified to give the training. For extremely complicated care situations (eg, those in infants with a tracheostomy), parents should have a rooming-in experience before discharge occurs. This is probably a good practice for all families before they o go home with their infant, but it is especially important for infants who have ongoing, complex problems. Home visits by experienced home healthcare professionals and/or follow-up telephone calls are essential for the success of the transition process. Implementation of primary care The implementation of primary care includes more than just identifying a PCP within the first week of the patient's hospitalization. In and out of the hospital, primary care involves an assessment of the infant's nutrition and growth, immunizations, car and home safety, and neurodevelopmental outcomes(including hearing and vision). Evaluation of unresolved medical problems A list of unresolved problems must be developed during the patient's hospital stay, and this list must be made available to the PCP. Resolved problems should be identified at the time of discharge. Ongoing conditions should have been diagnosed completely, and a management plan for diseases that persist must be established at the time of discharge. The current treatment plan and all medications the infant is receiving should be conveyed to the home health professionals and the PCP before discharge. Development of a home care plan The AAP established guidelines (1995) for technology-dependent infants that are helpful in the discharge-planning process. Publications about the care and outcomes of NICU graduates requiring complex technology are limited (Berger, 1998; Doyle, 2003). The plan of care in the home should have the following elements:
PCPs must be aware of these elements even if they did not participate in their implementation. Identification and mobilization of surveillance and support services The ability of the primary caregiver and other family support members to deliver care must be assessed before discharge. Ongoing assessment of the caregiver's physical and emotional abilities to continue providing care at home must be established. Repeated in-home evaluations regarding the availability of supplies, medications, complicated technologies, and nutritional support must be started before discharge. Healthcare workers who provide ongoing home evaluations and who can identify new problems are essential for a favorable long-term outcome for the NICU graduate. Determination and designation of follow-up care Early identification of a PCP is important. In the ideal circumstance, the PCP reviews the records, examines the infant, and meets with the family before discharge. In the era of managed care, the busy office practice of a pediatrician or family practitioner may not allow for such a review before discharge. In some cases, the skills of the primary care provider are limited relative to the complex problems that the infant exhibits. Therefore, appropriate follow-up care with surgical and pediatric subspecialists is necessary. Most important among the subspecialist visits is a follow-up appointment with a neurodevelopmental specialist. Although such an appointment may be in the distant future, a list of scheduled and unscheduled (but anticipated) appointments should be made and given to the parents and PCP before discharge. Arrangements for follow-up appointments may be made locally, but this is not always possible. Some level II nurseries may be in relatively rural areas, and the infant still needs to return to the tertiary center for certain services (eg, ophthalmologic examinations, hearing assessments, developmental follow-up). In rural areas, home services may also be limited, which means that the PCP has additional responsibility in evaluating the transition to home care. Finally, it is the responsibility of the NICU staff to assess the performance of a home healthcare agency and of its workers' abilities to provide quality care to the infant who is technology dependent. If an agency's staff does not perform properly, they should be so informed. If the quality of care does not improve, alternative arrangements for care must be sought. HEALTHCARE MAINTENANCE OF THE NICU GRADUATESection 5 of 14
The major goals of the pediatrician or family practitioner who monitors an NICU graduate are the following:
This section mainly covers the assessment of growth and nutrition and the delivery of preventive care. Periodic examination of development is discussed in the Developmental Follow-up sections below. Another important aspect of healthcare maintenance of the NICU graduate is health supervision and anticipatory guidance. Assessment of growthThe first duty of the PCP is to accurately monitor the growth of the NICU graduate (Cooney, 1994; Trachtenbarg, 1998). Therefore, the patient's weight, length, and head circumference must be plotted on appropriate growth charts and evaluated over time. Growth should be plotted for infants who were born prematurely after it is corrected for the patient's gestational age at birth. Special growth charts now are available for this purpose (Ehrenkranz, 1999). Growth charts also exist for term infants hospitalized in the NICU (Lair, 1997). In infants who are born prematurely, weight gain and other growth parameters usually start accelerating by 40 weeks’ postconceptual age. Measurement and documentation of head growth, a predictor of future outcome (Gale, 2004 2006), is especially important in this high-risk population. This assessment is especially important when a history of a chromosomal disorder, a brain insult, or a metabolic disease is present. A group of preterm babies that need special attention are those weighing <1500 g at birth (very low-birth-weight [VLBW] infants). The NICHD Neonatal Research Network recently reported that 97% of VLBW infants and 99% of infants weighing less than 1000 g at birth (ELBW infants) had weights less than the 10th percentile at the postmenstrual age of 36 weeks (Lemons, 2001). This growth failure begins during the NICU hospitalization. It is now the focus of many providers who are concerned about the late consequences of this poor growth that occurs during a critical period of brain development. Growth failure may have many origins in NICU graduates (Cox, 2000; Hawdon, 2000). As noted above, infants weighing <1500 g at birth must undergo frequent assessments of growth. The PCP should know whether preterm infants or those small for gestational age (SGA) are gaining at least 20 g/d before discharge. If growth is <20 g/d, a plan should be in place before the patient is discharged from the NICU and communicated to the PCP, who should carefully follow up the patient's growth. A prospective study by the NICHD of infants who weighed 500-1000 g at birth showed that their growth in the NICU influenced subsequent neurodevelopmental and growth outcomes in positive or negative ways (Ehrenkranz, 2006). The PCP should be aware of their patient’s growth characteristics in the NICU. The type of nutritional support may also help in identifying infants at risk for growth failure. These infants include those who are breastfed, infants given special formulas, and infants receiving total parenteral nutrition (TPN) for >4 weeks or are still receiving TPN at discharge. Despite some increased risks associated with breast milk–related nutrition in ELBW infants (eg, osteopenia of prematurity), neurodevelopmental outcomes at 18 months of age are more favorable in breastfed infants than in others (Vohr, 2006). Infants requiring nasogastric tube or gastrostomy feedings after discharge are at significant risk for impaired growth. Infants may also be at risk for nutritional deprivation depending on their disease states. Common neonatal conditions for which an evaluation for growth failure is required include chronic lung disease of prematurity (CLD) (ie, bronchopulmonary dysplasia [BPD]), severe CNS injuries or birth defects, congenital heart disease, short-bowel syndrome, esophageal and intestinal anomalies, chronic renal disease, inborn errors of metabolism, and chromosomal and/or major malformation syndromes. To rectify the cause of growth failure, the PCP must understand its origins, especially in the very preterm infant (Hay, 2006). Many examples illustrate why growth failure occurs in term infants that graduate from the NICU. An infant with congenital heart disease may have growth failure because his or her feeding difficulties are associated with congestive heart failure and an increased work of breathing. Corrective surgery may be the only solution for this problem. An infant with severe perinatal asphyxia may be unable to suck and swallow because of brain injury. Such an infant may require a permanent gastrostomy (and gastric fundoplication) to ensure adequate nutrition. Even when this is accomplished, the brain insult still may result in poor growth secondary to hypothalamic and pituitary effects or other yet-undefined consequences of severe cerebral damage. A premature infant recovering from severe BPD may have reduced growth because of pulmonary disease, which increases the work of breathing. Severe chronic lung disease in the NICU graduate is commonly associated with gastroesophageal reflux (GER). The diagnosis of GER was recently reviewed (Lopez-Alonso, 2006). In infants with GER, alleviating esophageal pain with H2 antagonists or proton-pump inhibitors in conjunction with prokinetic agents may mitigate the problem and promote increased feeding volumes and weight gain. Convalescent infants who had severe necrotizing enterocolitis (NEC) may have an insufficient epithelial surface or a damaged mucosa that does not allow adequate absorption of nutrients from the gut. Persistent poor growth in these infants may require a return to partial parenteral nutrition. Graduates of the NICU often have accelerating growth patterns after discharge. This is particularly true for preterm infants (Theriot, 2000). Head growth frequently exceeds weight gain and linear growth. Careful attention must be paid to exclude posthemorrhagic hydrocephalus as the cause of rapid increases in head circumference. After ultrasonography demonstrates that ventricular size is stable or declining after intraventricular hemorrhage, the risk of posthemorrhagic hydrocephalus is small. This issue is generally resolved before the patient is discharged from the NICU. Controversy exists regarding when catch-up growth is complete for infants who were born prematurely, but many clinicians now believe that catch-up growth is not complete until 2.5-3 years of age. In some SGA infants, body mass may increase rapidly, but a substantial number have little catch-up growth (Hediger, 1998). These SGA infants should be referred to a pediatric endocrinologist because therapy with recombinant human growth hormone y may be useful in some. A current concern involves the rate of catch-upgrowth and its association with an increased risk of obesity and heart disease in later life (Lucas, 2005). In part, the pathophysiology of being a low-birth-weight infant and later adult disease is derived from the Barker hypothesis (Syddall, 2005). An emerging body of data is causing a reexamination of the best rate for catch-up growth and of the strategy to avoid the consequences of being a low-birth-weight infant (Lucas, 2005; Demmelmair, 2006). The benefits of breastfeeding appear to substantially affect adult diseases associated with the Barker hypothesis (Singhal, 2006). In any infant who is not approaching the lower percentiles of the curve or whose growth curve flattens or decelerates, the causes should be assessed. If improved nutritional support does not reverse the growth pattern or if diagnostic studies do not reveal an obvious cause, referral to an endocrinologist, gastroenterologist, and/or dietitian is indicated. Evaluation of nutritionGeneral assessment Evaluation of nutritional sufficiency includes more than a simple assessment of body measurements (eg, weight, length, and head circumference). The evaluation includes studying the patient's fluid and mineral intake, an appraisal of caloric and substrate consumption, and, at times, indirect measurements of proper body composition (eg, skin-fold thickness, certain biochemical determinations made by using blood specimens). A complete evaluation helps in identifying any excesses or deficiencies in nutrient consumption. The PCP also must monitor the route by which nutrition is provided. Parenteral nutrition, enteral nutrition, or both may be used to attain adequate nutrition. Inadequacies in delivering nutrients by either the parenteral or enteral route must be recognized. The PCP may be untrained or inexperienced in this type of nutritional evaluation. The role of follow-up care of the NICU graduate must often include a pediatric dietitian, and a specialized follow-up clinic may be needed for certain infants. When access to a follow-up clinic and a pediatric dietitian is limited, the PCP may need to use a home feeding diary and/or a nutritional assessment sheet to gather additional information (Theriot, 2000). In this manner, the PCP may be able to accurately measure the exact caloric intake and the composition of substrate that the infant is consuming. Prolonged intubation and repeated insertion of gavage tubes can result in aversion to oral feeding (Pinelli, 2005). Deviations from a normal suck and swallow response may include a tonic bite reflex, an abnormal tongue thrust, and/or a hyperactive gag. More important than these findings, and too often observed, is the presence of a dysfunctional suck, a swallow, and breathing pattern that results in hypoxemia and/or apnea during oral feeding. This problem is often observed in ELBW infants. Parental anxiety adds to the problem. In this setting, observation of infants by an occupational therapist or nurse specially trained to recognize feeding problems is an excellent method to make the diagnosis and treat these infants properly. Cineradiography of the suck and swallow mechanism often helps in this process. Diagnostic tests to exclude GER as a contributor to abnormal feeding behavior are also frequently necessary. The NICU team is responsible for making these assessments and for developing a treatment plan before discharge. The PCP must be thoroughly aware of this assessment to understand the pathophysiology of the disorder, and he or she must comprehend the likelihood of success with the therapy applied. Finally, stool passage and the composition of the stools may be useful in assessing the adequacy of nutrition. Abdominal distension and oily, mucoid, explosive, or watery stools should heighten the suspicion of epithelial absorptive problems in the intestine. Carbohydrate and protein intolerance (an inability to digest food or a true allergy) must be considered in infants with abnormal patterns of stool passage, and diagnostic tests are indicated. Referral to a pediatric gastroenterologist may be appropriate if test results do not indicate a diagnosis or if interventions do not alleviate the problem. Nutritional assessment begins with a complete history and physical examination (Bernstein, 1998). Evaluation of the patient's general health status, heart rate, breathing rate, temperature control, and fluid balance are parts of this examination. Also included are anthropometric measurements, including weight, length, head circumference, and sometimes skin fold thickness, which are plotted over time. In the first 3-4 months after birth, normal weight gain averages 15-40 g/d and then declines, reaching about 5-15 g/d by the age of 12-18 months. From a postmenstrual age of approximately 40 weeks until month 4 of postnatal life, weight increases proportionally more in infants who were born prematurely than in those who were born at term. Increases in weight versus length may differ in NICU graduates who are having problems with adequate nutritional intake, and a comparison of the 2 measurements (eg, length increasing faster than weight) can provide evidence of nutritional sufficiency. The rate of accelerated growth in preterm infants is still larger than that in term infants, but the magnitude is far less. In the months after preterm infants are born, the crown-heel length may incrementally increase by 0.8-1.1 cm/wk, whereas term infants gain a mean of 0.7-0.75 cm/wk. By the age of 12-18 months, the gain in length declines to 0.75-1.5 cm/mo. The largest frontal-to-occipital plane is used to determine the patient's head circumference. For preterm infants, the increase in head circumference is in the range of 0.7-1 cm/wk, whereas the increase in term infants averages about 0.5 cm/wk during the immediate postnatal period. Increases in head circumference of >1.25 cm/wk should suggest hydrocephalus. Increases in head growth more accelerated than these may be related to conditions other than posthemorrhagic hydrocephalus, such as autism or genetic or metabolic disorders. A rapid deceleration in head growth occurs by the age of 12-18 months, after which, the increase is only 0.1-0.4 cm/mo. During the first 3-6 months after discharge, the velocity of growth related to weight, length, and head circumference has been inadequately studied in NICU graduates. The reason may difficulties in establishing the values for healthy preterm or term infant. Investigators would need to address birth-weight categories, gestational ages, sex, race, nutritional methods, countries where the studies are performed, and ongoing diseases that affect growth. A study of infants with birth weights of 750-2500 g in Brazil showed substantially growth deceleration by 12 weeks of age (Anchieta, 2004). Ehrenkranz and colleagues (1999) reported on the longitudinal growth of hospitalized VLBW infants in the United States, but the duration of study was until or slightly after term gestation. Therefore, it lacked information about growth after hospitalization, which should be available for the PCP. Most infants gain weight and grow with an intake of 108 kcal/kg/d. Infants born prematurely usually require 110-130 kcal/kg/d for sustained weight gain and growth. For these preterm infants, the following simple equation may be used to calculate their increased needs: Daily intake = 120 kcal/kg X (ideal weight for actual height/actual weight), where both weights are in kilograms. In extraordinary circumstances, indirect calorimetry may be required to ascertain an infant's energy needs. These measurements include oxygen consumption, production of carbon dioxide, and elimination of urinary nitrogen. These techniques require the assistance of a tertiary care center. Specific evaluations Specific assessments of the NICU graduate include evaluations of fluid balance, the mineral content of the blood and bone, the patient's energy intake, and the nutrient composition what the patient consumes. Fluid balance is important in NICU graduates with serious pulmonary, cardiac, GI, and/or renal problems. Fluid restriction may result in poor growth unless the patient is fed high-caloric formula, fortified breast milk, or breast milk supplemented with formula intake to compensate. In the converse, excessive fluid may cause edema. The disease itself or diuretic therapy may affect the mineral content of the blood. Assessment includes not only a determination of blood electrolyte concentrations but also an a measurement of acid-base balance. Pulmonary or cardiac disease can be associated with clinically significant respiratory acidosis and renal compensation. Diuretic therapy may accentuate this problem. Diuretic therapy may also cause further disturbances in calcium and phosphorus homeostasis eg, low concentrations of total or ionized calcium), diminish plasma phosphorus content, and elevate alkaline phosphatase activity in the blood. These chemical findings in the blood frequently reflect osteopenia in preterm infants. Osteopenia of prematurity is a defined disorder of diminished bone mineralization often observed in VLBW infants. The disease can result in rickets or fractures of the ribs and long bones. If fractures occur, this cause must be distinguished from physical abuse. Osteopenia of prematurity has a complex etiology that includes rapid bone growth with inadequate intake or metabolism of calcium, phosphorus, vitamin D, and protein. Correction involves treating the specific deficiencies. Renal disease with sodium wasting, excess bicarbonate losses, and poor retention of calcium and/or phosphorus can additionally complicate the clinical picture. The optimal method of following up bone mineralization in preterm infants with birth weights <1500 g is unsettled and may involve biochemical analyses, dual X-ray absorptiometry (DEXA), and/or ultrasonography (Rigo, 2000; Yeste, 2004), but the PCP should be aware of the methods of assessment. Other deficiency states are observed in NICU graduates and include a lack of specific vitamins, iron and trace minerals, carnitine, essential fatty acids, and protein. These deficiencies are not discussed in detail here; however, specific deficiencies are covered briefly below. Most deficiencies are avoided with the use of preterm formulas and/or fortified breast milk. Improved fortifiers, if available and if used before and after hospital discharge, enhance biochemical components associated with growth and affect postnatal growth itself (Reis, 2000; Berseth, 2004; Arslanoglu 2006).
A prospective double-blind randomized controlled trial showed that a human milk fortifier enhanced the growth of preterm infants (Reis, 2000). Use of human milk fortifier may be incorporated into the postdischarge care of preterm infants. Hay and colleagues (1999) wrote an overview of the nutritional needs of ELBW infants. Delivery of preventive careHealthcare maintenance is the essential function of the PCP. Assessment of growth and nutrition is an integral part of that function. Other functions include education regarding safety concerns; prevention of infectious diseases by means of immunization; and evaluations of vision, hearing, and other aspects of neurologic development. Problems with infant-parent bonding are also the PCP's concern. The neurologic and emotional aspects manifest in NICU graduates are reviewed in subsequent sections of this article. Two important preventive measures may begin in the NICU. The first preventive therapy is immunization. To obtain current information about the immunization schedule for infants, see the 2006 AAP Red Book (Pickering, 2006), Immunization Information for Parents and Important Information for Clinicians from the AAP, Immunization Schedules from the CDC, or the 2006 Immunization Update: New Vaccines and Revised Recommendations from the AAP, Illinois chapter. The second measure is education regarding car-seat safety and the proper use of car seats. The PCP also has a responsibility to aid in home safely and to prevent crib death (eg, by means of Back-to-Sleep campaign, by advising families to avoid cobedding or sleeping). The PCP should review recent recommendations (Colson, 2006) and the success of the recommendations for supine sleeping (Moon, 2006). The PCP continues or starts immunizations during follow-up care. The practice of professionals who deliver in-hospital care of VLBW may lag behind current recommendations for immunizations (Davis, 1999). One reason for this lag may be the concern that apnea may increase within 72 hours after immunizations (Sanchez, 1997; Lee, 2006) or that febrile responses may occur (Ellison, 2005). The cardiorespiratory status of infants with chronic lung disease worsens for approximately 48 hours after immunization (Pourcyrous, 1998). Controversy exists regarding whether ELBW infants can respond to immunizations within 2 months of birth (eg, 2 mo after birth for an infant born at 23 wks of gestation, ie, postconceptual age of 31 wks). Some investigators believe that immunizations should be given at or after 35 weeks’ postconceptual age and that this timing enhances the immune response. PCPs must be aware of problems associated with the administration and the effectiveness of immunizations given to ELBW infants. Preterm and other high-risk infants may meet guidelines for the administration of palivizumab. This monoclonal immunoglobulin G is given intramuscularly to reduce the severity of RSV infections (Pedraz, 2003). In 2003, AAP published guidelines for prophylactic injections of palivizumab. In most communities, RSV season usually begins in late October or November and lasts until April or May. The PCP also should review car-seat safety during the initial office visit. Before infants are discharged from the NICU, their parents or guardians should be instructed about appropriate use of a car seat. Preterm infants should be placed in their car seat, and the absence of airway obstruction or apnea while they are seated should be ascertained before the leave the hospital. Health supervision and anticipatory guidanceReview of the patient's neurodevelopment is the PCP's primary task, and the provider must understand how the patient's physical and mental disabilities affect the parents and the family as a whole. The emotional well-being of the child and the family is critical to a successful life. The PCP coordinates care for patients leaving the NICU (AAP, 1996). He or she is also responsible for the follow-up care of any infant who has an abnormal result on a hearing screen or ophthalmologic examination before hospital discharge. Many states require that all infants undergo hearing screening before discharge. The PCP also has the responsibility of keeping track of referrals to subspecialists for the numerous problems that an individual NICU graduate may have. The PCP must ensure that healthcare insurance, whether it is funded privately or publicly, is available to the infant. The physician and the family must work together to obtain supplemental Social Security benefits based on the infant’s disabilities. In addition, the PCP must refer the infant to the proper community- and education-based services appropriate to the patient's disabilities. Finally, the PCP must ensure that supplies and services are continuously available to technology-dependent infants. Parents should be counseled regarding the sleeping position of their preterm or term infant. In its Back to Sleep program, the AAP recommends supine sleeping for term infants; this positing has significantly reduced rates of sudden infant death syndrome (SIDS). The risk of SIDS is increased in preterm infants (birth weight <2500 g) and SGA infants who sleep in a prone or lateral recumbent position versus the supine position (Oyen, 1997). Therefore, for preterm and term infants, "back is best" (AAP, Committee on Fetus and Newborn, 2003; Persing, 2003). Personal communication between the PCP and parents about their NICU graduate is essential to the physical and emotional well-being of the infant and family. Many questions are likely to arise before discharge, during the first office visit, and over the next months and years. Issues may include keeping the house warm, dressing the infant, allowing visitors, taking the infant outside, avoiding direct sun exposure, and flying to visit friends or family. Other issues may be more specific than these and related to infant's behavior or health. Samples questions include the following:
A predischarge meeting of the NICU staff and the family can help ease the transition home. That said, the PCP must realize that questions such as those listed above are common and may seem numerous. Many answers simply involve common sense. To the authors' knowledge no complete collection of the typical questions parents asked has been published. Therefore, few or no reference sources are available for PCPs. Practical experience is perhaps the only way to become comfortable in addressing many of these questions. Many concerns may emanate from the parents' perception that their child is vulnerable to a number of physical and intellectual challenges. This view may be obvious to both the PCP and the parents at the time of discharge. The PCP must recognize patients at risk of becoming vulnerable children because the parents feel guilt or are overprotective. This topic is important enough that it is covered specifically in The Vulnerable Child. Parents may wish to learn more about their baby's potential problems or disease than what time allows in the NICU or in the physician's office. The parents may seek information about community, state, or national resources to help their infant or child. Tertiary sponsored follow-up clinics can also be resources, as can governmental or private agencies involved in specialized care or rehabilitation. Helping parents to gain access to information or resources is an important function of the PCP. Resources for Parents and Caregivers provides resources that may be useful to parents. ASSESSMENT AND MANAGEMENT OF MEDICAL DISORDERS IN THE NICU GRADUATESection 6 of 14
Medical disorders in NICU graduates cover a wide range of disease states. The conditions covered in this article include disorders uniquely encountered in infants who were born prematurely (Trachtenbarg, 1998). The care of infants with major malformations, chromosomal disorders, syndromes, or sequences, disorders of metabolism, and infectious diseases are covered in other articles in the Pediatrics section of the eMedicine journal. Anemia of prematurity Anemia of prematurity is one of the most common and important problems that the PCP must address in the NICU graduate. After birth, hemoglobin concentrations decrease more rapidly and more severely in premature infants than in term neonates, and the lowest hemoglobin levels are observed in ELBW infants (Widness, 2000). It cannot be stressed enough that the PCP must know the patient's hemoglobin value, hematocrit, and reticulocyte count at the time of discharge. He or she must be aware of the sign and symptoms of anemia and manage it appropriately. In a hospital-based study, liberal use of blood may have improved neurologic outcome compared with restricted transfusion ( Apnea and bradycardia of prematurity The National Institute of Health and Human Development (NICHD) reviewed issues related to apnea of prematurity (Finer, 2006). The severity of apnea and bradycardia in prematurely born infants is inversely proportional to their gestational age. Causes of apnea are immature central regulation of breathing; obstruction due to immature airway reflexes; and/or delayed coordination of sucking, swallowing, and breathing responses. However, the PCP must consider other diagnoses when apnea and/or bradycardia are the presenting signs or symptoms after discharge. Such conditions include, but are not limited to, profound anemia, severe GER, hypoxia or bronchospasm related to CLD, infection (especially RSV infection), malfunctioning or infection or a ventriculoperitoneal shunt, and seizures. Apnea can recur in preterm infants after they are hospitalized or after they receive general anesthesia for a surgical procedure (eg, inguinal hernia repair). Apnea and bradycardia of prematurity may occur at home, though the infant may have been free of apneic episodes for more than a week before discharge (Darnall, 1997). In this instance, the PCP may have to consider rehospitalization if an acute life-threatening event has occurred. If no cause for the apnea is found and if the infant is not receiving a methylxanthine, use of theophylline or caffeine may be considered in conjunction with a cardiorespiratory monitoring. Some premature infants may be discharged with cardiorespiratory monitoring and one of these medications. Much discussion has focused on whether home monitoring helps in preventing death in preterm infants (AAP Committee on Fetus and Newborn, 2003). Because of advertising in the lay media, parents may request or demand home monitoring. Clinicians must explain to such parents that home monitoring does not prevent SIDS, though monitoring for apnea and bradycardia might avert the sequelae of hypoxia-related events (AAP Committee on Fetus and Newborn, 2003). Late causes of apnea, as described above, should be excluded before an infant is discharged with home monitoring. For infants discharged with home monitoring and methylxanthines, the PCP may wish to have the infant outgrow medication during monitoring. Regardless of whether the methylxanthine is weaned in this manner or formally stopped, monitoring must be continued for at least 1-2 weeks before its cessation is considered. One criterion for stopping home monitoring is a 4- to 8-week period of no clinical apnea, no cyanotic episodes, and no history of monitor alarms. Some PCPs may wish to download and review event recordings before stopping monitoring. A scheme for judging the cessation of home monitoring has been published (Spitzer, 1992). The AAP (2003) suggests that home monitoring for a preterm infant with apnea of prematurity may be stopped by 43 weeks postmenstrual age. Infants who were born at 22-24 weeks of gestation may not be ready for discharge until this postmenstrual age. A study in Chronic lung disease of prematurity Initially called BPD, CLD and its manifestations have changed in recent years (Bancalari, 2000). The incidence of CLD of prematurity, or the new BPD, is higher than 60% among infants who weighed 500-600 g at birth (Bancalar, 2000; Lemons, 2001), and its incidence approaches 100% in those who weighted <500 g at birth. Investigators recently reviewed the pathophysiology of the new BPD (Chess, 2006; Coalson, 2006), and a comprehensive overview has been published (Jobe, 2006). Factors that define CLD include a typical radiographic appearance of cystic emphysema and fibrosis or subtle changes of diffuse interstitial edema and a requirement for inspired oxygen at the 28th day of life or the 36th week of postconceptual age. The preferred definition may be an oxygen requirement at 36 weeks' postconceptual age. The infant presenting in the PCP's office while receiving home oxygen therapy and multiple medications is at high risk for developing cardiopulmonary complications after discharge. To prevent cor pulmonale, intermittent or persistent hypoxemia and clinically significant hypercarbia must be prevented after discharge. A pediatric pulmonologist, in addition to the PCP, should monitor infants discharged home with considerable need for oxygen and substantial renal correction of respiratory acidosis. Home oxygen therapy is a safe and cost-effective treatment, and it may reduce complications (eg, cor pulmonale) in infants with CLD (Halliday, 1980; Thilo, 1987). Oxygen therapy also appears to facilitate the growth of infants with BPD (Hudak, 1989). In the PCP's office, oxygen saturations must be monitored with pulse oximetry. The level of inspired oxygen required to prevent hypoxemia indicates the severity of disease and whether the patient's condition is improving. Adjunctive therapy for BPD may include inhaled bronchodilators and/or steroids, oral corticosteroids, and diuretics (commonly furosemide or a thiazide plus spirolactone). Management of CLD involves oxygen, medications, at times complex technologies, and always attention to superb nutrition (Bancalari, 2005; Biniwale, 2006; Greenough, 2006). Issues have arisen regarding whether corticosteroids inhibit normal growth of the lung and brain and whether it causes future pulmonary or neurodevelopmental disabilities. Grier and Halliday (2005) propose an appropriate use of corticosteroids in severe BPD that may be life saving and that may also minimize adverse responses in the developing brain. Infants receiving diuretics to treat CLD require periodic evaluation of their electrolyte status. Furosemide therapy for CLD predisposes these infants to nephrocalcinosis. The PCP may need to screen patients for nephrocalcinosis by performing serial renal ultrasonography, by assessing calcium-to-creatinine ratios in the urine, or by examining the urine for erythrocytes (microscopic hematuria). No current therapy effectively resolves nephrocalcinosis in preterm infants. Prevention may be the key. Furosemide should be used only when this diuretic is proven effective. When nephrocalcinosis is present, every attempt should be made to stop furosemide or other drugs that cause excessive urinary excretion of calcium. Nephrocalcinosis spontaneously resolved in many, but not all, infants in the first year of life. Infants who have CLD may require more than 120-150 kcal/kg/d for weight gain because of their increased work of breathing (Biniwale, 2006). Therefore, either breast milk with added fortifier or a formula with high energy density may be needed for nutritional support. Infants with CLD may also need restrictions in fluid intake, a therapeutic strategy that may further impair their growth. On occasion, infants with CLD may be discharged with home monitoring, which may include pulse oximetry for infants who have the most severe illness. GI diseases The 2 prominent intestinal problems encountered in premature infants discharged from the NICU are GER and complications arising from NEC. Reviews of GER have recently been published (Jadcherla, 2005; Pacilli, 2005) and NEC (Henry, 2005; Lin, 2006). GER can be suspected in premature and term infants who have repeated regurgitation or emesis after feedings, apnea after feedings, fussiness or painful crying during or after feedings, arching of the head and neck during or after feedings, a nasogastric or orogastric feeding tube, or rumination. Each of these signs or symptoms takes on additional important if the child's growth is poor. GER has been associated with esophageal or duodenal atresia, diaphragmatic hernia, brain injury due to hypoxic-ischemic encephalopathy (HIE), prematurity whether CLD is present or absent, and many other neonatal conditions. Recent data suggested that GER has no role in apnea of prematurity (Molloy, 2005), whereas an endoscopic study indicated that GER may be responsible for laryngeal edema, apnea, and bradycardia (Vermeylen, 2005). Testing to confirm GER has been the subject of contentious debate (Lopez-Alonso, 2006). Diagnostic tests for GER include contrast-enhanced studies of the esophagus and upper GI tract, radiolabeled scanning after feedings, monitoring of esophageal pH (optimally done with dual high and low probes), and esophagoscopy with or without biopsy. Before a reliable pH probe test can be performed, medications that raise gastric pH must be withdrawn for several days (eg, 2-4 d). In the ideal situation, the patient's gastric pH should be known before a pH probe examination is performed. Some pediatric gastroenterologists recommend adding hydrochloric acid to the feedings during pH probe testing to avoid false-negative results due to high gastric pH. The success rate of medical therapy for GER is less than ideal. Treatment may include prokinetic agents (eg, metoclopramide, erythromycin), H2-receptor blockers or proton-pump inhibitors, thickened feedings, and positioning to facilitate gastric emptying. One study indicated that GER was worst when preterm infants were treated with metoclopramide. Data suggest that erythromycin 1.5-2.5 mg/kg given every 6 hours may effectively treat GER in some preterm infants (Costalos, 2001; Oei, 2001). However, reports suggest that erythromycin therapy increases the risk of hypertrophic pyloric stenosis. Erythromycin-induced hypertrophic pyloric stenosis occurs when the antibiotic is intravenously administered at therapeutic doses rather than at the low oral doses used to treat Thickened feedings and positioning have had mixed success in treating GER in neonatal clinical trials. Thickened feedings effectively decrease GER (Vanderhoof, 2003; Wenzl, 2003); therefore, a resurgence in their use has occurred. Although GER may be a life-long problem in some infants (eg, term infants with profound brain injury due to HIE), premature infants generally have self-limited disease that improves as the gastroesophageal sphincter and gastroduodenal motility matures. Infants with severe GER associated with HIE may be candidates for treatment with gastric fundoplication. A pediatric gastroenterologist should collaborate with the PCP in caring for infants with severe GER. For graduates of the NICU who have had NEC, the PCP must be alert for later problems. Complications of NEC include a need for ostomy care, malabsorption, intestinal dysmotility, a need for parenteral nutrition despite enteral feedings, cholestasis, infections of the ascending biliary tract, biliary calculi, late partial or complete bowel obstruction, and short-bowel syndrome. The prognosis of patients with short-bowel syndrome is guarded ( The PCP must be diligent in recognizing growth failure, fluid imbalance, and electrolyte abnormalities in infants with GI disease. Scarring after neonatal GI surgery can cause partial or complete bowel obstruction after discharge. Repeated emesis, particularly if it is bilious, and/or a sudden onset of abdominal distension must always be investigated. Polymicrobial sepsis may be another indicator of partial or complete bowel obstruction after NEC or GI malformations. When short-bowel syndrome necessitates parenteral nutrition at home, catheter or gut-related bacteremia is a major risk factor and must be suspected, even if the patient has only subtle signs of infection (eg, irritability, low-grade fever, apnea). A pediatric gastroenterologist should monitor infants who have clinically significant complications secondary to NEC and other GI diseases. CNS disorders The most common and serious CNS disorders that may be present in premature infants at the time of discharge are posthemorrhagic hydrocephalus, postmeningitic hydrocephalus, periventricular leukomalacia (PVL), and seizures. These disorders place the NICU graduate at high risk for poor long-term neurologic outcomes. Infants with these problems should be followed up in the NICU follow-up clinic. The discussion below is limited to CNS complications that most commonly affect infants born prematurely. Other common conditions affecting the CNS of NICU graduates include developmental defects in the brain and/or spinal cord. These conditions are discussed in other articles in the eMedicine journal. Despite past beliefs, ELBW preterm infants with grade I subependymal or II intraventricular hemorrhage may have poor neurodevelopmental outcomes (Patra, 2006). Grade III intraventricular or IV intracortical hemorrhage is associated with the least favorable neurodevelopmental results, but the degree of prematurity and the presence of chorioamnionitis may also be major contributors to severe long-term disabilities. Intraventricular hemorrhage may lead to posthemorrhagic hydrocephalus. In turn, intracortical hemorrhage causes cerebral infarction and may culminate in cerebral or cerebellar porencephaly. Porencephaly and posthemorrhagic hydrocephalus are among the most devastating CNS events in premature infants (Shankaran, 2000). The risk of these conditions is inversely proportional to gestational age. For example, 35% of infants with birth weights of 500-600 g have severe intracranial hemorrhage (Lemons, 2001). If posthemorrhagic ventricular dilatation occurs after intraventricular hemorrhage does, it usually is apparent on cranial ultrasonography within 2-3 weeks. Hemorrhagic cerebral events are occasionally observed in term neonates. Such hemorrhage in term infants carries an ominous prognosis. Infants who have had intracranial hemorrhage must always be monitored in neurodevelopmental follow-up clinics. They should also be referred to community services because rehabilitation is frequently necessary. Rapidly progressive posthemorrhagic hydrocephalus may require permanent placement of a CSF shunt (Whitelaw, 2001). If a ventriculoperitoneal shunt is needed, the PCP must monitor the NICU graduate for shunt infections or malfunctions. Malfunctions are typically due to an occlusion of the proximal or distal cannula with a subsequent increase in intracranial pressure. Poor feeding, vomiting, irritability, lethargy, sleepiness, apnea, and seizures may be signs and symptoms of shunt blockage. If fever or a septic appearance is also present, the PCP also should suspect shunt infection and meningitis. The PCP should monitor the patient's head circumference for rapid or slow growth. PVL is caused by an ischemic infarction of the white matter, most commonly that adjacent to the lateral ventricles. PVL can be observed in either preterm or term infants. The condition is routinely identified on cranial sonograms as echogenic areas in the periventricular white matter. Injuries in these areas evolve into cysts (De Vries, 2004). PVL may originate before or after birth. Antenatal or intrapartum hemorrhage and severe placental disease (eg, chorioamnionitis) have been associated with PVL (Bashiri, 2006). Postnatal events leading to PVL include sepsis and CSF infections, intraventricular hemorrhage, life-threatening apnea and bradycardia, and/or cardiorespiratory arrest. PVL is highly associated with subsequent neurodevelopmental disabilities, particularly cerebral palsy (motor dysfunction of infancy or spastic paresis). Persistence of cysts is known to increase the risk of severe neuromotor abnormalities. PVL is always a reason to schedule appointments in a neurodevelopmental follow-up clinic. Affected infants should also be referred to community services that provide early intervention and rehabilitation. In preterm infants reveal, cranial sonograms show reduced growth of the corpus callosum during the patient's NICU stay, and patients are at increased risk of psychomotor delays and cerebral palsy ( A history of neonatal seizures is another finding associated with long-term psychomotor or neuromotor handicaps (McBride, 2000). Reasons for neonatal seizures include hypoxic-ischemic injury, direct cerebral trauma, intracranial hemorrhage, metabolic abnormalities, malformations, and infections. Neurodevelopmental outcomes after neonatal seizures are clearly related to the etiology of the seizures. However, in some patients, a specific cause is never determined. When known, the cause may be predictive of the ease or difficulty with which the seizures can be controlled with anticonvulsants. Phenobarbital is the mainstay of anticonvulsant therapy for neonatal seizures (Rennie, 2003). However, recently published proceedings of a neurology group on neonatal seizures recommended that clinical trials be conducted to evaluate phenobarbital therapy (Clancy, 2006). Controversy exists regarding the duration of treatment for neonatal seizures partly because of concerns that anticonvulsants may hinder brain development. Among infants without signs and symptoms, and in the absence of electroencephalographically recorded seizures, pediatric neurologists may recommend discontinuing anticonvulsants before the patient's discharge or shortly thereafter. Before anticonvulsants are withdrawn, an electroencephalogram must be obtained to exclude subclinical seizures. A neurologist should evaluate any NICU graduate who has persistent or difficult-to-control seizures. These infants should also be monitored in neurodevelopmental follow-up clinics and referred to appropriate community services. A common neurologic condition associated with neonatal seizures is HIE. Maternal intrapartum conditions that commonly result in profound HIE are placental abruption, uterine rupture, and prolonged cord compression. HIE is a devastating event that most often affects term neonates. If infants have profound damage (often in association with a burst-suppression pattern on initial electroencephalograms and an abnormal MRI), extensive home care and community services may be required. The PCP must monitor the patient for recurrence of seizures many months after anticonvulsants are discontinued. The PCP has the responsibility for coordinating the complex care infants with HIE require. Eye problems ROP is an important problem that the PCP must monitor. One of the most devastating complications of preterm birth is blindness secondary to ROP. This condition is complex in its pathophysiology. Certain clinical conditions, such as infections, increase the risk of ROP. Its association with oxygen therapy is long known, but this causal relationship is complex. One firmly established etiologic factor is the degree of prematurity. Therefore, the infants at highest risk are those who were born prematurely with an ELBW. The AAP recently published new guidelines for screening for ROP (AAP, 2006). However, some neonatologists take a view more conservative than of the AAP and perform screening in large or relatively mature preterm infants, especially if they received prolonged oxygen therapy and/or assisted ventilation. A subspecialist trained to recognize neonatal retinal diseases must perform the screening for ROP. The subspecialist must continue to examine the patient and make recommendations for follow-up examination of the neonatal retina until it is fully vascularized. Complete vascularization usually occurs by 44-48 weeks after conception, but it occasionally takes longer than this. Screening examinations are important because, if retinal detachment (ie, threshold disease) is a risk, the infant may be referred for laser therapy of the retina to prevent it. Retinal detachment can also occur relatively late in life. Again, this is particularly common in premature ELBW patients. Preterm infants who have had evidence of ROP must also be screened for refractive disorders and for amblyopia at 6 months after discharge, at 2-3 years of age, before they begin school, during grade school, and during adolescence when rapid growth is occurring. Infants with a history of ROP are at increased risk for myopia. In later life, glaucoma may also be more common in these infants than in others. When a PCP examines infants younger than 1 year, he or she must assess for strabismus. Hearing problems The incidence of hearing loss increases in NICU graduates compared with the general population of well neonates. Many factors can contribute to such hearing loss, including hypoxia, certain drugs used alone or in combination, and infections. Silent congenital, symptomatic congenital, or postnatally acquired cytomegaloviral (CMV) infection is highly associated with hearing loss in later life. The hearing loss caused by CMV infection may progress over time. Most intensive care units in the All NICU graduates must undergo a hearing evaluation before leaving the hospital. A number of devices are now available for this purpose. The PCP should be informed at discharge whether the patient passed the hearing screen. If the patient did not, he or she must be referred to an audiologist. DEVELOPMENTAL FOLLOW-UP: GENERAL CONCEPTSSection 7 of 14
The primary goals of perinatal care are to decrease infant mortality, enhance health-related quality of life, and improve neurodevelopmental outcomes (O’Shea, 2003). Advances in neonatal intensive care have improved survival rates of high-risk neonates, but they have not necessarily decreased morbidity. Methodologic problems in follow-up studies have produced conflicting data about the sequelae of being born early (Aylward, 2002). As the total number of survivors at potential risk for neurodevelopmental morbidity increases, many clinical research questions with major ramifications on medical care have evolved. These questions can be answered only by performing long-term follow-up studies (AAP, 2004). Although neurodevelopmental outcomes are increasingly used to determine the efficacy of medical interventions in infants born preterm, long-term follow-up studies are infrequently done because of cost and subject dropout. The bias of neurodevelopmental data is that they are not as precise as radiographic or biologic measurements. In addition, confusion occurs because of the frequent disconnections between adverse perinatal experiences and later outcomes, because of the moderator and mediator effects of socioeconomic status and other environmental influences, and because of the long time lag necessary to complete longitudinal assessments (Aylward, 2002; O’Shea, 2003). Besides initial biologic risks, perinatal interventions designed to address these risks may substantially affect later development. Therefore, extended follow-up is critical to identify possible negative effects that a medical intervention or the standard of care might have on the child’s brain and that are not obvious in the first years of life. This point was clearly demonstrated in the use of postnatal steroids to treat chronic lung disease and in late visual impairment and developmental delays with the use of oxygen (Finer, 2000; Msall, 2000). Of interest, standardized guidelines about follow-up services for high-risk infants in tertiary care centers are lacking despite the requirement for approved neonatal fellowship training programs to include experience in follow-up clinics and the increasing number of centers involved in networks. In the monograph produced after a NICHD–National Institute of Neurological Disorders and Stroke (NINDS) workshop on follow-up care of high-risk infants (AAP, 2004), the 2 primary areas of responsibility for neonatal follow-up programs are surveillance and research. Surveillance involves monitoring medical care during hospitalization and serial evaluation of health and neurodevelopmental outcomes after discharge. This process is necessary to audit NICU interventions, monitor important quality indicators for the individual neonatal unit, summarize center-specific outcomes for selected conditions (eg, intraventricular hemorrhage, ROP), and summarize annual outcome data to be combined and used in policy decisions. Provision of feedback to the family and the PCP at each serial evaluation and appropriate referrals are in line with the medical home concept. Follow-up research data are necessary to evaluate the long-term effect of medical interventions and to identify previously unidentified adverse risks.Areas of concern include social issues and neurologic, cognitive, behavioral, physical, health-related quality-of-life, and functional outcomes. This discussion is restricted to cognitive and neuropsychological outcomes, which are sometimes considered neurodevelopmental. Outcome studies have primarily emphasized the incidence of major disabilities such as moderate-to-severe mental retardation, sensorineural losses (eg, hearing loss, blindness), cerebral palsy, and epilepsy. Babies born with low birth weight (LBW, <2500 g) have a 6-8% incidence of developing these major disabilities. Those born at very low birth weight (VLBW, <1500 g) have a 14%-17% incidence, whereas ELBW babies (<1000 g) have a 20-25% rate. Therefore, as birth weights decline, disabilities increase (Hack, 1995; Bennett, 1997). In comparison, major disabilities occur in 5% of infants born full term. These rates have remained relatively constant over the last decade. The nature of impairment is changing, with notable problems being found in survivors without the disabilities just described (Aylward, 2002 and 2005). Recognition of this change may be related to lengthened follow-up, refined assessment techniques, and improved survival rates (Aylward, 2005). High-prevalence, low-severity dysfunctions (Aylward, 2002, 2003, and 2005) appear to be increasing, particularly in small, premature infants (Wood, 2000; Marlow, 2005). These abnormalities include learning disabilities, borderline to low-average intelligence quotients (IQs), attention-deficit/hyperactivity disorder (ADHD), spe |