Pediatric Annals

Aftercare of the High Risk Neonate

Rebecca Ichord, MD

Abstract

Survival of newboms with life-threatening illness has improved dramatically over the past 20 years, as shown by a 50% survival rate at 750 g birth weight today, compared with about 1,200 g birth weight in 1970. At the same time, the incidence of low birth weight in the United States has declined minimally over the past 30 years. ' Morbidity among low birth weight survivors is substantial. Hack2 reported that 33% of very low birth weight (less than 1,500 g) survivors were hospitalized in infancy, 40% had transient neuromotor abnormalities, and 10% had persistent neurosensory abnormalities. She found that most chronic medical sequelae resolve by the third year of life. Neurodevelopmental problems persist and dominate parental and professional concerns as these infants approach school age.

The spectrum of morbidity is not adequately conveyed by these numbers. Three trends in practice patterns are increasing the burden of care in the hospital, home, and community settings. These are: 1) third party reimbursement policies which encourage earlier discharge, 2) increasing numbers of chronically ill, technology-dependent infants, and 3) the growth of complex home-based medical care services. How do these trends affect the pediatrician? Earlier discharge often places greater demands on parents due to frequent complex therapies for an infant who is smaller, behaviorally less mature, and medically more vulnerable. These infants and their families need frequent contact with a pediatrician who, in turn, must be skilled in the outpatient care of the multiply involved, medically fragile infant. This often involves frequent office visits and phone calls to monitor growth, adjust dietary intake, manage respiratory symptoms, evaluate fevers and intercurrent symptoms, and provide parent guidance and reassurance. Similarly, technologies such as oxygen and home ventilators, constant infusion tube feedings, and patenterai nutrition are finding more widespread use in the home. Increasingly, the primary pediatrician is being asked to participate with, and in some cases to be the coordinator of, a team of diverse professionals supporting complex home-based technology.

INFANT CARE NEEDS: MEDICAL

The neonatal intensive care unit graduate has health care needs which are similar to those of a healthy newborn in general principle but differ in detail (see Table 1). These general care issues include health maintenance, episodic illness, chronic organspec i tic illness, and development.

Table

Most outcome studies have demonstrated that family and socioeconomic factors strongly influence the developmental outcome of high risk populations. Therefore, any strategy aiming to include the highest risk groups in early identification efforts must include family and social factors. Table 3 lists conditions carrying the highest risk for long tenti neurodevelopm ental sequelae, and suggests an approach for efficient use of limited developmental and educational services.

INFANT AND FAMILY: AVENUES OF CARE

Aftercare of the high risk neonate really begins before discharge. The family of each infant deserves individualized assessment of its capacity to cope with the care of a special infant: financial, emotional, parenting skills, and psychosocial supports for ongoing stress. Arrangements should he made in advance for sensitive and knowledgeable in-home services to ease the transition. The most effective arrangement starts with a home-care case manager, usually a nurse, who is the contact person and advocate for the family as they interact with diverse community resources such as visiting nurse agencies, respiratory care and home equipment companies, physical and occupational therapists, and multiple medical specialists. This case manager needs a partnership with a primary pediatrician in order to coordinate diverse and sometimes conflicting care needs. Above all, the family needs the unity of purpose and knowledge which can only he provided by the primary pediatrician.

1. McCormick M: The contribution of low birth weight…

Survival of newboms with life-threatening illness has improved dramatically over the past 20 years, as shown by a 50% survival rate at 750 g birth weight today, compared with about 1,200 g birth weight in 1970. At the same time, the incidence of low birth weight in the United States has declined minimally over the past 30 years. ' Morbidity among low birth weight survivors is substantial. Hack2 reported that 33% of very low birth weight (less than 1,500 g) survivors were hospitalized in infancy, 40% had transient neuromotor abnormalities, and 10% had persistent neurosensory abnormalities. She found that most chronic medical sequelae resolve by the third year of life. Neurodevelopmental problems persist and dominate parental and professional concerns as these infants approach school age.

The spectrum of morbidity is not adequately conveyed by these numbers. Three trends in practice patterns are increasing the burden of care in the hospital, home, and community settings. These are: 1) third party reimbursement policies which encourage earlier discharge, 2) increasing numbers of chronically ill, technology-dependent infants, and 3) the growth of complex home-based medical care services. How do these trends affect the pediatrician? Earlier discharge often places greater demands on parents due to frequent complex therapies for an infant who is smaller, behaviorally less mature, and medically more vulnerable. These infants and their families need frequent contact with a pediatrician who, in turn, must be skilled in the outpatient care of the multiply involved, medically fragile infant. This often involves frequent office visits and phone calls to monitor growth, adjust dietary intake, manage respiratory symptoms, evaluate fevers and intercurrent symptoms, and provide parent guidance and reassurance. Similarly, technologies such as oxygen and home ventilators, constant infusion tube feedings, and patenterai nutrition are finding more widespread use in the home. Increasingly, the primary pediatrician is being asked to participate with, and in some cases to be the coordinator of, a team of diverse professionals supporting complex home-based technology.

INFANT CARE NEEDS: MEDICAL

The neonatal intensive care unit graduate has health care needs which are similar to those of a healthy newborn in general principle but differ in detail (see Table 1). These general care issues include health maintenance, episodic illness, chronic organspec i tic illness, and development.

Table

TABLE 1Medical Issues in Aftercare of the High Risk Infant

TABLE 1

Medical Issues in Aftercare of the High Risk Infant

Good nutrition arid growth in the high risk newborn are fundamental to the resolution of chronic conditions such as bronchopulmonary dysplasia. Most seriously ill newborns experience weight loss postnatally with variable onset ot satisfactory growth rate, depending on the severity of early illness. Mo;· t low birth weight infants who ultimately "catch up" to normal percentiles do so in the first year of life. Nutrient requirements for catch-up growth depends on the presence and severity ot active chronic disease. For example, infants with chronic lung disease usually require 1 40 to 180 kcai/kg/day, while healthy growing prematures require 110 to 120 kcal/kg/day. Because of fluid restriction and/or inefficient feeding skills, the caloric density ot formula often must he increased to 24 to 30 cal/o: to achieve adequate calorie intake.

Low birth weight infants also have increased vitamin and mineral requirements the first 6 to 12 months ot life. Vitamin H supplements of 20 to 30 IU/ day have been recommended tor very low birth weight infants from birth to 6 weeks of postnatal age. Beginning at 6 to 8 weeks of age, iron supplements of 2 to 3 mg/kg/day are usually necessary for the tirst six months. Low birth weight infants need adequate doses ot vitamin D, sometimes combined with supplemental calcium. During the first year of life, periodic laboratory assessment of mini, ral status is necessary, including iron, calcium, phosphorous, total protein, prealbumin, alkaline phosphatase, hematocrit, and reticulocyte count, in order to judge the adequacy and duration ot dietary supplementation. ( Height, weight, and head circumference should be monitored frequently and plotted on standard growth curves, particularly during the first tew months after discharge and during exacerbations ot chronic illness.

Table

TABLE 2Common Causes of Feeding Problems fn High Risk Neonates

TABLE 2

Common Causes of Feeding Problems fn High Risk Neonates

Feeding problems are frequently sources of worry. In many nursery graduates there are multiple contributing factors, each of which needs separate consideration (see Table 2). Careful history and actual observation of a feeding are the first steps, followed by additional studies based on clinical suspicion. These may include milk scintigram for reflux, upper endoscopy, pulse oximetry with feeding, and oromotor and dysphagia evaluation. Treatment should be aimed first at rapid correction of severely malnourished states, and second at the promotion of functional oromotor and feeding behavioral skills. A multidisciplinary team approach may be needed in more severe cases.

The immunization schedule tor high risk newborns is essentially the same as healthy term intants. They should receive full dose vaccination at the appropriate postnatal chronologic age, not at the corrected age.4 Influenza and pneumococcal vaccines are recommended for infants with chronic lung disease.

Episodic illness in the high risk neonate causes significant morbidity. It may occur in the form of exacerbations of underlying chronic disease, such as shunt failure or a pulmonary exacerbation. It may be a common intercurrent illness which results in more severe symptoms because of the infant's compromised state, such as viral bronchiolitis in an infant with chronic lung disease, or gastroenteritis in an infant with a history of necrotizing enterocolitis. Thus, both the pediatrician and parents must be alert to more frequent and rapid progression of simple episodic illnesses into more serious conditions.

Minor surgical problems are common in high risk neonates. Inguinal hernias occur in a large number of low birth weight infants, which should be repaired to prevent the relatively high incidence of incarceration in this population.1* Other minor surgical problems include strabismus and cryptorchidism. Surgery in these infants requires special expertise by the anesthesiologist regarding the airway and respiratory problems.

Chronic organ-related illness takes a heavy toll in a small proportion of high risk neonates. An in-depth discussion of these problems is beyond the scope of this article and may be found in other excellent references.6 However, several points are worth emphasizing here. BroncKopulmonary dysplasia (BPD) represents A broad spectrum of clinical symptomatology.7 Its hallmarks are reactive airways and poor gas exchange, leading to symptoms of cough, tachypnea, wheezing, hypercarbia, and hypoxemia. Resolution depends on good nutrition, growth, and preservation of cardiac function. Many babies who appear adequately oxygenated in quiet awake states have significant desaturations during sleep and with feedings. Effective management strategies for BPD include medication (diuretics, bronchodilators, steroids), oxygen, maximizing nutrition, restricting fluids, avoiding exposure to infection, minimizing stress, and allowing for adequate rest. Periodic evaluation of electrolytes, continuous puise oximetry, chest x-ray and electrocardiogram can be helpful in monitoring treatment efficacy. The targets of therapy should include comfort level and growth, as well as strictly pulmonary symptoms. Severe chronic illnesses such as BPD and including seizure disorders, hydrocephalus, and short gut syndrome, often can best he managed hy the pediatrician who is in close contact with consulting subspecialists and well-organized home-care services.8

Figure. Screening strategy for high risk infants.

Figure. Screening strategy for high risk infants.

INFANT CARE NEEDS: DEVELOPMENTAL

High risk neonates are subject to the entire spectrum of neurodevelopmental morbidity. Major handicaps - including moderate to severe cerebral palsy and mental retardation, blindness, and deafness - may affect approximately 10% of neonatal intensive care unit graduates. These conditions cannot be diagnosed at the time of the nursery stay (except sensory deficits), but can be defined by 1 to 2 years of age. Minor handicaps including minor neuromotor dysfunction, language disorders, mild cognitive and perceptual deficiencies, and behavior disorders are usually evident in the preschool years, although their manifestations and functional impact evolve over many years.9 These minor impairments may be the precursors of learning disabilities, which cannot be diagnosed until school age. They may affect up to 40% of graduates of neonatal intensive care.10,11

There is considerable controversy regarding the role of programs aimed at mass identification and treatment of developmental disorders.12 Identification of a condition carrying an increased risk of developmental dysfunction is not equivalent to diagnosing an actual handicap. As seen in the Figure, identification is a multi-stage process, starting with screening the "at risk" population, and concluding with confirmation with developmental diagnostic methods by qualified experts. The screening techniques used by the pediatrician should be tailored to the practice structure and to the age groups and risk category of the infants. Tools with known validity and sensitivity for use by pediatricians include the Gessell Revised Developmental Screening Inventory, l! the Denver Developmental Screening Test,14 and Clinical Linguistic and Auditory Milestones15 for infants up to 2 years of age; and the Early Screening Inventory,16 and the Minnesota Preschool Screening Instrument17 for the preschool child.

Table

TABLE 3Risk Factors for Developmental Disorders

TABLE 3

Risk Factors for Developmental Disorders

Most outcome studies have demonstrated that family and socioeconomic factors strongly influence the developmental outcome of high risk populations. Therefore, any strategy aiming to include the highest risk groups in early identification efforts must include family and social factors. Table 3 lists conditions carrying the highest risk for long tenti neurodevelopm ental sequelae, and suggests an approach for efficient use of limited developmental and educational services.

INFANT AND FAMILY: AVENUES OF CARE

Aftercare of the high risk neonate really begins before discharge. The family of each infant deserves individualized assessment of its capacity to cope with the care of a special infant: financial, emotional, parenting skills, and psychosocial supports for ongoing stress. Arrangements should he made in advance for sensitive and knowledgeable in-home services to ease the transition. The most effective arrangement starts with a home-care case manager, usually a nurse, who is the contact person and advocate for the family as they interact with diverse community resources such as visiting nurse agencies, respiratory care and home equipment companies, physical and occupational therapists, and multiple medical specialists. This case manager needs a partnership with a primary pediatrician in order to coordinate diverse and sometimes conflicting care needs. Above all, the family needs the unity of purpose and knowledge which can only he provided by the primary pediatrician.

REFERENCES

1. McCormick M: The contribution of low birth weight to infant mortality and childhood morbidity. N Engl J Med 1985; 312:82-90.

2. Hack M: The wry low birth weighr infant: The broader spectrum of morbidity during infancy and early childhood. Dev Behav Ped 1983; 4:241-249

3. American Academy of Pediatrics Committee on Nutrition: Nutrition needs of low birth weight infants. Pediatrics 1985; 75:976.

4. American Academy of Pediatr: Report of the Committee on Infectious Diseases. ed 20. 1986.

5 Rescoria F: Inguinal hernia repair in the perinatal period and early infancy: Clinical considerations. J Pediatr Surg 1984; 19:832.

6 Taeusch H: Follow-up Managemet of the high Risk Infant Boston, Little-Brown, 1987.

7. 19th Ross Conference on Pediatric Research: Bronchopulmonary Dysplasia. Columbus, Ohio. Ross, Laboratories 1986.

8. Ahman L (ed); Home Care of the High Risk, Infant. Rockville, Md. Aspen System, 1986.

9. Kuchen W: Children of birth weight 1000 <1000g Changing outcome between ages 2 and 5 years. J Pediatr 1987: 100:283-288.

10. Sell E: Early identification of learning problems in neonatal intensive care graduates. Am J Dis Child 1985; 139:460-463.

11. Mayes L. Changing cognitive outcome in preterm infants with hyaline membrane disease. Am J Dis Child 1985; 139:20-24.

12. Shonkoff J: Early intervention for disabled infants and their families: A quantitative analysis. Pediatrics 1907; 80:650-658.

13 Knobloth II: A developmental screening invenntory for infants. Pediatrics 1966; 38:1095-1104.

14. Denver Developmental Screening Test, Denver. LADOCA Publishing Foundation.

15. Capute A: Clinical linguistic and auditory milestone scale: Prodiction of cognition in infancy. Dev Med Child Neurol 1986; iS:762-771.

16. Early Screening Inventory. New York. Teachers College Press.

17. Minnesota Preshool Screening lnstniment. Minneapolis, PlcMtiptive Instruction Center, Minneapolis Public Schools/Special Educanon Division.

TABLE 1

Medical Issues in Aftercare of the High Risk Infant

TABLE 2

Common Causes of Feeding Problems fn High Risk Neonates

TABLE 3

Risk Factors for Developmental Disorders

10.3928/0090-4481-19880801-11

Sign up to receive

Journal E-contents