KEY POINTS
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The care of a sick infant must continue into childhood, and families must be guided just as diligently after discharge as they were during intensive care.
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A continuum of care after discharge, involving dedicated multidisciplinary teams, is important for early intervention and meticulous follow-up.
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During developmental surveillance, uniform application of one well-validated tool is important for consistency in early intervention and/or referral. Several such test batteries are available, including the Bayley Scale of Infant Development, Hammersmith Neonatal Neurological Examination, Hammersmith Infant Neonatal Neurological Examination, Alberta Infant Motor Scale, and/or Milani-Comparetti Motor Development Screening Test, all of which show a fairly high degree of correlation. There is also a need for early evaluation of vision and of hearing and language.
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Timely referral and interprofessional integration with occupational health, speech, and physical therapy are needed.
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The availability of supportive services has been shown to be important not only for high-risk infants but also for the well-being of the parents and other family members.
Infants discharged from the neonatal intensive care unit (NICU) are at higher risk of medical and neurodevelopmental disorders and will benefit from well-defined clinical care protocols on “care after discharge.” There are several important considerations: (1) there is a need for a process map to address the complex needs of the infants and families sent home from NICU; (2) parental dissatisfaction has been noted in both the developed and the developing parts of the world on access to guidance and care after discharge from a relatively structured NICU protocol life; and (3) most parents encountered delays in diagnosis, referral, and inappropriate communication of information. In this chapter, we seek to outline the core principles in designing a structured follow-up program for babies discharged from the NICU. Several indicators for the quality of care are available that can be used as a template to organize medical and developmental care of babies discharged from the NICU. There is a need for follow up-schedules and services tailored for individual infants based on their needs, and the systems also need to be adapted as per regional resources.
Ensuring Continuity and Compliance After Discharge From the NICU
Healthy child and adult outcomes must be planned from birth. The team coordinating developmental assessment and therapy must participate in care from day 1 of the baby’s life in the NICU. This early relationship is beneficial to both the family and the development coordinators. The developmental services must be placed at par with lifesaving intensive care.
A development coordinator must be a part of NICU service rounds. The development services team gathers information on the education, occupation, and economic and emotional status of the caregivers and the medical team records the perinatal biologic risk factors, both in the same blue book. Through a modular “early parent participation program,” parents are guided to the need and processes of developmental services. This includes introduction to the NICU and lactation support in the first week of the NICU stay; by the second week, when the baby is medically stable, the development coordinator introduces to the family the need for and protocols of retinopathy of prematurity (ROP), hearing, and neurosonogram screening. During the next sessions, the need for long-term follow-up including assessment of refraction, early language milestones, and early detection and mitigation of motor, cognitive, behavioral, and scholastic disabilities is shared. This ensures that the family is informed, before discharge from the NICU, about the need for and logistics of follow-up until school entry. The role and financial feasibility of development therapists into the NICU team from the start have been demonstrated in the Baby Bridge program in the United States. Nurse-driven guided participation that included updates on the condition of the baby and education at periodic intervals in the NICU showed significant improvement in parent satisfaction, and perceived stress was less. By using principles of quality improvement, there was a clear increase in compliance with follow-up and early referral, the most critical step in minimizing disability (loss of function and participation in activities of living) in children with early pointers to brain injury.
Role of Developmental Follow-Up Services
Many allied health professionals (occupational therapists, speech therapists, and physical therapists) work together with the intensive care team to ensure intact neurodevelopment of the vulnerable infant. In the NICU, there are several important considerations:
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Early intervention in the NICU—ensuring core principles of developmental supportive care with early participation of the parents;
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Education of parents on the need for screening and follow-up;
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Evaluation of neurobehavior of the baby in the NICU and recognition of suboptimal behaviors after discharge;
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Developmental surveillance and growth monitoring after discharge from the NICU;
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Early initiation of developmental therapy for motor, cognitive, and behavior disorders and speech delay;
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Coordination between specialists, therapists, and family physicians during postdischarge follow-up;
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Coordination of routine medical care and immunization;
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Establishment of links with community resources;
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Recognition and timely initiation of parental stress; and
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Recognition of financial and social issues.
Such a multidisciplinary follow-up team may include a developmental pediatrician, therapist, or nurse with at least 1 year of exposure in an NICU.
Developmental Surveillance—After Discharge From the NICU
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Address medical concerns and assess parents’ coping as independent caregivers. The first question asked is “How are you both? Mother (father) and baby?” Healthy parenting has a definite impact on infant behavior and future neurodevelopmental outcomes ( Fig. 93.1 ).
Fig. 93.1
(A) Early smiling. A 19-day-old infant smiles for her parents. (B) Localizing sound. A 3-month-old infant responds to interesting sounds by looking in the direction of the sound. (A, Reproduced with permission and minor modifications from Feldman and Chaves-Gnecco. Developmental/behavioral pediatrics. In: Zitelli and Davis’ Atlas of Pediatric Physical Diagnosis , 3, 71–100. B, Reproduced with permission and minor modifications from Scalise-Smith and Umphred. Umphred’s Neurological Rehabilitation , 2, 15–50.e6.)
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Quickly review neurodevelopment in the NICU: the risk stratification chart; predischarge checklist; growth of head and weight; neuroimaging; screening reports for ROP, hearing, and thyroid levels; and neurobehavior and examination before discharge from the NICU.
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Assess clues to suboptimal neurobehavior: choking during feeding (with loss of tone, going blue or pale, or violent coughing), very slow feeding (taking much longer than 20–30 minutes to finish a feed), clinical pointers (abnormal sucking in preterm infants ), excessive crying, and a poor sleep-wake rhythm.
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Assess growth and nutrition: head growth (serial monitoring) and trajectory in relation to weight/length, weight gain ( growth [weight] is an indirect measure of neurodevelopment and has associations with ROP), and specific nutrients (iron, iodine, and zinc have a possible influence on development).
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Perform formal tests to assess neurobehavior of the NICU baby at term age for preterm babies and in the first weeks for a term-born baby: the best tool should be accurate in prediction of disability (need for intervention), should be easy to perform, and should be locally adapted ( Fig. 93.2 ). Several test batteries are available; however, uniform application of one well-validated tool is highly important for consistency in early intervention and/or timely referral. These tests include the Bayley Scale of Infant Development (BSID), Hammersmith Neonatal Neurological Examination, Hammersmith Infant Neonatal Neurological Examination (HNNE), Alberta Infant Motor Scale, and/or Milani-Comparetti Motor Development Screening Test, all of which show a fairly high degree of correlation. There is also a need for early evaluation of vision and of hearing and language.
Fig. 93.2
Normal Tone in a Full-Term Neonate .
(A) Flexed resting posture. (B) Traction response. (C) Vertical suspension. (D) Horizontal suspension. (Reproduced with permission and minor modification from Schor. Neurologic evaluation. In: Nelson Textbook of Pediatrics , ch. 608, 3053–3063.e1.)
The Hammersmith Neonatal Neurological Examination can be performed with minimal training and requires only 10 to 15 minutes to complete. The General Movement Assessment is another well-known, accurate tool for the prediction of cerebral palsy (CP). The “nonintrusive” test can be performed without touching the infant (only a video needs to be shot, by even the parent at home); however, it does require some training and experience (several hundred babies) before a reliable report can be made. The NICU Network Neurobehavioral Scale, with 128 items, can provide an elaborate assessment of neurobehavior but requires training and time.
Beyond Early Infancy
The most accurate tools must be reserved for research purposes or for developing an individualized childcare plan. In busy office practice settings, most pediatricians may not be able to evaluate high-risk children for want of time and not having enough knowledge of formal development assessment tools; compliance was less than 50% in high-risk children in a study from New Zealand. The reasons cited by pediatricians include lack of time and clear protocols.
Neurologic examination using a standardized test battery is important for early diagnosis of CP. In Australia, studies showed that the BSID, HNNE, general movements assessment (GMA) Test of Infant Motor Performance scales, and imaging were all able to diagnose CP very early (before the age of 5 months) in infants discharged from the NICU. Community-level screening must use tools that are easy to administer and can be completed in a short duration. Many tools have been evaluated for community screening in low- and middle-income countries.
Vision
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Parents must be guided to ensure follow-up if the screening for ROP is not completed at the time of discharge from the NICU.
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Infants need timely referral if they show poor face regard, nystagmus at any age, or poor social smile by 2 months’ corrected age. Those with squint (strabismus) persisting after the age of 4 months also need evaluation.
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Infants need screening for refractory errors (starting at 6–9 months of age and then annually until 6 years of age).
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Cortical visual dysfunction, such as with poor fixation, following, or in interaction with parents despite a “normal” eye report, needs evaluation.
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The role of an experienced optometrist who can prescribe spectacles or eye patches or provide other forms of intervention cannot be overemphasized.
Hearing and Language
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Infants discharged from the NICU are at a higher risk of sensorineural hearing impairment; they must be screened by brainstem evoked audiometry even if they have a normal otoacoustic emissions evaluation. Sequential evaluation with a brainstem evoked response evaluation may not be sufficient in infants who fail the otoacoustic emissions evaluation. Timely access to a hearing aid or cochlear implant may be very important for hearing and global development.
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Parents and pediatricians must be educated about early language milestones to detect any communication disorder.
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Speech/articulation disorders result from anatomic/coordination disorders of sound production; language disorders include problems arising from difficulty with hearing, comprehension at the cortical level, and expression.
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Clinicians should evaluate the environment (opportunities to speak) at home before looking for biologic causes of language delays.
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Importantly, language disorders can be a part of global developmental delay (cognitive disorder). A timely referral to a speech and language therapist is important.
Referral: Timely Specific Interventions and Interprofessional Integration
Developmental surveillance must be coupled with referral to scientifically proven therapies. Use of early intervention services is hugely dependent on the primary care physician’s knowledge of scope and potential benefits, the access to resources, and interprofessional coordination.
Role of Pediatricians
Pediatricians have a very important, central role in the care of these at-risk infants. They are the guides on nutrition, monitoring for faltering growth, immunization, early detection of illnesses that can worsen developmental milestones, timely referral to specialists, and coordination of care for complex medical issues ( Fig. 93.3 ).
