Most infants who develop neurodevelopmental disability (NDD) are normal on examination at birth.
Surveillance for NDD must start with neurologic examination in the neonatal intensive care unit and continue through childhood, because early diagnosis and intervention may be beneficial.
A tailored care plan should guide healthcare professionals and parents to best practices that support intact outcomes from birth to childhood.
Estimation of the risk of NDD is based on the severity of perinatal factors; promotion of early and guided parent participation; optimization of nutrition, such as with the use of mother’s own milk (such interventions should be evaluated with anthropometric follow-up, with head growth interpreted in the context of weight and length centiles); infrastructure changes and training of staff, including physicians, nurses, and therapists (occupational, physical, and speech) to promote developmentally sensitive care; early screening for retinopathy of prematurity, hearing, hypothyroidism, and neurosonographical abnormalities; and standardization of a protocol-based discharge planning process.
Except for a small proportion of babies with genetic disorders, preterm babies (or other sick babies) are born “normal.” Most neurodevelopmental disorders (NDDs) seem to be acquired due to severe medical morbidities that necessitate intensive care, an experience that, despite best efforts, is quite unlike the in-utero environment. Providing a child the opportunity to achieve full potential is the prime responsibility of perinatal healthcare professionals. Now that neonatal care has grown “beyond survival,” the priorities have moved to the intactness and quality of survival (good neurodevelopment outcome).
Neonatal intensive care unit (NICU) graduates have high rates of NDDs, and many of these disorders (poor scholastic performance, behavioral issues, and adaptation to society) are more frequent than cerebral palsy, blindness, and deafness put together (disabilities that are measured in our current protocols). Efforts to improve the disruptive NICU environment with developmentally supportive care (DSC), combined with continued surveillance for NDDs through childhood, would be logical. Early detection of suboptimal neurodevelopmental performance deviating toward an NDD, and timely institution of DSC, will very likely improve outcomes.
The pursuit for a perfect diagnostic tool to predict NDDs in the early neonatal period may not be the best approach. The aim of early detection is to identify at-risk infants who may benefit from early intervention, to prevent rather than confirm the presence of NDDs. Early referral and scientifically appropriate therapies with good interprofessional coordination must be offered as a seamless care plan to parents before discharging the infants from the NICU.
The search for suboptimal behaviors starts at birth and continues even after discharge from the NICU; this is collectively called as “follow-up of NICU graduates.” The earlier an at-risk infant can be identified, the greater the likelihood of a good outcome without an NDD may be. In the NICU, the care providers are constantly focused on preventing mortality in an infant being cared for with multiple life-support systems. The availability of well-organized, validated algorithms for management of respiratory supports, circulation, fluid and electrolytes, nutrition, jaundice, and infection control ensure minimum errors. Now, we need to develop similar, meticulously developed care bundles for early detection, referral, and intervention to optimize neurodevelopment. To optimize DSC practices and surveillance alongside medical care, we have developed a checklist model in our NICU that we call the “blue book,” which begins on the first postnatal day and continues through discharge ( Fig. 92.1 ). The “follow-up” after discharge into childhood will be discussed in the next chapter. In the following sections, we propose a simple process map, as a time-line checklist, that will help care-providers to incorporate neurodevelopment follow-up with medical care.
Days 1 to 3 of Life
Step 1: Assign Risk of NDD Based on Perinatal Factor Severity
The severity of a perinatal risk factor has a greater association with NDDs than its mere presence. The lowest gestations (<28 weeks), a need for extensive resuscitation (chest compression/medications), symptomatic hypoglycemia (seizures), prolonged ventilation, or abnormal neurosonogram (ventriculomegaly, periventricular leukomalacia [PVL] or grade 3 intraventricular hemorrhage [IVH]) were found to be independent risk factors in a study that included babies born at <34 weeks. Babies with two or more of these risk factors were noted in 12% of the population and had higher risk of an NDD at 1 year of age (17% versus 4%) than did those with one or none of these factors. This intuitive model of risk assignment allows a large proportion of NICU babies to be sent back to a community pediatrician. The risk-stratification tool was evaluated in a small sample of 225 babies, and multiple perinatal factors were evaluated. The study also had limitations innate to retrospective studies and has not been evaluated for external validity. However, the simplicity of the model clearly supported by biologic plausibility allows constructing regionally adapted risk-stratification strategies. The potential risk factors for NDD are arranged in ascending order of severity across the rows. If any of the risk factors is assigned to the high-risk category (right column), the baby becomes a candidate for intense follow-up and early intervention.
Of course, all NICU babies are at risk of neurodevelopment deviation and should be offered DSC. However, it is particularly important to identify the babies at highest risk. This can help the medical teams and parents prepare and act timely. This reduces the bulk of the workload on the specialist follow-up service, allowing better resource use. An equally important benefit of stratification to a relatively lower risk group is reduced emotional drain and socioeconomic burden on the family. Babies previously considered as low risk may have pointers to NDDs that evolve during follow-up; they must be referred by the community (family) pediatrician to specialized follow-up services.
Table 92.1 may be adapted to suit the regional needs of the clinical service. Tertiary-care NICUs may use the model that follows.
|≤10th centile for gestation
|Antenatal risk factors
Death of MC twin
|Resuscitation at birth
|Chest compression, medications
|Shock requiring inotropes
PDA requiring medical/surgical treatment
|>7 days of invasive ventilation
Inhaled nitric oxide
Need for high-frequency ventilation
|Bilirubin-induced neuronal damage
|Exchange transfusion for severe hyperbilirubinemia
|Encephalopathy (any cause) lasting >24 hours
Step 2: Early Parent Participation (Enriched Environment)
Parents must participate in the care of sick babies in the NICU from the start. The father must visit and touch the baby immediately after admission to the NICU, and the mother must participate as soon her health permits. They must have unlimited access to the baby. They must be empowered as partners in DSC through structured education and training.
Multiple studies have demonstrated the most obvious fact—that parents are critical to the healthy development of a baby, and from the start! ( Fig. 92.2 ). Strangely, the role of parents in many NICUs is still limited to seeing the baby during the visiting hours. Family-integrated care aims at minimizing parent-infant separation. Better breast milk feeding rates, appropriate growth, and lower parent stress are consistently demonstrated in the family-integrated care (FIC) model of care; each of these have definite positive influences on neurodevelopment. In a large, multisite randomized controlled trial conducted in Australia, Canada, and New Zealand, parents participated at least 6 hours a day in care of stable (no or low respiratory support) babies born at less than 33 weeks. A decrease in anxiety and depressive symptoms in infants proved that the presence of parents mitigates the negative influences of pain associated with diagnostic and therapeutic procedures and stressful environments. Also, parents and families who were allowed FIC experienced less strain.