Dr. Ruchi N. Nanavati*
Professor & Head, Department of Neonatology, Seth G. S. Medical College & KEM Hospital, Mumbai. *
Last two decades have witnessed a steady improvement in the quality of perinatal care in India. Close Neonatal - Obstetric collaboration, successful implementation of NALS programmes, better understanding of pathophysiology and management of neonatal problems, technological advances in neonatal care and above all the concern of pediatricians to enhance the intact survival of newborn babies have contributed to this increased survival of high risk newborns. At the same time they have also created a new population of infants who previously would not have survived. Our challenge as neonatal caregivers is to cultivate an environment and interventions that optimize the care rendered to this fragile and still developing population not only during the hospital stay but also after discharge. These stable preterm infants and infants with specific problems have unique follow up needs and often require utilization of special medical and educational resources. Efforts therefore must be made for these 'NICU graduates - a new generation of High Risk Infants' so that they achieve maximum growth and neurodevelopmental potential and enjoy good quality of life.

Who are high-risk infants?
A high-risk infant is defined as any newborn or young infant who has a high probability of manifesting in childhood a sensory or motor deficit or mental handicap. Ideally every NICU graduate must be seen in high-risk clinic. However, selection criteria must be developed by an institution depending upon the strength of staff available.

The following group of high-risk babies is followed up in our institution:
  • High risk LBW (Birth weight <2000 gm) babies: These babies once stable receive Kangaroo Mother Care at our institution, are discharged early and followed up regularly at Kangaroo Mother Care center.
  • Neurological disorders - perinatal asphyxia, IVH, meningitis, persistent seizures, neurologically abnormal on discharge.
  • Ventilated neonates
  • Neonatal Sepsis
  • Hyperbilirubinemia requiring exchange transfusion

Many of bigger babies can be transferred to Well Baby Clinic (WBC) on demonstrating reasonable normalcy on follow up.

Why do the High Risk Infants need follow up?
These high-risk infants cannot be seen in busy WBC. They need close monitoring and special care as they face different problems mentioned below which require timely detection and early intervention to achieve optimal results.
  • Feeding problems
  • Growth retardation
  • Neurodevelopmental handicaps - Hearing and vision problems, delayed motor and mental development, cerebral palsy and mental retardation
  • High morbidity due to anemia, osteopenia, infections, seizure, etc
  • High post neonatal mortality

Who should follow up these high-risk neonates?
Because the focus of follow-up care is enhancement of individual and family function, follow up team must include individuals with expertise in multiple areas. Ideal core team working towards welfare of a child consists of pediatrician, developmental psychologists, occupational therapist, public health nurse and medical social worker. Pediatrician acts as the coordinator of the team and should be preferably from NICU with whom mother are familiar. Developmental Psychologist should be capable of administering longitudinal development tests. Occupational therapist is needed to detect and treat tone abnormalities. Public health nurse is responsible for advice regarding feeding, immunization, neonatal care and family planning. Social worker is the most important member of the team who takes care of humane aspects, allays fears, anxieties and makes home visits and should be involved right from NICU. The mother must feel that the entire team is working towards the welfare of her child. What counts the most is the teamwork.

When to follow up?
First follow up visit should be within first three days after discharge to ensure smooth transition from nursery to home environment. Subsequent visits are advisable twice or thrice weekly in babies with birth weight < 1500 gm and once or twice weekly in babies with birth weight > 1500 gm till adequate weight gain is ensured. Monitoring should be intense in first three months and can be then relaxed gradually. Neuromotor and Neurodevelopmental assessment is done at scheduled visits - at term (corrected age), 6 weeks, 3 months, 6 months, 9 months, 12 months, 2 years, 3 years, 4 & 5 years. High Risk Clinic (HRC) can be held daily or every alternate day. It should preferably be held in the afternoons when mothers are comparatively free from housework.

How to follow up?
Before evaluating the growth and development of preterm infant, it is essential to correct/adjust the age for prematurity. (Corrected age = Chronological age - No. of weeks born prematurely). i.e. A 3 months old baby (chronological age) who is born 6 weeks prematurely is actually 6 weeks old (corrected age). This baby should be assessed developmentally as per 6 weeks norms and not that of 3 months.

Appointment dates as per corrected age must be given on discharge from NICU itself. Each regular visit should include:
  • Monitoring of Growth and Nutrition
  • Neurological examination including milestones
  • Management of medical problems
  • Advice on breastfeeding, complementary feeding, immunization and neonatal care
  • Anticipatory guidance to patients - parents should be made to understand the problems of neonates, treatment required, importance of follow up and prognosis

Special scheduled visits should in addition include:
  • Neuromotor assessment by Amiel Tison / INFANIB method for early detection of abnormalities of tone
  • Neurodevelopmental assessment by Bayley Scale of Infant Development (BSID) - Baroda norms or Developmental Assessment Scale for Indian Infants (DASII) to measure behavior of infants and children in 4 major fields - motor, language, adaptive, and personal social behavior.
  • Neurosensory assessment: Ophthalmic evaluation: Indirect ophthalmoscopy at 4-6 weeks chronological age in babies < 1500 gms or < 29 weeks gestation. Repeat if abnormal or till retinal vasculature is complete. Optometry at 2 months CDOB to find out astigmatism and myopia
  • Neurosensory assessment: Auditory evaluation - Clinical evaluation for hearing followed by screening by BERA or Oto Acoustic Emission at 2 mths CDOB. If abnormal, complete evaluation including diagnostic BERA, impendence audiometry, and free field audiometry is warranted. Behavioral audiometry is done if screening facilities not available.
  • Neuroimaging assessment: USG, CT, MRI as required
  • Neurophysiologic assessment: EEG if indicated
  • Early intervention therapy as and when required. The success of the early intervention program depends upon co-operation of parents and effective follow up care. Record keeping - Each baby in follow up clinic is given special high risk card of different cold for easy identification with follow up number.

What is early intervention?
Early intervention consists of identifying a baby who already has or is at potential risk for development a handicapping condition, and subsequently providing remedial measures to lessen its effects.

Early intervention programs are community based and offer multidisciplinary services for children from birth to age 3 including physical therapy, early childhood education, social services, and parental support groups.10 Physical or occupational therapy is required for infants with tone abnormality. At our institution we provide Bobath Neurodevelopmental Therapy. Bobath Therapy normalizes the muscle tone by inhibiting pathologic tonic reflex activity and by repetitive facilitation of normal, higher integrated righting and equilibrium reactions in their proper developmental sequence. The mother is the bet therapist for the child and her involvement is of paramount importance in EI programme. Infants with sensorineural handicaps require coordination of appropriate clinical services and developmental programs.

Is early intervention effective?
Yes. Compensatory mechanism exists for all cerebral functions and this plasticity of brain is encouraged by stimulation and early intervention. "Recent studies in Neurophysiology have proved that synapses if not the neurons are regenerable and neurotransmission can be improved by selectively stabilizing one type of impulse at the expense of others." This modifiability of brain at the molecular level forms the basis of early intervention in high-risk infants.

Thus, follow up programs help to optimize health outcomes for NICU graduates. The whole purpose of having expensive high technology NICU is defeated if there are no follow up services. These are absolutely essential so that small, fragile survivors of expensive NICU can achieve their maximum developmental potential. Follow up services also provide feedback for improvement of medical care in the NICU.
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