This document discusses the importance of follow-up care for high-risk newborns after discharge from the NICU. It outlines that follow-up should include regular medical examinations to monitor growth and development, screening tests, and neurobehavioral assessments. Follow-up care is most intensive for high-risk infants born prematurely or with very low birth weight, and can involve multiple specialists. The long-term goal is to identify any disabilities or delays early and provide intervention to prevent or reduce impairments.

1. NDFU
DR PRAMAN

2. India - witnessed a steady improvement in the quality of perinatal care
As per NNPD 2002-3 –
◦ 89 % survival of the 14.5 % preterm babies
◦ 70 % survival of 3.4 % VLBW babies
INTRODUCTION

3. Neonatal - Obstetric collaboration,
Successful implementation of NALS programs,
Better understanding of pathophysiology and management of neonatal problems
Technological advances in neonatal care
Above all -- concern of pediatricians to enhance the intact survival of newborns
INCREASED SURVIVAL

4. Cerebral palsy remained quite unrelenting
neuro-sensory impairment (blindness and deafness)
Cognitive & learning disabilities
behavioral problems like ADHD and depression
To NOTE: Timely and appropriate intervention can prevent or modify many of
these disabilities
INCIDENCE OF SEVERE DISABILITIES

5. “Still lack of knowledge among neonatal specialists &
primary health care providers, lack of coordination among
health care providers and lack of parent understanding of
need for follow up”
WHY NEED

6. Surveillance: To provide a continuum of specialized care to sick babies discharged from
NICUs
Bench marking: Auditing of perinatal care practices: Long term follow up will
enhance understanding of association between risk factors, therapies and intact survival.
Data base: Helps in anticipatory counseling of parents/ health planning:
IMPORTANCE OF FOLLOW UP CARE

7. Identify at-risk infants:
 biological risk
 Interventions
 social/environmental risk
WHO NEEDS FOLLOW UP?
At
Risk
Gestational
age and
Birth weight
NEC, NNJ
Invasive
ventilation,
Postnatal
steroid
Neonatal
sepsis &
meningitis

8. 1. Severity of perinatal risk factors
2. Interventions required at birth & during in NICU
3. Demographic factors of the family
4. Resources of the follow up service
DETERMINANTS OF LEVEL OF FOLLOW UP

9. 1. Babies with <1000g birth weight and/or gestation <28 weeks
2. Major morbidities such as chronic lung disease, intraventricular hemorrhage, and
periventricular leucomalacia
3. Perinatal asphyxia - Apgar score 3 or less at 5 min and/or hypoxic ischemic
encephalopathy
4. Surgical conditions like Diaphragmatic hernia, Tracheo-oesophageal fistula
5. Small for date (<3rd centile) and large for date (>97th centile)
6. Mechanical ventilation for more than 24 hours
7. Persistent prolonged hypoglycemia and hypocalcemia
HIGH RISK

10. 8. Seizures
9. Meningitis
10. Shock requiring inotropic/vasopressor support
11. Infants born to HIV-positive mothers
12. Twin to twin transfusion
13. Neonatal bilirubin encephalopathy
14. Major malformations
15. Inborn errors of metabolism / other genetic disorders
16. Abnormal neurological examination at discharge

11. 1. Babies with weight – 1000 g- 1500g or gestation < 33 weeks
2. Twins/triplets
3. Moderate Neonatal HIE
4. Hypoglycemia, Blood sugar <25 m/dl
5. Neonatal sepsis
6. Hyperbilirubinemia > 20mg/dL or requirement of exchange transfusion
7. IVH grade 2
8. Suboptimal home environment
MODERATE RISK

12. 1. preterm, Weight 1500 g - 2500g
2. HIE grade I
3. Transient hypoglycemia
4. Suspect sepsis
5. Neonatal jaundice needing PT
6. IVH grade 1
MILD RISK

13. LOW RISK
 Pediatrician / primary care provider
 Screen for deviation in growth and development
Moderate risk
 Neonatologist and developmental pediatrician
 Developmental pediatrician
 Developmental therapist
 Radiologist
 Ophthalmologist
 Audiologist
 Physiotherapist
 Social worker
 Dietician
WHERE SHOULD THE BABY BE FOLLOWED UP

14. HIGH RISK:
 Neonatologist: supervise and screen
 Pediatric neurologist
 Geneticist
 Occupational therapist
 Speech therapist
 Endocrinologist
 Pediatric surgeon
 Orthopedician

15. Discharge summary should describe
 the prenatal and perinatal risk factors,
 neonate's hospital course and (and therapies)
 frequency of follow up required
 type of tests needed
RECOMMENDATIONS:

16. Pre-discharge
◦ Medical examination
◦ Neurobehavior and Neurological examination
◦ Neuroimaging
◦ ROP screening
◦ Hearing screening
◦ Screening for congenital hypothyroidism
◦ Screening for metabolic disorders
◦ Assessment of parent coping and developmental environment
AN ACTIVE SURVEILLANCE IS NECESSARY

17. Discharge should be planned well in advance so that the mother can be counseled
adequately.
PRE-REQUISITES FOR FOLLOW-UP

18. Should ideally begin as soon as the baby is admitted in the nursery.
Criteria should be fulfilled before discharging a high risk infant:
1. Hemodynamically stable; able to maintain body temperature in open crib ·
2. On full enteral feeds (either breast feeding or by paladai/spoon)
3. Parents confident enough to take care of the baby at home ·
4. Has crossed birth weight and showing a stable weight gain for at least three
consecutive days; i/c/oVLBW, weight should be at least 1400 gm before discharge.
DISCHARGE PLANNING

19. 5. Not on any medications (except for vitamins and iron supplementation)
6. Ideally preterm babies should be off caffeine/ theophylline therapy for at least five
days to make sure that there is no recurrence.
7. Received vaccination as per schedule (based on postnatal age).
8. These criteria can be individualized to meet the infant and family needs.

20. Regular counseling sessions should be done before discharge.
Advice regarding
· Temperature regulation – proper clothing, cap, socks, Kangaroo mother care etc.
· Feeding – type and amount of milk, method of administration, and nutritional
supplementation, if any.
· Prevention of infections – hand washing, avoidance of visitors, etc.
· Follow-up visits – where and when
COUNSELING PRIOR TO DISCHARGE

21. Danger signs – recognition and where to report if signs are present
Vaccination – schedule, next visit, etc
Special needs – e.g. next visits for ROP screening.
If possible the family should be provided with the telephone number of the health care
provider e.g. on-duty doctor in case the family needs to consult for infant’s illness.

22. “neonates must be followed till at least one year age (follow up
into school years is desirable)” ..NNF
FOLLOW UP

23. 1. Head circumference
 Most important and simple tool
 Static / dropping centile of OFC in relation to
length centile – predictor to NDD
1. MEDICAL EXAMINATION

24. 2. Growth
 weight and length potted on growth chart
 Compare discharge & Follow up values
 Poor growth points toward NDD or Medical problems
 Preterm babies use special growth chart for preterm babies

26. 3. Other common anticipated medical problems
 Hip examination
 dysmorphism
 Signs of IU infections
 neuro-cutaneous markers

27.  Of great value in predicting subsequent abnormality
 Tool –
 Hammersmith neonatal neurological screener
 neurodevelopmental risk examination,
Amiel-Tison
2. NEUROBEHAVIORAL & NEUROLOGICAL EXAMINATION

28. isolated neurological signs  greater frequency with abnormal outcomes
NAPI (neurobehavioral assessment of preterm infants)
◦ BETWEEN 32 TO 37
NEUROBEHAVIORAL ASSESSMENT
ASSESSMENT DONE FOR
1. Motor development & vigor
2. Scarf sign
3. Popliteal angle
4. Alertness & orientation
5. Irritability
6. Vigor and crying
7. Percentage sleep ratings
8. Quality of spontaneous movements,
9. Crying
10.Visual behavior

29. Severity of neonatal neurological insult in neonatal period as per Levene's modification
of Sarnat & Sarnat score (NNF)

30. As a part of the Collaborative perinatal project of NIH ( CP vs Normal term)

31. Must form a part of routine clinical examination
Of great value in predicting subsequent abnormality
NEUROLOGICAL EXAMINATION

32. Hammersmith neonatal neurological examination (screener) – Term babies
1. Posture and tone
2. Tone patterns
3. Reflexes
4. Movements
5. Abnormal signs or patterns
6. Orientation / behavior
TOOLS

33. Hammersmith neonatal neurological examination (screener)

34. Important complement to clinical assessment
◦ diagnosis for appropriate immediate management
◦ detection of lesions associated with long term neurodevelopmental disability
◦ Limitations –
◦ choice of right technique and timing,
◦ risk of radiation,
◦ need for sophisticated machines and trained manpower
◦ testing outside the NICU may not be possible
NEUROIMAGING – USG/CT/MRI

35. RECOMMENDATIONS
 < 32 weeks and < 1500 g birth weights  Screening neurosonograms at 1-2 weeks
and 36 – 40 weeks corrected age
Ventriculomegaly and cystic PVL have a very high incidence of cerebral palsy
Hemorrhagic encephalopathy – CT scan preferred imaging modality

36.  At discharge, 1 and 3 months to predict CP at 1 year of age
 At 12 months
◦ predict broad range of cognitive and behavioral processes
◦ predict cognitive performance at 36 months
At 24 month - improved prediction to early school performance
At 3-4 year - intelligence can be assessed and later IQ scores
 At 6 years - School achievement can be assessed at
 At 8 years - IQ, neuro-physiological functions, school performance assessed.
FOLLOW UP PROTOCOL - NEUROMOTOR EXAMINATION

37. A. Growth and Nutrition
B. Immunization
MEDICAL FOLLOW UP

38. Preterm VLBW babies grow poorly in postnatal period
factors like sickness and inadequate nutrition
continue to grow poorly throughout childhood
need for early and aggressive nutrition policy
 growth failure is more marked in SGA babies
 standard anthropometric measurements
◦ Weight
◦ Length
◦ Head circumference
GROWTH

39. IU GROWTH CHARTS
◦ Based on reference fetal growth
◦ Postnatal weight loss, sickness and metabolic losses not included
◦ Still the gold standard
Postnatal growth charts
◦ Longitudinal growth of VLBW neonates
◦ Postnatal weight loss included
◦ Intrauterine growth status and multiple gestations not included
WHICH CHART TO FOLLOW?

40. NNF recommends –
Fenton TR. A new growth chart for preterm babies –
◦ from 22 weeks upto 50 weeks
Kelly Wright's chart
◦ involves all 3 parameters (weight, length and HC)
◦ up to 105 postnatal days
◦ only for singleton AGA babies
NICHD growth chart
◦ SGA babies included
◦ well and sick babies included
RECOMMENDATIONS

41. Fenton TR. A new growth chart for preterm babies –
◦ from 22 weeks upto 50 weeks

43. Use standard IU growth chart & plot centiles for weight, length and HC
Follow with an appropriate postnatal growth chart
HC recorded and plotted serially every health visit till two years age and to be assessed
in context of length of the baby
Weight and length must be plotted at every health visit till 6 years of age
RECOMMENDATIONS

44. Post discharge nutrition
◦ Human milk fortifier
◦ Studies reported slower accretion of body bone mass in un-supplemented human milk
◦  continued fortification can cause increase concentration of nutrients at
◦  few studies in premature babies found no differences in growth b/w fortified and un fortified
feeds  (both remaining below 50th centile)
◦  most extensively studied metabolic deficiency is osteopenia of prematurity , Vit D and
fortification can help
NUTRITION

45. hyponatremia
 Preterm are at risk of developing late hyponatremia (Tubular immaturity )
 may need extra Na supplements
Anemia
 Iron supplementation by 4-6 weeks till 1-2 years
 Dose @ 3mg/kg/day)
supplementary feeding
 no standard guidelines
 some prefer to start it by corrected age of 4 months
 too early as it can compromise weight gain

46. Ensure adequate postnatal nutrition.
Ensure adequate vitamin, minerals and Iron supplementation
Start supplementary feeding as per baby’s readiness
RECOMMENDATION

47. “Preterm/VLBW babies should be immunized according to chronological age”
 Hepatitis B - wait till the baby is 2000 g
B. IMMUNIZATION

48. “PRETERM/VLBW BABIES
SHOULD BE IMMUNIZED
ACCORDING TO
CHRONOLOGICAL AGE”
 HEPATITIS B - WAIT TILL THE
BABY IS 2000 G

49. Integral part of follow up care
Transient neuromotor dysfunction
 Mild or moderate abnormalities improving with time
 Due to plasticity of growing brain
Severe dysfunction – worst outcome
NEUROLOGICAL EXAMINATION

50. AMIEL -TISON SCALE

51. Normal development
◦ 28 to 40 wk Caudo-cephalic development of muscle tone and motor function
◦ After 40 weeks till next 12-18 months the process is reversed – cephalo-caudal
Amiel- Tison Scale
 good screening test for Neuromotor assessment
 predictive value at 3 months examination for normal outcome at 12 months is 93%
 mental development not taken into account - Drawback

AMIEL- TISON SCALE

52. 1. Neuro-motor
◦ Tone in upper limb , lower limb and axial
◦ parameters for tone evaluation Spontaneous posture , Passive tone , Active tone
◦ Spontaneous posture  when he or she lies quiet
◦ Passive tone  by measuring angles
◦ Adductor and popliteal angle measured with a goniometer
◦ Active tone response to a given stimulus in infant moving spontaneously  posture recoil
or response to pull to sit or pull to stand
◦ deep tendon reflexes, abnormal persistence of primitive reflexes are also recorded
ASSESSMENT

53. GONIOMETER

54. 2. Neuro-sensory
◦ Hearing and vision
3. Neuro-behavioural
◦ Arousal pattern, quality of cry, suckling , swallowing
4. Head growth
◦ Head circumference and also skull for sutures, size of anterior fontanel

55. Structured, age-appropriate Neuro-motor assessment to be performed by CGA
◦ at least once during the first 6 months
◦ once during the second six months, and once yearly.
• Neurobehavior assessment - great predictive value and guide further imaging,
intervention and planning.
• Neurological Assessment by Amiel –Tison scale, Hammersmith neonatal / infant
neurological examination at discharge and periodically as indicated
• Assessment of severity of disability (function) by GMFCS at 2 years
RECOMMENDATIONS

56. Every baby has different schedule of development
not a predictor of intelligence
Deviations from normal identify an at-risk group
performed in conjunction with medical examination
Factors that may affect development – prematurity
How long to use corrected age (CA)? most researchers correct up to 2-3 years
DEVELOPMENTAL ASSESSMENT

57. 1. Development observation card with CDC grading
2. Trivandrum Developmental Screening Chart (TDSC)
3. Denver Development Screening Test (DDST) / Denver II
4. Development Assessment scale for Indian Infants (DASII)
DEVELOPMENTAL TESTS

58.  DOC is a self-explanatory card
Make sure the baby can see, hear and listen
Four screening milestones
 Social Smile by 2 months
 Head holding by 4 months
 Sit alone by 8 months
 Stand-alone by 12 months
DEVELOPMENT OBSERVATION CARD

59.  17 items taken from Bayley Scale of Infant development
 used for children 0-2 years age
 Place a scale against age line; the child should pass the item on the left of the age
line
 Currently TDSC is being validated for children till 6 years of age
TRIVANDRUM DEVELOPMENT SCREENING CHART (TDSC)

61. Not an IQ test , for children with serious developmental delays.
Consists of 125 tasks, or items.
Includes four areas:
1. Personal –Social: Getting along with people and caring for personal needs
2. Fine Motor-Adaptive: Eye hand coordination, manipulation of small objects, and problem
solving
3. Language: Hearing, understanding, and using language
4. Gross Motor: sitting, walking, jumping, and overall large muscle movement
DENVER DEVELOPMENT SCREENING TEST (DDST /
DENVER II )

63. In babies at moderate – high risk of disability
best formal test for development assessment (below 30 months)
This scale consists
 67 items for assessment of motor development
 163 items for assessment of mental development.
Both mental development index and psychomotor development index can be calculated by
DASII.
This converts the child total scores to his motor age (MoA) and mental age(MeA).
Motor and mental development quotients calculated and compared with his chronological
age
DEVELOPMENT ASSESSMENT SCALE FOR INDIAN
INFANTS (DASII )

64. Squint and refraction assessment
◦ By 9-12 months age, irrespective of ROP.
Language and speech assessment
 Even if passed the newborn hearing test, repeat diagnostic hearing test at 12 months age by
behavioral audiometry
 Comprehensive assessment of speech and language must be done between one and two
years age
 both receptive and expressive language as well as organization and grammars are required
 Language assessment at 9 months and 18 months using Language Evaluation Scale
Trivandrum (0-3)
OTHER FOLLOW UPS

65. Gross motor functioning
◦ can be used from 18 months and up to 12 years
◦ important adjunct to the neurologic assessment
◦ scoring system for gross motor skill levels by direct observation

66. In India there is no standardized guideline for follow up services
Most follow up studies follow the infant for a short term (18-24 months).
Ideally follow up till late adolescence, at least till school to be ensured
In cases of expected drop out, the follow up can be continued up to at least 3 years
when an IQ check and behavioral assessment can be performed
HOW LONG TO FOLLOW UP?

67. Who should be initiated on an early stimulation programme?
◦ Babies at risk of Neurodevelopmental disabilities based on risk factors & Initial assessment
When can early stimulation be started?
◦ As soon as baby is medically stable in the NICU In the NICU
What can be done
◦ Optimize lighting
◦ Reduce noise, gentle music
◦ Club painful procedures, allow suck sucrose / breast milk , hold hand
◦ Tactile stimulation – touch, gentle massage
◦ Kangaroo Mother Care
◦ Non-nutritive sucking
◦ Passive exercises
EARLY INTERVENTION AFTER DISCHARGE FROM NICU

68. • Bold patterns with strong contrasts / parent faces / moving objects
• Talk to the baby / music
• Touch - Rocking, walking and swinging
• Massage
AT HOME

69. • Motor impairment / Hypertonia – medications and physiotherapy
• Physiotherapy and occupational therapy
• Speech therapy
• Seizures
• DDH and other Orthopedic
• Squint correction
• Behavior therapy and pharmacotherapy for behavioral disorders
• Therapy for learning disabilities
SPECIFIC INTERVENTIONS

71. Questions?
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