This presentation is all about how to run a high risk follow up clinic for newborns discharged from a level II/III newborn care unit. It has been prepared mainly based on NNF protocol & AIIMS protocol.

1. Followup of highriskneonates
By
Dr.AbhishekSarkar & DRHASENALIMIA
M.D.PGT 1ST YEAR
Dept.of Paediatricmedicine
NBMC&H.

2. Contents
• Introduction
•Why Follow Up?
• Who needs Follow Up
•Place of Follow Up?
•Pre discharge Preparation & Follow Up Protocol
•Intervention therapy including early stimulation

3. Introduction
• Steady improvement in the quality of perinatal care in
India more VLBW and ELBW babies are surviving.
•Concerns of paediatricians have led to increased survival of
high risk neonates.
•But the incidence of chronic morbidities like cerebral
palsy(incidence 4.5-10%)etc. has increased.
•Timely and appropriate intervention.

4. Need For Follow Up
 Potential disconnect between perinatal outcomes and
longterm outcomes
 To assess efficacy and safety of therapies- Short term
outcomes , not sufficient.
 Understanding of association between risk factors,
therapies and survival.
 No database of outcomes of at risk neonates available
in India.

5. Candidates requiring Follow Up
Mild Risk:
 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

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

7. High Risk:
 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
 8. Seizures

8.  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

9. Place and Personnel for Follow Up
Place of Follow Up should be-
 1.easily accessible
 2.directions should be made known.
LOW RISK BABIES:-
PLACE-at a well baby clinic.
 Follow up with paediatrician/primary care
provider
 OBJECTIVE-to screen for deviation in growth and
development.

10. MODERATE RISK:- PLACE-in or near to a facility
providing level 2 or level 3 NICU care.
 Follow up with neonatologist and developmental
paediatrician.
OBJECTIVE-to screen for developmental delay,
manage intercurrent illnesses.
FOLLOW UP TEAM SHOULD CONSIST OF:-
Developmental paediatrician
Developmental Therapist
Radiologist
Ophthalmologist
Audiologist
Physiotherapist
Social worker & Dietician

11. • HIGH RISK BABIES:- PLACE- same as for Moderate
risk
Follow up with Neonatologist.
OBJECTIVE- to supervise and screen for developmental
delay
FOLLOW UP TEAM SHOULD CONSIST OF:-
Team as for moderate risk PLUS
Paediatric neurologist
Geneticist
Occupational Therapist
Speech therapist
Endocrinologist
Paediatric surgeon
Orthopaedician

12. Predischarge Preparation
 Active surveillance required before discharge plus
in follow up
 To be done/planned before discharge:-
1.Medical examination.
2.Neurobehavioural and Neurological examination
3.Neuroimaging.
4.ROP screening
5.Hearing screening
6.Screening for congenital Hypothyroidism.
7.Screening for metabolic disorders.
8.Assessment of parent coping and developmental
environment

13.  Discharge Summary has to be provided.
It must contain:-
 1. Gestation,
 2. Birth weight,
 3. Discharge weight
 4. Discharge head circumference,
 5. Feeding method and dietary details,
 6. Diagnosis (medical problems list),
 7. Medications
 8. References to other departments

14.  9. Days on oxygen and gestation when baby went
off oxygen,
 10. Findings of last hematological assessment,
 11. Metabolic screen,
 12. ROP screen,
 13. Hearing screen,
 14. Thyroid screen,
 15. Ultrasound cranium,
 16. Immunization status,
 17. Assessment of family

15. Follow up protocol
Following are to be done at follow up:-
1.Medical Examination- Nutrition and growth,
Immunization
2.Neurological examination
3.Development assessment
4.Ophthalmologic assessment- squint and refraction
5.Hearing and Language and speech
6.Gross Motor Function
7.Behavioural,Cognitive and intelligence status.

16. Schedule for Follow Up
 Frequency and type of tests used depends on “intensity or
level of follow up” assigned.
 Initial weekly follow up to ascertain adjustment to home
environment and weight gain.
 Neuromotor exam at discharge and at 1,3 ,6,9 and 12
months of age.
 Squint and Refraction-at 9 months to 1 year of age.
 Other visual problems at 1 year and yearly till school age.

17.  Language and speech assessment – newborn hearing test
repeat hearing test at 1 year.
 Development Assessment –At least once in:-
1. first 6 months, 2.next 6 months, 3.every year till 5 years.
Formal Developmental assessment -within 2 months of
parental concern/abnormal screening test.
AT:-
 2 years -severity of disability by GMFCS
 3-4 years –intelligence and later prediction of IQ scores
 6 years – School achievement
 8 years - IQ, neurophysiological functions and school
performance
 HOW LONG TO FOLLOW UP?-
Till late adolescence, or at least till school.

18. Follow Up Schedule (AIIMS)
Birth wt below 1500g Other
or GA below 32 wk. Conditions
After 3-7 days of discharge 2 weeks after discharge
Every 2 wks until 3 kg 6, 10, 14 wks of postnatal
age
At 3, 6, 9, 12,15 and 18months of corrected age and then
every 6 months until age of 8years

20. Medical Follow Up- Growth & Nutrition
GROWTH-
 Standard anthropometric measurements :- a) Weight,
b)Length, c)Head circumference.
 Growth chart :- Intrauterine OR Postnatal?
 Both have advantages as well as disadvantages.
Recommendations(As per NNF):- 1)standard intrauterine growth
chart to plot centiles for weight , length and HC
Follow up with an appropriate postnatal growth chart
Kelly-Wright chart or Ehrenkranz growth chart
New growth chart Fenton TR- updated version of Bebson
and Brenda’s chart.

21.  After 40 weeks – WHO /CDC growth chart can be
used.
 A new reference to compare growth of VLBW
babies is needed specially in our country.
2)OFC –
 Plotted at every health visit till 2 years in context of
length.
3)Weight and length –
 Plotted at every health visit till 6 years of age.

22. Growth chart for VLBW (Ehrenkranz)

23. A new fetal-infant growth chart for preterm infants -
Fenton TR

24. WHO Growth Charts(For Boys)

25. WHO Growth Charts(For Girls)

26. NUTRITION
Post discharge nutrition
HMF- Fortification remains debatable after discharge.
Enriched formulas - available for formula fed babies, but
no data is available for breast fed babies
Fortification - a difficult proposition for them
 Studies reported slower accretion in radius and whole
body bone mass with unsupplemented human milk vs
formula.
 Risk of continued fortification Excess concentration of
nutrients at corrected age term and beyond.

27.  Close observation is required for at risk babies on full
breast feeds with poor growth or biochemical
abnormalities.
 Adequate postnatal nutrition.
 Adequate vitamin(A,E,D) , minerals and Iron
supplementation - Helps to prevent osteopenia of
prematurity, late hyponatremia(requiring Na
supplementation)
Supplementary feeding of preterm neonates-
 No standard guideline available regarding age of
starting.
 In general decided by readiness of eating semisolids.

29. IMMUNIZATION
 Preterm/VLBW babies are to be immunized
according to their chronological age and as per
guidelines for full term newborns.

30. Medical Examination
 Complete physical examination to be done look for
common anticipated medical problems with impact on
development-e.g hip exam, dysmorphism, neuro-
cutaneous markers etc.
 Unresolved medical problems has to be addressed and
medications has to be reviewed-
1)CLD
2)GERD
3) Reactive airway disease , etc.

31. Neurological assessment
 The neurological examination of infant, toddler and
child is an integral part of follow up care
Amiel Tison Scale
Evaluation of the tone-a fundamental part of this
assessment.
 Pattern of development of tone - gestation dependent
From 28 to 40 weeks- caudo-cephalic direction.
After 40 weeks- cephalo-caudal

32. The assessment is done under the following
headings:
 1. Neuromotor
- Tone in upper limb , lower limb and axial
 2. Neurosensory
- Hearing and vision
 3. Neurobehavioural
- Arousal pattern, quality of cry, sucking ,swallowing
 4. Head growth
- HC and also skull for sutures, size of AF

33. Tone may be assessed in the form of -
 1. Spontaneous posture
 2. Active tone
 3. Passive tone
Spontaneous posture - evaluated by inspecting the child
while he or she lies quiet
Active tone- assessed with the infant moving spontaneously
in response to a given stimulus
Passive tone - evaluated by measuring the angles at
extremities. The resistance of the extremity to these
maneuvers is measured as angle as given below

34. Amiel-Tison method

36.  Abnormal neurological examination should be defined
as definite abnormalities in the form of:
a) Hypertonia or
b) Hypotonia or
c) Definitely and consistently elicited
asymmetrical signs or
d) Persistent abnormal posturing or abnormal
movements
The tone abnormalities should be taken care by
regular physiotherapy

37. Developmental assessment
 Various development scales which are used
commonly are-
 1. Devpt Observation Card (DOC) with CDC grading
 2.Trivandrum Developmental Screening Chart (TDSC)
 3. Denver Development ScreeningTest (DDST) / Denver II
 4. Development Assessment scale for Indian Infants (DASII)
 In Indian context, DASII is the best formal test for
development assessment (below 30 months).

38.  1.Devpt Observation Card (DOC) with CDC grading:
 DOC is a self-explanatory card that can be used by
parents.
Four screening milestones
 Social Smile by 2 months
 Head holding by 4 months
 Sit alone by 8 months
 Stand alone by 12 months
Make sure the baby can see and listen

39.  2. Trivandrum development screening chart
(TDSC) :
 TDSC is a simple screening test.
 There are 17 items taken from Bayley Scale of Infant development.
 The test can be used for children 0-2 years age.
 No kit is required.
 Anybody, including an Anganwadi worker can administer the test.
 Place a scale against age line; the child should pass the item on the
left of the age- line

40. 2. Trivandrum development screening chart
(TDSC) :

41. 3. Denver development screening test (DDST)
• Compares the index child against child of similar age.
• Four sectors- Gross motor, Fine motor, Language & social
• The test items are represented on the form by a bar that spans the
age at which 25%, 50%, 75%, and 90% of the standardization
sample passed that item.
• The child’s age is drawn as a vertical line on the chart and the
examiner administers the items bisected by the line.
• The child’s performance is rated “Pass”, “Caution”, or “Delay”
depending on where the age line is drawn across the bar.
• The number of delays or cautions determine the rating of “normal”
or “suspect”.

43. 4. Development Assessment scale for Indian
Infants (DASII)
 67 items for assessment of motor development, and
 163 items for assessment of mental development.
 Motor age  Motor devpt quotient
 Mental age  Mental devpt quotient

44. Squint and refraction assessment
By 9-12 months age, irrespective of ROP status.
Language and speech assessment
 Babies with risk factors for hearing loss- repeat diagnostic
hearing test at 12 months age- retesting of hearing by
behavioral audiometry at 1 year.
 Comprehensive assessment of speech and language must be
done between 1-2 years age using Language Evaluation Scale
Trivandrum (0-3).

45. Gross Motor Functioning
 An important adjunct to the neurologic assessment.
 A gross motor functional classification scale (GMFCS) is
used in many western centres
 Used between 18 months to 12 years
 Contains a scoring system for gross motor skill levels by
direct observation.
 5 levels from normal category to severe disability
Learning Problems
 All VLBW and ELBW babies should be followed up till
adolescence for school difficulties and development of
intervention strategies to improve the outcome

46. Behavioural,Cognitive and
Intelligence status
 Many cognitive,learning and behavioral problems that
are commoner in at-risk neonates are apparent only on
longer follow up.
 Behavioral assessment can be done after 1 yr of age
 Formal cognitive development, IQ is tested by 3 years

47. Intervention including Early stimulation
therapy
• Interventions aiming at enhancing parent – infant relationship
focuses on sensitizing the parents to infant cues and teach
appropriate and timely response to the infant’s needs
• A recent Meta analysis showed that early intervention improved
cognitive outcome at infant age (0-2 years)
• It is recommended to start early intervention while the baby
is still in NICU/SNCU

48.  Early intervention after discharge from NICU/SNCU
 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 and continued till at least 1 year age
In the NICU/SNCU-
 Optimize lighting
 Reduce noise
 Club painful procedures, allow sucking sucrose / breast milk ,
hold hand
 Tactile stimulation – touch, gentle massage
 Kangaroo Mother Care
 Non-nutritive sucking
 Passive exercises

49. What is done in early stimulation?
 Assess parenting –skills and educate
 Stimulate the child in all sectors of development – motor,
cognitive, Neuro-sensory, language
 Stimulate to achieve the next mile-stone(developmentally
appropriate rather than age-based)
 Physical stimulation – passive exercises to prevent
development of hypertonia
 Caution – Avoid over-stimulation (negative effects on
development when many inputs of different nature started
simultaneously)

50.  At Home-
 Birth to 2 months- Place your baby's head and neck on the
crook of your elbow and forearm while lifting or carrying her
 2 to 4 months-
• Help your baby to roll by placing her on either side
• Calling her name or making a sound with the rattle from behind
encouraging her to turn
 4 to 6 months –
• Play different types of music for her to listen
• Make her sit in front of the mirror and imitate the sounds that
she makes
• Roll a medium size ball gently in front of her for her to follow
• Give her small light rattles to hold in each hand
• Encourage her sit by herself leaning on her arms and taking their
support
• Start an activity that she enjoys and then stop see if she moves her
body in the same manner to indicate her desire to continue the
play

51.  6 to 8 months-
• Call the child by one name only and encourage her to respond by
smiling at her.
• Make her sit independently for 5 to 10 mins by putting her brightly
colored and musical toys in front of her. If she loses balance, after
some time help her to sit again by holding her from the hips lightly.
• Give her a spoon to bang on a steel plate, small drum to bang her hand
on, rattle to shake,paper to crumble and tear (please be there when she
is playing with paper).
• Encourage crawling when she is on her tummy by placing her favorite
toy in front of her just a little out of her reach.
• Repeat the sounds of “da da, ma ma, ga ga, ba ba” that she makes.
Pretend you understand them and answer back in your mother tongue
with different intonations.
• Keep talking to her and naming all the family members as come to her,
hold or play with her.

52.  8 to 10 months-
• Put two blocks in each hand and encourage her to bang them
together while looking at them. Encourage her to clap her
hands.
• Hold her hand and help her to take out toys one by one from a
tub filled with toys. Once she has learnt to take out the toys,
hold her hand and encourage her to drop the toys back into the
tub one by one.
• When a family member leaves, ask her to wave bye bye.
• Take her in your lap and show her picture books with single,
large, colorful pictures of everyday objects and animals. You
name and point at the pictures.

53.  10 to 12 months-
 Show her the functions of objects used in daily life, like glass for
drinking mobile for talking, comb for the hair.
 Encourage her to hold furniture and take some step around it.
 12 to 15 months-
 Take her hand and help her to point to a toy or any food item she
wants. You say the name of the toy and encourage her to take out a
sound resembling the name.
 Hold her lightly from the back and give her the confidence to take few
steps on her own.

54. Specific interventions
 Motor impairment / Hypertonia – medications and
physiotherapy and occupational therapy
 Speech therapy
 Squint correction
 Behavior therapy and pharmacotherapy for behavioral
disorders
 Therapy for learning disabilities

55. Summary
 • All health facilities caring for sick neonates must have a
follow up program with establishment of a
multidisciplinary team.
 • The level of follow up can be based on anticipated severity
of risk to neurodevelopment. The frequency of follow up and
the type of tests depend on “intensity or level of follow up”
assigned. The schedule for follow up must be planned
before discharge from birth admission.
 • Prior to discharge, a detailed medical and neurological
assessment, neurosonogram, ROP screen and hearing screen
should be initiated. A psychosocial assessment of the family
should also be done.
 • The follow up protocol should include assessment of
growth, nutrition, development, vision, hearing and
neurological status.

56. Summary(contd…)
 • Formal developmental assessment must be performed at
least once in the first year and repeated yearly thereafter till
six years of life. In Indian context, DASII is the best formal
test for developmental assessment (till 2 year 6 months).
 • Ideally, the follow up should continue till late adolescence,
at least till school as many cognitive problems, learning
problems and behavioral problems that are more common
in at-risk neonates are apparent only on longer follow up.
 • Early intervention programme (early stimulation) must be
started in the NICU/SNCU once the neonate is medically
stable.
 • Timely specific intervention must be ensured after
detection of deviation of neurodevelopment from normal.

57. S
U
M
M
A
R
Y