Follow up of high-risk newborn-1

Follow up of High risk Newborn

1. Follow-up of High-risk newborn Dr Ankur Priyadarshi Asistant Professor Dept. of Paediatrics, JLNMCH, Bhagalpur

2. Which baby needs follow-up (identify at risk newborn)? Where should SNCU/NICU graduate be followed up ? Who should do the Follow-up ? How to use ‘follow-up protocol’ ?

3. INTRODUCTION Improving perinatal and neonatal care has led to increased survival of infants who are at-risk for post discharge long-term morbidities such as G rowth failure Neurosensory sensory impairment , V isual/hearing problems. D evelopmental deficits

4. What is the evidence ? A recent systemic review in Lancet has reported a high prevalence of long term neurodevelopmental sequelae after different intrauterine and neonatal insults. Sepsis (40%) Meningitis (42%) HIE (37%) Preterm birth (31%) Jaundice (18%) Tetanus (26%) CMV Infection (41%) Most common sequelae include Learning difficulties Cognition and developmental delay Cerebral palsy Hearing impairment Visual impairment

5. An appropriate and comprehensive follow-up program is essential for high risk infants. This will help in early detection and early intervention or management of any morbidity associated with perinatal events. Follow-up shall ensure not only intact survival and optimal growth but also an optimal quality of life for these infants .

6. Which baby needs follow-up ?

7. Who needs follow-up care? A rigorous follow-up of all the neonates discharged from a particular health facility would neither be practical nor feasible. Therefore it is important to select a cohort of neonates who are at higher risk of developing adverse outcomes. “ High risk ” infants

8. Who needs follow-up care? It is very important to identify all at risk babies. The identification should be done at the time of discharge These babies are at risk of Neurodevelopmental , Growth , Nutrition, Visual and Hearing impairment

9. Risk factors Biological risk factors Prematurity <34 weeks Low birth weight <1800 Severe IUGR(< 3rd percentile ) Malformations (major) Intervention Inotrope use Mutiple anti convulsants Prolonged antibiotic course Need for resustication in postnatal period Morbidity related Asphyxia Shock Resp distress requiring support Sepsis (culture proven or meningitis) Jaundice (near exchange level) Significant PDA NEC Hypoglycemia Socioeconomic Poor family support, Multiple births, Low maternal confidence

10. There are no standardized criteria for defining high risk infants. It can further be modified for each unit based on their admission and outcome profiles.

11. High Risk Identification Check List (this is a sample /each unit may customize) Babies birth weight <1800 gm and or gestation <34 weeks. Perinatal asphyxia – APGAR score 3 or less at 5 minutes and /or HIE stage II & above Small for date (<3 rd centile ) and large for date (97 th centile) Hypoglycemia Neonatal seizures Sepsis with meningitis or culture positive sepsis Shock requiring inotropic / vasopressor support Total serum bilirubin in the exchange range Suboptimal home environment

12. The developing brain of premature babies is extremely vulnerable to injury. The risk for neurodevelopmental deficit increases with decreasing gestational age and birth weight resulting in relatively high risk of Cerebral palsy, Developmental delay, Hearing and vision Impairment and Subnormal academic achievement Severe IUGR (birth weight < 3rd centile) are also at significant risk of poor long term outcomes.

13. Where should the baby be followed up and Who should do the follow-up ?

14. All the baby discharged from SNCU should be followed up in SNCU on a fixed day and time. Routine examinations including anthropometry, growth, breastfeeding issues, immunization and developmental screening should be done by SNCU doctor.

15. Any abnormality detected needing specialized evaluation should be referred to higher center equipped with developmental/interventional facilities. Such a center should preferably be the nearby medical college or any other tertiary care facility. SNCU staff should provide support to the family during referral to such a centre.

16. Who should do the Follow-up ?

17. Team required On day to day basis (Primary team at SNCU) Paediatrician/ Medical officer at SNCU Nursing staff (for coordinating and assisting in the clinic ) Administrative staff to send reminders and ensure follow-up visits.

18. Referral Base Developmental paediatrician (with skills for detailed developmental evaluations. Developmental therapist (with experience in neuromotor and stimulations therapy) Radiologist (with skills to perform cranial sonography of the preterm) Ophthalmologist (with skills to perform ROP screen) Orthopedician . Audiologist ( for OAE/BERA) Physiotherapist , Occupational therapist and Speech therapist Social worker (to organize and assist the attenders to accomplish this multidisciplinary management). Dietician

19. Pre-requisites for follow-up Discharge planning To ensure proper follow-up of the high risk infants, parents (especially mother) and other family members should be counseled even before discharge from the hospital. Discharge should be planned well in advance so that the mother can be counseled adequately. This gives adequate time for the caretakers to ask questions and practice skills.

20. Discharge Criteria Criteria should be fulfilled before discharging a high risk infant: Hemodynamically stable; able to maintain body temperature in open crib On full enteral feeds (either breast feeding or by paladai /spoon) Parents confident enough to take care of the baby at home Has crossed birth weight and showing a stable weight gain for at least three consecutive days; I n case of very low birth weight infants, weight should be at least 1600 grams before considering for discharge. Not on any medications (except for vitamins and iron supplementation). Ideally preterm babies on theophylline therapy for apnea of prematurity should be off therapy for at least five days to make sure that there is no recurrence. Received vaccination as per schedule (based on postnatal age).

21. Counselling prior to discharge R egular counseling sessions should be done before discharge . Parents should be given 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 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.

22. Procedure for follow-up Venue: A specified site should be earmarked for follow up services. The parents should be properly communicated about the venue and it should also be mentioned in the discharge summary. Registration procedure at the follow-up clinic should be simplified to avoid any undue delay. Ongoing illness is common problem among these infants. If the infant develops any illness requiring admission, priority should be given for the same.

23. Procedure for follow-up Record maintenance : There should be a separate but uniform file for each high risk infant . Addresses and telephone numbers should be entered clearly in the file. If possible, an alternate address and telephone number should also be recorded. It may be good idea to enquire an important landmark for locating the house in case one needs to make a home visit. The family should also be given a booklet containing follow-up information.

24. If possible the family should be provided with the telephone number of the healthcare provider e.g. on-duty doctor in case the family needs to consult for infant’s illness.

25. When to follow up ?

26. Follow-up schedule of at-risk infants Cohort Schedule for follow-up Infants with <1800g birth weight and/or gestation <35 weeks All other conditions After 3-7 days of discharge to check if the baby has been adjusted well in the home environment. Every 2 weeks until a weight of 3 kg (immunization schedule until 10-14 weeks to be covered in these visits) At 3, 6, 9, 12 and 18 months of corrected age and then every 6 months until age of 8years 2 weeks after discharge At 6, 10, 14 weeks of postnatal age At 3, 6, 9, 12 and 18 months of corrected age and then every 6 months until age of 8years

27. Schedule of follow up The schedule of follow up represents minimum number of visits of high risk neonates. If the baby has ongoing issues or illness, more frequent visits are recommended. Please note that first contact of the infant with the health providers after discharge is important and helps in identification of adjustment problems at home.

28. Very low birth weight babies or those born at less than 33 weeks gestation should be followed up for eye check up for retinopathy of prematurity till the postnatal age of 44 weeks.

29. By 12 months corrected age the cognitive and language assessment can be done. By 18-24 months corrected age there is improved prediction to early school age performance. The importance of long term follow up lies in the fact that minor neurological disabilities may not be detected early and become apparent only with increasing age.

30. What should be done at follow up?

31. Corrected age : Age of the child since the expected date of delivery. The correction for gestational immaturity at birth should be done till 24 months age. All developmental milestones are assessed according to corrected age to compensate for the prematurity. The addition of complementary feeds is also according to corrected age. Postnatal age : Age of the child since birth. Immunization is done according to postnatal age.

32. What should be done at follow up? Assessment of feeding and dietary counseling Growth monitoring: Immunization Ongoing morbidities Neurological assessment Developmental Screening Formal developmental assessment Hearing evaluation Ophthalmic evaluation & ROP screening Neuro imaging USG/MRI

33. Follow up plan for high risk infants Assessment Age in months Assessment of feeding and dietary counseling Growth monitoring Immunization Ongoing morbidities Neurological assessment Developmental Screening Formal developmental assessment Hearing evaluation Ophthalmic evaluation & ROP screening Neuro imaging (USG/MRI) √ √ √ √ - √ √ √ ¶ ¶ ¶ - ¶ ¶ √ ¶ - ¶ ¶ 1 2 3 6 9 12 15 18 24…. ..8yrs √ ¶ ¶ √ - √ √ All visits All visits As per schedule ( based on post natal age ) All visits as and when required All visits As indicated

34. 1. Assessment of feeding and dietary counseling Parents should be asked about the infants’ diet and offered dietary counseling at each visit. Breast feeding frequency and adequacy should be assessed. The amount, dilution and mode of feeding should be noted if supplemental feeding is given Complementary feeding should be started at 6 months corrected age . The recommended meal frequencies 2−3 meals per day for infants aged 6−8 months; 3−4 meals per day for infants aged 9−11 months and children 12−24 months;

35. 2. Growth monitoring: Growth ( weight, head circumference, MAC and length) Weight should be taken on an electronic weighing scale. Length should be measured with an infantometer . The infant should be held supine and legs fully extended. The feet should be pressed against the movable foot piece with the ankles fixed to 90˚. Head circumference should be measured with nonstretchable fiberglass tape

36. Plotted on an appropriate growth chart at each visit. Use of Fentons chart if the the baby is preterm till 40 weeks PMA and WHO growth charts (for preterm infants after 40 weeks PMA and for term infants) . The infant’s growth pattern (slope of the curve) is compared with the standard curve; any deviation should be noted and appropriate remedial action taken

37. 3. Immunization: Immunization should be ensured according to chronological age

38. 4. Developmental assessment Assessment of developmental milestones should be done according to the corrected age . The milestones should be assessed in four domains- gross motor, fine motor, language, and personal-social Based on the date of achievement of milestones in a particular domain and the expected age of achieving them, the developmental age can be calculated. Early identification of developmental problem should lead to further developmental and medical evaluation, diagnosis and treatment including early developmental intervention

39. It is important that a pediatrician /neonatologist be well versed with the normal developmental milestone. Should be able to use available screening tools effectively So that a formal developmental evaluation be required only for the most deserving cases.

40. Commonly available and used screening test in India 1. Trivendrum Development screening Test( TDSC) 2. Denver Developmental Screening Test II (DDST II or /Denver –II) 3. Baroda Development Screening test (BDST)

41. 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

42. Trivendrum developmental screening chart (TDSC) is commonly used is most of the places. DDST II is also used in some places though it requires some training before it may be used

43. Importance of the Developmental screening test The test compares the index child against children of similar age. The test is not designed to derive a developmental or mental age, nor a development or intelligence quotient; It is to be used only to alert the professional to the possibility of developmental delays so that appropriate diagnostic studies may be pursued.

44. Developmental assessment In Indian context, Development Assessment scale for Indian Infants ( DASII ) is the best formal test for development assessment (below 30 months). Gives developmental age of a child expressed as percentile of normal Provides developmental quotients comparing developmental and corrected age of the child

45. Other tools for developmental evaluation Modified Checklist of autism for toddlers (MCHAT) Vineland social maturity scale(VSMS) Vineland Adaptive behaviour scale-II Child Behaviour Checklist -language development survey (CBCL-LDS) Recent concern has arisen that rates of Autism Spectrum Disorder (ASD) may be higher in ELBW infants than previously thought. Whereas low birth weight (<2500 g) may result in a two- to threefold increase in the risk of ASD

46. www.mchatscreen.com

47. LOW-RISK: Total Score is 0-2; if child is younger than 24 months, screen again after second birthday. No further action required unless surveillance indicates risk for ASD. MEDIUM-RISK: Total Score is 3-7; Administer the Follow-Up (second stage of M-CHAT-R/F) to get additional information about at-risk responses. If M-CHAT-R/F score remains at 2 or higher, the child has screened positive. Action required: refer child for diagnostic evaluation and eligibility evaluation for early intervention. If score on Follow-Up is 0-1, child has screened negative. No further action required unless surveillance indicates risk for ASD. Child should be rescreened at future well-child visits. HIGH-RISK: Total Score is 8-20; It is acceptable to bypass the Follow-Up and refer immediately for diagnostic evaluation and eligibility evaluation for early intervention.

48. 5. Neurological assessment Amiel Tison is currently the most widely use neurological examination tool during early follow up of infants. The main focus of neurological examination during the high risk follow-up is evaluation of muscle tone besides vision and hearing. Evaluation of muscle tone is an integral part of the neurological examination

49. Principles of development of Muscle Tone From 28 to 40 weeks gestation , the acquisition of muscle tone and motor function spreads from lower extremities towards the head . ( Caudocephalic progression ). After full term the process is reversed so that relaxation and the motor control proceed downwards for the next 12 to 18 months (cephalo-caudal) So the upper limbs begin to relax and acquire skills before the lower limbs.

50. The axial tone follows a similar pattern. Head control appears first followed by the ability to sit, stand and walk.

51. Assessment of tone Hypertonia or hypotonia should be looked for by measuring the following angles: Adductor angle Popliteal angle Ankle dorsiflexion Scarf sign

52. Assessment of tone

53. Assessment of tone

54. Assessment of tone Hypertonia in lower limbs is defined as when either Adductor angle is restricted to less than the age specific norms as per Amiel-Tison or if there is scissoring or tight tendo-achilles or restriction of ankle dorsiflexion on extension of knee.

55. Assessment of tone Hypertonia in upper limbs is defined as when scarf sign does not cross midline at one year corrected age. Hypertonia of the neck extensors increased gap between the nape of the neck and examination table with the infant lying in supine position.

56. Any asymmetry between the extremities should also be recorded. Any history of seizures or involuntary movements should also be recorded. Some neurological abnormalities that are identified in the first year of life are transient or improve whereas findings in other children may worsen over time.

57. 6. Hearing evaluation: High risk infants have higher incidence of moderate to profound hearing loss (2.5-5% vs. 1%). Since clinical screening is often unreliable, brainstem auditory evoked responses (BAER/BERA) should be performed between 40 weeks PMA and 3 months postnatal age.

58. A screening BERA is usually done initially in all cases prior to discharge. Those who fail on first screen are rescreened prior to discharge to minimize the false positivity rates. Those failing on second screen are referred for the diagnostic BERA in the department of ENT.

59. In the infants without risk factors OAE may be used at both steps , but for infants with risk factors , it is imperative to use AABR for the initial screen so that neural hearing loss will not be missed.

60. For premature infants (born at <34 weeks of gestation ), hearing screening should ideally be done after they reach 34 weeks postmenstrual age as it has been shown to decrease false positive results. For readmission in the first month of life for all infants who are at high risk ( e.g. hyperbilirubinemia requiring exchange transfusion or meningitis ) a repeat hearing screening is recommended before discharge.

61. Any baby missing initial screen should be instructed to return for screen after 6 weeks , which may coincide with the immunization visit (to minimize fall-outs)

62. Oto-acoustic emission (OAE) OAE records acoustic feedback from the cochlea through the ossicles to the tympanic membrane and ear canal following a click stimulus. It is quicker to perform than BERA but is more likely to be affected by debris or fluid in the external and middle ear. It is unable to detect some form of sensorineural hearing loss including auditory dysynchrony .

63. The severity of hearing loss is Profound (70 dB or more of hearing loss), Severe (50 dB - 70 dB), Moderate (30 dB - 50 dB) and Mild (15 dB - 30 dB).

64. The audiological testing should be done at 3 months of age Infants with true hearing loss should be referred for early intervention to enhance the child’s acquisition of developmentally appropriate language skills.

65. Fitting of hearing aids by the age of 6 months has been associated with improved speech outcome. Initiation of early intervention services before three months age has been associated with improved cognitive development at 3years age15

66. 7. Vision assessment Besides the check up for retinopathy , which should start in NICU and continue till 40-44 weeks post conceptional age or till the retinal vessels have matured, the children should have an assessment for eye problem in the newborn period and then at all subsequent routine health supervision visits

67. Ocular History Ask the questions such as; If the child is able to see well If the child hold objects close to her eyes while focusing Do they find child’s eyes straight. Do the eyes seem to cross or seem hazy. Do eyes appear unusual

68. 8. Role of neuroimaging For very preterm neonates Routine screening cranial ultrasound is recommended in preterm neonates below 32 weeks gestation at postnatal age of 7-14 days and between 36 and 40 weeks PMA. MRI Brain detects more abnormalities than CUS , however current evidence doesnot support its routine use

69. Screening CUSG (timing) The following are the broad guidelines for timing of CUS screening in NICU. 1. Routine screening of well preterm babies First scan- 48 to 72 hours (detects most IVH ) Second scan - 1 to 2 week (detects early PVL ) Third scan - at 3-4 weeks (detects cystic PVL ) Fourth scan at term equivalent age detects sequalae such as Ventriculomegaly, Hydrocephalus As and when required depending upon clinical indication

70. Role of neuroimaging 2.Sick symptomatic term/ preterm infants Immediately after birth or when decided clinically 3. Follow up scans in infants if abnormalities are detected on above-mentioned scans At 1-2 weeks interval as per clinical decision

71. Role of neuroimaging Term infants with asphyxia The conventional (T1 , T2) and diffusion weighted (DW) MRI scan can help in Diagnosis (global hypoxia ischemia, focal infarction ) , Time of insult and Outcome

72. Role of neuroimaging Timing of scan The prognostic utility of MRI has been shown from day 3-14 . Late MRI (day 8 -30) has higher sensitivity than early MRI (day 1and 7) for prediction of outcome at age one year

73. Role of neuroimaging Term neonate with bilirubin encephalopathy An MRI should be considered for infants with bilirubin encephalopathy. It should be done in newborn period once the infant is clinically stable.

74. Early intervention

75. Early intervention The problems associated with high risk infants are often identified very late when little can be done. No Drug has been conclusively proven to be effective in improving outcome in post- asphyxial encephalopathy intraventricular hemorrhage and periventricular leukomalacia. Hence, developmental follow up and early intervention is the answer to this problem

76. Early intervention programme (Early stimulation) must be started in SNCU/NICU itself once neonate is medically stable

77. In the SNCU/ NICU 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

78. Motivate the parent to stimulate the baby with appropriate stimuli; the parents of an at-risk baby are likely to be demoralized & at-risk of not being involved in stimulation of the child.

79. Specific interventions 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

80. All health facilities caring for sick neonates must have a follow up program. Prior to discharge, a detailed medical and neurological assessment, neurosonogram , ROP screen and hearing screen should be initiated. The follow up protocol should include assessment of growth, nutrition, development, vision, hearing and neurological status. Formal developmental assessment must be performed at least once in the first year and repeated yearly thereafter till six years of life. 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 once the neonate is medically stable. Timely specific intervention must be ensured after detection of deviation of neurodevelopment from normal.