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Science at the heart of medicine
Follow-up Care of the High Risk Newborn
6th
Neonatal Conference
Hot Topics in Neonatal Medicine
February 21, 2011
Deborah Campbell, MD, FAAP
Faculty Disclosure
In the past 12 months, we have not had any significant
financial interest or relationship with the manufacturers of
the products or providers of the services that will be
discussed in my presentation.
This presentation will not include discussion of
pharmaceuticals or devices that have not been approved by
the FDA.
Objectives
1. Review management approaches to airway and respiratory
problems
2. Discuss the post-discharge nutritional needs for the VLBW or
medically complex infant and strategies to promote growth and
feeding problems
3. Identify normal and abnormal patterns of growth and
development
4. Describe necessary health maintenance strategies for the high
risk newborn– immunizations, vision and hearing screening
5. Describe the later childhood, adolescent and adult health and
functional outcomes for selected groups of high risk NICU
graduates
Medical Home Framework
 Care that is:
 Accessible
 Family-centered
 Comprehensive
 Continuous
 Coordinated
 Compassionate
 Culturally-sensitive
 PCP shares
responsibility
 Benefits
 Efficiency
Care coordination
Limited resources, cost
 Timeliness
 Effectiveness
Problem-solving
 Satisfaction
Family & health professional
 Improved health/functional
status
Infants who require a medical home
 AAP Policy statement:
Hospital Discharge of the
High Risk Infant (Pediatrics
2008; 122(5):1119)
 Preterm infant
 Infant with SHCN or
dependence on technology
 Infant at risk because of
family issues
 Infant with early anticipated
death
 Ontario neighborhood
study (Wang et al. Arch Pediatr
Adolesc Med. 2009;163(7):608-615)
 2.3% newborn had > 1
chronic care condition
at nursery discharge
CV
Respiratory
Congenital/genetic
Renal
Neuromuscular
GI
What are the important timeframes of
continuing care for the preterm, LBW child?
 NICU discharge criteria
 Transition to home and community
 Infancy
 Early childhood
 Late childhood
 Adolescence and transition to adulthood
 Parent and family support along the continuum of care
NICU Discharge Criteria
 Able to maintain body temp in
open crib
 Nippling all feeds well by
breast or bottle
 Gaining adequate weight
 34 weeks’ gestation, ~ 1800
grams
 Average PT meets these criteria
between 34-38 weeks PMA
 PT infants who remain beyond
this time may have
 More significant CLD
 Apnea
 Feeding difficulties
 Malformations
 Other complications of
prematurity – surgery
 Stable cardiorespiratory status
 No apneas or bradycardias for
4-8 days PTD
 Home monitoring
 Caffeine
 Home O2 for infants with
 CLD
 Severe GERD
 Apneas + bradycardias
 Car seat safety
 ~20% will have desaturations
in car seat
 Parent rooming-in pre-
discharge
Health Care for the Preterm Infant
 Primary care visits
 Within 1 week after
discharge
 Schedule of visits
depends on health
issues and parent
concerns
 Periodic
developmental
surveillance
 Specialty follow up
 Cranial sonography at 40 w
PMA – PVL (if MRI not done
or residual IVH)
 Ophthalmology
 ROP checks until vasc
mature, ROP resolved
 Q 6-12 mos. assess visual
function/acuity
 Hearing
 Behavioral audiometry at 8-
10 mos. CA
 Periodic developmental
screening → Early
Intervention Program
Transition Points
 Informational, support and resource needs change
along the health and developmental trajectory
 Importance of eliciting from parents/families what they
perceive/assess their needs to be for information and
support
 Parents may be at a different transition point than the
professionals
May have needs different than what professional perceives as
necessary or important
Transition Points for Parents:
Post-discharge concerns in the first 3 months
 Feeding, weight gain, general health/illness and infections
 Infant with more significant/complex health conditions
 Home oxygen, cardiorespiratory monitoring
 Repeated hospitalizations
 Negotiating complex health care system
 Multiple appointments w/ multiple specialists
 At-risk (child find) registry-Early intervention
 Communication (partnership building) w/ PCP, specialists,
between specialists and PCP, w/ family, friends, others
 Parents feeling “abandoned” by NICU staff: child can’t be
readmitted; loss NICU support system
Slide series courtesy of D. Campbell
Transition Points: 3 months to 1 year
 Continued concerns about feeding, weight gain and general
health
 Social interaction and emerging milestones
 For a subset of families
 Concern about neurological problems: risk of CP
 Loss of informal support network
 Insecurity regarding what is “normal” for their infant
Transition Points: 1-3 years
 Motor milestones are progressing
 Even among infants with impairments
 Generally, infants w/ motor problems continue to improve and
make steady progress
 Language acquisition a concern for many families w/
preemies
 May need EI referral for speech-language/communication
problems
Transition Points: Preschoolers
 Some children socially immature for their age
 Attentional problems and hyperactivity may be a problem
for 10-20%
 Parents should be advised to watch for learning difficulties
and seek early remedial assistance
 Preschool, nursery or specialized day care programs
Transition Points: Middle and Late Childhood
 Formal psychometric testing, as a group:
 Preterm children perform less well in terms of IQ, reading,
spelling, and math
 50% perform in normal range
 20-30% may present w/ LD
 < 26 weeks’ gestation
 > 30 weeks’ gestation- fewer problems
 Remedial educational assistance required by 30-40%
 Behavioral difficulties
 Hyperactivity and attentional problems may persist and
interfere w/ learning process (parent and teacher reports)
Adolescence-Adulthood
 Most motor difficulties, if present, less problematic
 Learning problems persist in 30-40%
 Math most challenging
 Nearly 50% ELBW teens require PT/FT special educational
assistance
 Grade repetition – 20-30%
 Attention problems less taxing as grow older
 Delinquency and risk-seeking behaviors less common than among
NBW FT counterparts
 Less drug and alcohol use*
 Less satisfied with appearance*
 More regular use prescription medication*
* Cooke, Arch Dis Child 2004; 89: 210-206Hack et al., NEJM 2002; 346:149-57
Components of Follow-up Care
 Primary care health
 Medical home
 Subspecialty care
 Ophthalmology
 Pulmonary
 GI and nutrition
 Endocrinology
 Nephrology
 Audiology
 Speech-feeding
 Pediatric surgery
 ENT
 Dental
 Physiatry – orthopedics
 Neurology – neurosurgery
 High risk follow up
program
 Monitor development of
children at risk for emerging
delays
 Focus on identifying
problems as they emerge
 Routine screening tests may
not identify DD in these
children
 Periodic screening for
sensory, impairment, DD
 Evaluation medical,
psychological, social factors
Components of Health and Developmental Follow
up for the Preterm and High Risk Infant
Science at the heart of medicine
Components of Health and Developmental Follow
up for the Preterm and High Risk Infant
Science at the heart of medicine
Timeline of Neurodevelopmental Child
Outcomes
1-3 yrs 4-7 yrs 8+ yrs
Cognitive
Executive function
Motor function
Temperament, self-regulation
Relationship to parent
Behavioral problems
Relationship to peers
Psychopathology
Antisocial behavior
School failure
NICHD Workshop. Pediatrics 2004; 114(5):1377-1397
Role of the pediatrician caring for a
preterm or other high risk infant
 Managing /coordinating care for discharge diagnoses
 Meet families prior to discharge from NICU
 Attend discharge planning meeting
 Obtain and review discharge summaries prior to 1st
office
visit
 Anticipating new medical problems
 Regular primary care issues
 Addressing Family Concerns
Great Expectations
What’s expected of parents
 Administration multiple
medications
 Maintaining difficult feeding
strategies and schedules
 Appropriate response to an
infant w/ poor state regulation
 Irritable
 Day/night confusion
 Sensitive to sensory
stimulation
 Manage multiple
appointments
 Manage equipment and other
needs
 Conduct the rest of their life
What’s expected of the PCP
 Up to date on current
treatments and
technology
 Know all drug doses and
indications for special
formulas
 Comfortable w/
equipment
 Coordinate the
“medical” home and
early intervention needs
Barriers Facing the PCP Providing
Primary Care for the HR Infant
 Difficult for PCPs alone to provide medical homes for medically
complex, fragile infants
 Limited familiarity with unusual disorders and
their therapies
 Incomplete knowledge of available community
resources
 Distance from tertiary care centers
 Poor reimbursement for care coordination
 Insufficient time
Arch Pediatr Adolesc Med. 2007;161(10):937-944
HRI/Preterm Follow-up Clinic
 Tertiary center-based
or community-based
 Comprehensive care v.
neurodevelopmental
surveillance only
 Fragmentation in care
 Not a true medical home
 Time-limited (24-36
months corrected age)
 Developmental
surveillance
 Is not paid for by most
insurances
 Covered under EPSDT
requirements for Medicaid
recipients
 Many states do not include
these infants under
automatic eligibility for
early intervention
 Screening and surveillance
by the PCP required, but
not paid for
Barriers Noted by Neonatal Programs that Limit
Offering Structured HRI Follow up Care
 Funding
 Cost and insufficient
reimbursement
 Hospital/department/
division support
sustains many programs
(Kuppala, et al. personal communication;
C. Harrison, VA Neonatal Work Group,
2006)
 Qualified personnel
 Family compliance
with recommended
care
 Lack of understanding
of the need for follow
up services
 Multiple (competing)
health care needs
 RN-specialist maintained contact w/ family/care givers and
community-based HCPs
 Comparable health (growth, hospitalizations) and
developmental outcomes (median MDI, PDI)
Pediatrics 2007; 119:e947-e957
Tertiary Care-Primary Care Partnership Model
Gordon, et al. Arch Pediatr Adolesc Med. 2007;161(10):937-
944
Hospital-based CSHN Comprehensive
Primary Care Clinic Costs and Utilization
Berman et al. Pediatrics 2005; 115;e637-e642
Outpatient services had a per child loss; off-set
by increased income from ICU stays; fewer
non-ICU hospitalizations
Elements needed to maintain good follow up rates
 Enrollment of patients prior
to hospital discharge
 Identification of specific
contact person
 Multiple back-up contact
addresses and phone
numbers
 Post-discharge and interim
visits during the first year of
life
 Clinical health and
developmental surveillance
 Maintenance family
involvement with program
 Close communication
with child’s PCP
 Dedicated program
coordinator to track
families
 Reimbursement for
transportation, parking
 Funding to pay for all
of the above
NICHD Workshop. Pediatrics 2004; 114(5):1377-1397
Recommendations
 Resident and fellow education on care of the high risk infant care
 Continuing medical education for primary care providers (PCPs)
 Tools to support the PCPs in caring for HRI
 National resource and needs assessment to better define the
landscape of primary and HR FU care across the US
 Consensus guidance for PCPs, states and insurers around the
components FU care for high risk infants
 Registry that would allow for tracking of this specific population
of infants
 Provincial/state and national population-based registries
Complications of prematurity and
high risk birth
What are the continuing health issues for
preterm and low birth weight children?
 Respiratory
 Chronic lung disease,
respiratory infections
 Apnea of prematurity
 SIDS
 Physical growth
 Feeding difficulties
 Oral health
 Incomplete catch up growth
in short and long term
 Cholestasis
 Anemia
 Hypothyroidism
 Ophthalmology
 Vision loss and impairment
 Reduced visual acuity, color
vision, contrast sensitivity
 Field defects, eye motility
disorders
 Long term affects on pain
perception
 Scars, deformations,
hernias
 Bone mineralization
Complex Medical Outcomes
 58% hospitalized > 1
time(s); 49% > 2 times
 Respiratory (+ apnea) >
surgery (+ laser) >
FTGW
 During a
hospitalization more
likely to be admitted to
a PICU, use chronic
technologies
(ventilator, GT-tube,
tracheostomy, PN)
 Post-anesthesia
complications
 Apnea
 Hypertension
 Increased incidence
related to thrombi,
renovascular, CLD
 Late adolescence
Higher BPs awake and
during sleep
Unrelated IUGR/SGA
Complex Medical Outcomes
 At 18 Months
 Gastrostomy 8%
 Tracheostomy 3%
 Oxygen 6%
 Ventilation at home 2%
 50-60% hospitalized at least once
Growth and Nutrition
Incomplete Catch-up Growth
 IU rates of weight gain not
typically achievable
 At hospital discharge for
2000 gram infant
 About 30 g/d
 Patterns growth
 AGA – growing along IU
growth curve
 AGA – falling below curve
 SGA – catch up growth
 SGA –remains below curve
Babson-Benda Growth Charts
Physical Growth
Correcting for Prematurity
Who? Babies < 37 (or < 35) weeks’ gestation
 How long?
 Adjust at least through 24 months if < 1500 grams;
correct through 12 months for 1501-2500 grams
 How?
 Assume a 30 day month (GA 29 weeks)
Date of testing Yr ‘06 Month 09 Day 9
Date of birth Yr ‘06 Month 03 Day 25
Chronologic age 5 14
Adjustment for PT 2 21
Corrected age 2 23
Round to the nearest week: CA = 2 mo. 3 w.
 Alternatively: count exact time from birth
Monitoring Growth: Growth Charts
 Larger, stable infants may show
catch up growth in the first 1-2
years
 VLBW and ELBW infants may
not catch up in the first three
years
 As a group tend to remain
permanently lighter and shorter
than infants born at term
 Emerging data that too rapid
early growth in PT children has
adverse long term CV effects
(Singhal et al., 2004)
 2000 Revised CDC Growth
Charts
 Includes data on babies
>1500 g (adjust for CA)
 Excludes < 1500 g
 IHDP growth charts
 Best available reference,
though reflects only 985
VLBWI from 1980s
(changes care, growth
patterns, outcomes)
 < 1500 G use IHDP or
CDC based on adjusted age
until 24 mos. CA
Comparison of CDC growth chart and
IHDP VLBW - Girls
Solid line = CDC
Dotted line = IHDP
Sherry B, Mei Z, Grummer-Strawn L, Dietz WH. Evaluation of and recommendations for growth references for very low birth weight (< or =1500 grams)
infants in the United States.Pediatrics. 2003 Apr;111(4 Pt 1):750-8.
Assessment of individual
growth trends is important for
each infant!!
For VLBWI: No single reference growth curve better. (Sherry et al: Pediatrics
2003; 111: 750)
Patterns of Growth of VLBW infants
 All growth parameters less than full term infants
 Most LBW and PT infants catch up by 2-3 years of age
 Smaller, less mature and sicker infants may take up to 7-8
years to catch up
 Individual infants should follow their own curve
 Weight gain:
 20-25g/d up to 3 mo adjusted
 15-20g/d 3-6 mo adjusted
 HC is 1st
to catch up > weight > length
 HC < 10th
centile at 8th
mo adjusted age associated with poor
cognitive function
 Wt and length < 10th
centile at 2 yrs will remain < 10% at 5-
8yrs
Growth in NICU Influences
Neurodevelopment and Growth of ELBW
Infants (NICHD 2006)
Growth as variable in logistic regression model
includes: Gender, Race, GA, SGA, Mat.
Edu.,Severe IVH, PVL, RTBW, NEC, Late onset
sepsis, BPD, Postnatal steroids and center
Poor Weight Gain Increases Odds for Poor Outcomes
Ehrenkranz RA, et al. Pediatrics 2006;117:1253-61.
1.00.2 10.0 50.0
Odds Ratio (95% Confidence Interval)
2.53 (1.27–5.03)
2.25 (1.03–4.93)
8.00 (2.07–30.78)
ELBW infants, in-hospital growth: 12.0 v. 21.2 g/kg/day
Cerebral palsy
Bayley MDI <70
MDI=Mental Development Index
Neurodevelopmental
Impairment
Poor HC Growth Increases Odds for Poor Outcome
Ehrenkranz RA, et al. Pediatrics 2006;117:1253-61.
1.00.2 10.0 50.0
Odds Ratio (95% Confidence Interval)
3.64 (1.85–7.18)
2.33 (1.10–4.95)
4.10 (1.24–13.59)
ELBW infants, in-hospital HC growth: 0.67 v. 1.17 cm/wk
Cerebral palsy
Bayley MDI <70
HC=Head circumference
MDI=Mental Development Index
Neurodevelopmental
Impairment
Neuro/Intellectual Function at School Age with
Subnormal Head Circumference at 8 Months
Total Population Neurologically Intact
Condition
(criteria) (8 years)
HC
(nl)
(216)
HC (subnl)
(33) 13%
RR HC (nl)
(199)
HC (subnl)
(26)
RR
Neurological Impairment
(major neurological
abnormality)
~8% 21% 2.69* – – –
Low IQ
IQ <70
IQ <85
3%
27%
24%
52%
7.48†
1.91†
2%
26%
12%
46%
5.74
1.80
Limited Academic Skills
(read/math/spell std score
<80)
31% 56% 1.81† 28% 54% 1.88
* P<.05 by chi square test
† P<.01
HC subnormal; 1.1 versus 1.2 kg,
higher neonatal risk scores (1977-1979)
Hack. N Eng J Med. 1991.
Brain Growth and Neurodevelopment
Summary of Neurodevelopmental Outcomes: appropriate-for-
gestational-age (AGA) and small-for-gestational-age (SGA)
infants who attained adequate v. delayed extrauterine growth*
Neurodevelopmental Adequate Delayed extrauterine
outcomes in subgroups catch-up growth growth (EUGR)
of VLBW premature infants
AGA Good neurodevelopmental Decreased mental and
outcome motor function
SGA Good neurodevelopmental Decreased motor function
outcome (similar to AGA with
adequate catch-up growth
VLBW, very low birthweight.
*9 and 24 months
Catch - down
Catch - up
Latal-Hajnal et al J Pediatr 2003;143(2):163-70
Nutritional Support:
Nutritional intake ≠ Growth requirements
 When to transition to standard formula?
 Duration up to 12 months age, or
 Achieve at least 25-50% (v. 90%) on standard growth
curve for CA
 Minimum recommended weight gain
 20g/d term-3 mo CA
 15g/d 3-6 mo CA
 10g/d 6-9 mo CA
 6g/d 9-12 mo CA
 1kg/6 mo 1-2 yrs
 .7kg/6 mo 2-5 yrs
 Minimum acceptable growth
 Length < 0.5 cm/wk Head < 0.5 cm/wk
 Caloric intake 105-130 kcal/kg/d
Nutrition: Breastmilk or Formula
Recommended* Breast Milk Similac Neosure ®
(22cal/oz)
Enfacare®
(22cal/oz)
Calories/kg/day 110-130 100 110 110
Protein g/kg 3-3.6 1.5 2.9 3.0
Fat g/kg 5-6 5.8 6.3 5.8
Carbohydrate
g/kg
10-13 10.8 11.3 11.8
Calcium mg/kg 175 42 115 132
Phosphorus
mg/kg
91 21 68 72
Iron mg/kg 1.7-2.5 0.04 2 2
Vitamin D IU/kg 150-400 3 78 88
Use of Preterm discharge formulas till 9 months adjusted age results in greater linear growth , weight gain, and bone mineral content than
term formulas; *Calculated at 150ml/kg/d
Breastmilk Feeding after Discharge
 Adequate caloric and nutrient intake if feeding
breastmilk ad libitum and ingesting > 180
cc/kg/day
 IQ advantage: + 8 points (~1 SD)
 In comparison with PT infants fed post-discharge
formula (PDF) or term formula, infants receiving
BM had similar weight gain at 9 mos. to term
formula-fed PT infants (Lucas, Pediatrics 2001; O’Connor, JPGN 2003)
 Weight gain greater from 1.5 to 9 months w/ PDF and
term formula
Special Formulas
 24kcal formula - Similac ®
Special Care ®
with iron
 For short term use after discharge for babies with osteopenia
 CLD or SGA
 Soy formula (Isomil, Prosobee) not recommended <40wks CA (low PO4)
 Cow Milk Protein allergy:
 Nutramigen, Alimentum (hydrolyzed protein)
 Neocate, Elecare (amino acid base) : for severe allergy, heme + stools on above
formula
 Malabsorption:
 Alimentum, Pregestimil (available as 24kcal)
 Neocate, Elecare : for heme + stools on above formula or fails to tolerate them
 Supplementation - if intake is inadequate and calories required
 Vegetable oil 9 cal/ml
 MCT oil 7.6 cal/ml
 Microlipid 4.5 cal/ml
 Dry baby cereal 10cal/tsp
 Polycose 2 cal/ml
Transitional Formulas – Nutritional Supplements
 Continue post-discharge preterm formula for 9-12 months (at
least 40 wks CA) based on growth (ESPGHAN commentary in
JPGN 2006)
 Benefits:
Enhanced growth if continued beyond 12 weeks
Increased mineral intake (Ca, P)
 Transition to 30kcal/oz toddler formula (Pediasure) after 12
mo chronologic age if weight still < 5%
 Mix half and half w/ whole milk (25 kcal/oz)
 Nutren Jr. if sensitive to cow milk protein
 Whole milk w/ Carnation Instant Breakfast added (one pack/8
oz = 30 kcal/oz)
Supplementing Human Milk
 EnfaCare or Neosure to fortify Human Milk
 Decide desired caloric concentration, Kcal/oz
 Measurement of powdered formula (packed, level teaspoon)
 Total amount of breast milk in ml (measure breast milk
first, then add powder)
Caloric density Added Formula HM volume
22 Kcal/oz 1 teaspoon 180 ml (6 oz)
24 Kcal/oz 1 teaspoon 90 ml (3 oz)
27 Kcal/oz 2 teaspoons 90 ml (3 oz)
Vitamins and Minerals
 Infants fed breastmilk or
standard formula:
 Multivitamin 0.5-1 ml/d
 Until intake > 450 ml/d or
2.5 kg body weight
 Vitamin D 400-800 IU/d
(continue for exclusively
breastfed)
 Iron supplement 2 - 4 mg/kg/d
(exclusively breastfed for 1-2
mo)
 Additional iron 4 – 6 mg/kg/d
if anemia - screen CBC and
retic. as clinically indicated
 Fluoride supplements at
6 months if exclusively
breastfed, ready to feed
formula or formula not
prepared with fluoridated
water
 Infants receiving
transitional formula do
not require vitamin
supplementation
Feeding Issues
 Complicating health
conditions
 GERD
 BPD
 Apnea
 Inappropriate feeding
regimens
 Poor or slowing growth
velocity – increased energy
expenditure
 CLD/RAD
 Abnormal tone (high/low)
 Poor feeding due to:
 Poor oromotor
coordination
 Difficulty coordinating
suck, swallow,
breathing
 Palatal grooves
 Feeding fatigue
 Feeding aversion
 Difficulty w/ new
textures, chewing
Oral Feeding Aversion: Tactile Defensiveness
 Caused by multiple noxious stimuli around the face
during neonatal period
 Intubation, feeding tube, suctioning, tracheostomy changes
 Coupled with lack of pleasant oral experience and/or
GERD
 Clinical Picture:
 Clamp down mouth, turn head away, push bottle or spoon,
arches and cries during feeding. May lead to inadequate
nutrition
 Therapy: Will need speech therapy
 May take months to years to properly feed orally
Gastric Tubes
 Placed endoscopically or surgically
 Standard tube placed initially 8-12 wks (percutaneous)
or 6-8wks (surgical) then replaced with button
 Button has antireflux valve requiring special apparatus
to vent air out of stomach if fundoplication
 Problems: leakage, irritation , migration, accidental
removal
 Accidental removal:
If < 4 wks : place 10F red rubber catheter immediately by parent
and contact surgeon
If > 4 wks : parents can replace balloon gastrostomy. Button
needs ED visit within 1st
24hrs.
GERD
 Signs and symptoms:
 Vomiting
 Gagging/Retching
 Feeding aversion
 Irritability after feeding
 Failure to thrive
 Reactive airway disease
 Recurrent Pneumonia
 Apnea/Bradycardia
 Sandifer syndrome: truncal
arching, extension of head
and neck into opisthotonic
posture, with possible side-to
side twisting of head.
 Diagnosis:
 Extended timed pH-probe
 Radio-labeled milk scan
 Barium swallow will only
r/o anatomic cause
Management of GERD
 Medical
 Non pharmacological
 Semi upright position ½ - 1hr
after feeds in 30-45° angle
prone - not car seat
 Thicken feed - Rice cereal
 Small frequent feeds
 Minimize stimulation during
and after feeds
 Decrease air swallowing
 Pharmacological
 Reglan
 H2 receptor antagonists:
Cimetidine and ranitidine
 Antacids: Maalox and
Mylanta
 Surgical
 Nissen Fundoplication
 Indication:
Aspiration or
esophagitis
Associated pathology
eg. CP, MR
 Complication: 10-30%
Bloating
Loosening of wrap
Esophageal dysmotility
Perforation
“Red Flags” indicate need for further workup
 Wt <5th
centile on CDC chart
 Wt loss or no wt gain from one month to next
 Significant decline in percentiles (>2)
 Deviation from normal weight gain
 < 20g/d up to 3 mo
 <15g/d 3-6mo
 Wt for length < 5th
or > 95th
 Deviation from normal HC growth
 0.5 cm/wk up to 3 mo
 0.25 cm/wk 3-6mo
 Disproportionate head growth
Introduction of Solids
 Factors associated with weaning (Fewtrell et al., 2003)
 Formula fed infants tend to receive solids earlier
 PT infants more likely to receive solids at both 6 and 12 wks post term
compared w/ AGA FT
 Formula feeding and maternal smoking associated w/ earlier introduction
solids
 Introduction solids between 4-6 months CA + readiness skills
 Postural control (head, trunk), able to eat from spoon
 Introduction > 4 solids before 17 wk CA increased risk for
eczema/atopy in PT (OR 3.49) (Morgan et al., 2003 [controversial; case
series])
 If one/both parents atopic, onset in infant by 10 wks CA (OR 2.94)
Growth in Later Childhood-Adolescence
 Doyle et al.: Mean wt. 1 SD below mean at 2 yrs, 5 yrs, 8 yrs;
catch up by 14 yrs
Girls aver. 7.3 kg less; boys weigh 8.3 kg less
Height: 4.5 cm (girls) -5.8 cm (boys) less at 14 yrs
 Saigal et al. (2001): at 12-16 yrs
11% girls < 3%
 8% boys < 3% (NBW FT 1%)
 Hack et al. (2003): VLBW females catch-up by 20 yrs v.
VLBW males remain shorter and lighter
Immunizations
Immunizations
 AAP recommends regular doses of immunizations be
given at the infant’s chronological age regardless of
weight or prematurity.
 DTaP, Hib, IPV, MMR, Varicella, Prevnar
 Hepatitis
 Rotavirus
 Influenza
 Palivizumab
Hepatitis B
 HBsAg neg mother:
 Preterm
< 2kg : delay immunization until prior to discharge.
If <2 kg at discharge delay until 2 months.
4 doses
 HBsAg pos mother:
 HBIG + Hep B vaccine at birth
 Post-vaccination testing
 If <2kg should not count initially vaccine in 3 dose
schedule
 HBsAg unknown:
 Give 1st
dose Hep B vaccine at birthHBIG with first 12h
Influenza
 After 6 mo age
 High risk of respiratory illness e.g. BPD, mechanical vent,
heart disease
 2 doses:
 0.25ml IM
 One month apart
 Between October and mid-Nov
 Household contacts should be given vaccine
RSV Prevention
 Significant morbidity and re-hospitalization for preemies with BPD, on
ventilator
 Palivizumab (Synagis):
 IgG monoclonal antibody
 55% reduction in RSV hospitalization in preemies
 Indication:
 Preemies <32 wks GA (<28wk GA for 1 yr, 29-32 wk GA for 6mo)
 BPD within 1st
2 yrs of life who require diuretics, bronchodilators, home oxygen,
ventilation
 Asymptomatic, acyanotic congenital heart disease
 32-35 wk GA with risk factors eg. neurologic, resp disease, young siblings,
attendance of day care, smoke exposure
 Given monthly IM
 October- April in this region
 RSV IVIG (Respigam) : given IV , provides higher titer but given in large
volume, used in immunodeficient patients or severe CLD likely to develop
serious sequelae from any viral resp illness.
May consider post-op booster dose
Vision and Hearing
ROP Screening
 Who gets screened?
 Bwt , 1500g or GA , <30 wks
 Select infants 1500-2000g
w/ unstable course
 ROP typically begins to
regress by 41-43 weeks
PMA
 Frequency exams
 Weekly: ROP that may
soon progress to threshold
ROP
 ROP less than threshold
zone I
 ROP in zone II
 Q 2wks
 Less severe ROP in zone
II
 Q2-3 wks
 Incomplete retinal
vascularization, but no
ROP
10 Year Follow-up CRYO-ROP Study
 Treated eyes
 Better distance and near visual
acuity
 Better anatomic status of
fundus- normal appearing
 Less blindness
 Late retinal detachment ~
14yrs of age more common in
untreated eye
 ETROP Trial (2003, 2004)
 Early Rx
 ↓ Risk poor vision
 ↓ Structural damage eye
 Effect ablative therapy for
threshold ROP
 Preserves peripheral vision
 Reduction ~5-7% in visual
field area in treated eyes
 27-35% deficit in visual
field area in untreated eyes
with severe ROP
 Contrast sensitivity
 33% reduction in
unfavorable CS results with
cryosurgery
Visual Sequelae of Preterm Birth:
Assess EOM, corneal light reflex, ability to fix;
Ophthalmologist evaluation by 1 year of age
 Poor vision detected in
~2.5% VLBW children
 Visual function
 Reduced visual acuity,
color vision, contrast
sensitivity
 Field defects, eye motility
disorders
 Reduced visual acuity
 47% all VLBW children
 34% VLBW children
without ROP or
neurological complications
 Strabismus
 6-fold increase by 10-12 yrs
of age
 Overall incidence 13.5 % at
3.5y for VLBW v. 2% born
at term
 5.9% VLBW children
without ROP/neurological
complications
 Esotropia dominating type
 Secondary functional
amblyopia associated in
many
Hearing Loss in High Risk Infants
 Prevalence permanent HL among
NICU infants 1-3%
 10-20 X general population (v. 0.1-
0.3% all LB)
 Auditory neuropathy/auditory
dyssynchrony common (Berg et al.,
Peds 2006)
 Abnormal ABR, normal OAE
 Normal outer hair cell function
 Abnormal neural function
 No acoustic reflexes
 Poor speech perception
 Fluctuating HL
 If maturational, normalizes bet 12-
18 months
 Known risk factors
 Damage to inner hair cells
 LBW
 Low Apgar score, asphyxia
 ECMO (25% affected; 50%
have progressive loss)
 Ototoxic medications
 GJB2-connexin 26 mutations
 IVH
 Hyperbilirubinemia
 Acoustic (noise) trauma
 Ventilation
 Congenital infection -CMV
 Sepsis, meningitis
 Anatomical malformations
 Family history
pediatrics.org/cgi/doi/10.1542/peds.2007-2333
Science at the heart of medicine
Science at the heart of medicine
Chronic Lung Disease
Respiratory Health: Chronic Lung Disease
 Incidence 15-50% (varies by GA, NICU)
 Oxygen Dependence at 36 wks PMA
 Best predictor LT pulmonary outcome
57-70% at 23 wks Gestation
33-89% at 24 wks
39-61% at 500-800g BWT
 O2 dependence at 1 year of age
GA (w) % Requiring
<23 24
24 13
25 7
Chronic Lung Disease: Associated
Pulmonary Problems
 Early motor development
and feeding
 Motor development
 Low muscle tone
 Decreased tummy time
when on O2
 Poor prone skills
 Feeding
 Increased caloric
requirements
 Tachypnea/fatigue w/
feeding
 GER
 Stridor
 Tracheomalacia
Airway collapse
 Laryngomalacia
Hypotonia
 Upper airway
obstruction/abnormality
Subglottic stenosis
Vocal cord
paralysis/dysfunction
 Persistent central apnea
CLD: Home Oxygen Therapy
 Reduces
 Mortality from SIDS
 Desaturations, pulmonary
hypertension, reversible obstructive
lung disease
 Risk nosocomial infection
 Improves growth,
neurodevelopment
 Need based on monitoring
during all ADL
 During sleep, wakefulness and
feeding/activity
 Infants w/ SaO2 < 90% (<93%
during sleep) need LT O2 therapy
 Keep SaO2 between 92-
94%
 95-98% if pulmonary
hypertension
 Avoid SaO2 < 90% more
than 5% time
 Wean based on 2 hour
challenge
 Able to keep SaO2 > 92%
 O2 flow < 0.02 l/kg/min
 Wean daytime O2 first
Sample O2
weaning protocol
Science at the heart of medicine
Alternate daytime and nighttime
weaning
½ L/min → ¼ L/min → 1
/8 L/min
→ 1
/16 L/min → room air (21% O2)
Infant meets weaning criteria:
1.Maintain SpO2 > 95% during
sleep, while awake and when
feeding
2.Good weight gain
3.No increase in respiratory
symptoms
Bronchopulmonary Dysplasia/CLD:
Care at Home
 Oxygen
 No smoking
 Diuretics
 Bronchodilators
 Airway issues
 Nutrition
 Feeding tolerance
 Higher feedings
 Fluid restriction
 GERD
 Cardiorespiratory
monitors
 ALTE, SIDS
 Home oxygen (long term
O2 therapy)
 Infection
 RSV prophylaxis
 Pneumonia
 Otitis media
Post-Discharge Management CLD
 Monthly or bi-monthly visits
with pulmonary
 Adjust for weight gain for at
least 1-2 months post D/C
 Check chemistries q 2-4 wks
 Wean/let outgrow meds when
off O2
 Wean daytime O2 before
nighttime O2
 Remember palivizumab
therapy!
 Need at least 24 cal/oz formula
(120-140 kcal/kg/d)
 Medications
 Hydrochlorthiazide
20-40 mg/kg/d ÷ q 12h
 Spironolactone
2-4 mg/kg/d ÷ q 12h
 Furosemide
2-4 mg/kg/dose q 12-
24h
 KCL
1-4 mEq/kg/d ÷ q 6-12h
Medications Used in the Management of CLD
 Bronchodilators
 Albuterol (Proventil,
Ventolin)
0.5 cc by nebulizer or
inhaler q 6-12h
 Ipratropium (Atrovent)
0.5 cc by nebulizer or
inhaler q 12h
 Levalbuterol (Xopenex)
0.62 mg respule by
nebulizer
 Anti-inflammatory drugs
 Cromolyn (Intal)
 Inhaler or nebulizer
 Takes 2-4 weeks for
adequate trial
 Inhaled steroids
 Budesonide (Pulmicort)
 0.25-0.5 mg respule q 12-
24h
 Fluticasone (Flovent)
 0.125 mg (1 puff) q 12 h
 Betamethasone
 Oral prednisone for serious
exacerbations
Respiratory Health
 50-80% develop RAD
 10-15% mortality rate post surfactant – sudden death
common
 Lung function improves between 8 and 14y
 At 14 yrs:
 Clinical respiratory health comparable to NBW children
 Rate asthma not significantly different
 Overall lung function essentially normal
 Lower for all air flow variables, but no difference in lung volume or air
trapping
 No differences between ELBW children with/without BPD
 ELBW teens had lower aerobic capacity, strength,
endurance, flexibility and activity level
 Less previous and current physical activity, sports participation,
poorer coordination (Rogers et al., 2006)
Home Monitoring Indications
 Persistent apnea
 On caffeine
Maintain on caffeine until 44 w PMA
Continue monitoring for 2-4 weeks after discontinuing
caffeine
 Persistent bradycardias with feedings
 Severe GERD
 Infants requiring side or prone positioning
 Have O2 on standby at home
SIDS Risk for Preterm Infants
 Risk
 FT: 1.0/1000
 PT
 2-2.5 kg 3.8/1000
 1.5-2kg 6.4/1000
 < 1.5 kg 7.5/1000
 Full term infants
 SIDS risk greatest at 52.3
weeks PMA
 Preterm
 SIDS risk highest at 50 + 2
w PMA
 24-28 weeks GA
 45.8 weeks PMA
 Apnea appears to resolve
in most PT infants before
age of SIDS deaths
 Apnea > 30 sec resolves by
43 wks
 Monitoring warranted if
significant apnea persists
at time of d/c
 Monitor not needed for
apnea if > 8 days apnea-
free in hospital
SIDS Prevention – PT Infant Sleep Position
 Preterm infant sleep position
 Less frequent use of non-prone (back or side sleeping)
by parents
64% supine at hospital D/C → 35 % at 2mos CA (Adams et al,
1998)
GER was common reason cited for change to prone
 Risk SIDS greatest for infants in unstable side position
or within first 2 weeks of sleep position change for
premature infants (De-Kun et al, 2003)
 Recommendation for healthy PT: supine, safe
sleep practices, smoke free, don’t overheat
 Alternative sleep position- sidelying, arm extended no
longer recommended (OR 3.9 x ↑ risk SIDS)
Oral Health
 Higher prevalence of
enamel defects: 40-70%
 Enamel hypoplasia
96% v. 45%
 Primary teeth
78% v. 20%
 Secondary teeth
83% v. 36%
 Osteopenia
 Not prevented by mineral
supplementation or
vitamin D
 First tooth eruption later in
PT girls than PT boys
 60% > 10 mos. age (< 1kg,
< 31 wks)
 Permanent dentition
 Incisors, molars
 Palatal grooves
 High arched palate
 Speech, bite
Other Health Issues
 Scars and deformations
 Nares
 Notches, septal
damage/deviations
 Skin sloughs, scars, contractures
 Capillary hemangiomas
increase during first year then
fade
 Hernias
 Inguinal, umbilical
 Increased incidence
cryptorchidism and undescended
testis, refer to urologist after 6mo
 Anemia
 Metabolic bone disease
(osteopenia)
 Inadequate dietary phosphorus
 Diuretics
 RDA Vitamin D 400 IU/d
 Malabsorption/ rapid transit
time
 Short bowel syndrome
 Cholestasis
 Elemental formula containing
MCT oil
 Supplemental fat-soluble
vitamins (A, D, E, K)
 Ursodeoxycholic acid
Other Health Issues
 Orthopedic:
 Internal or ext rotation of LE corrects when baby walks
 Ankle clonus, toe standing, truncal hypotonia, shoulder
girdle hypertonia usually resolve by 18 mo
 Hand preference before 18 mo may indicate hemiparesis
 Positional plagiocephaly
 Position head on rounded side
 Torticollis
Neck exercises w/ diaper changes, 3 repetitions, 10 count each
 Cranial orthotic – bands, helmet if severe deformation or
no improvement
Neurobehavior and Neurodevelopment
Science at the heart of medicine
Behavior and Pain Perception:
Acute Consequences
 Stress responses
 Hormonal, behavioral,
and autonomic
 Changes in HR, RR,
BP, blood vessel tone
 Changes in CBF, brain
blood volume and
oxygen delivery
 ↑ risk IVH and PVL
 Short-term sequelae of
prior noxious stimuli
 Lower threshold to tactile
stimulation
 Hypersensitive to pain
 Chronic pain responses to
local injury
 Link with cumulative
painful procedures and
subsequent pain and stress
behaviors
 ↓ behavioral response to
additional acute painful
events at 32 wks’ corrected
age
Longer-term Sequelae of Prior Noxious
Stimuli
 Lack of normal pain
sensitivity as toddler
among ELBW children,
esp. < 800g (1lb 12 oz)
 ↓ pain sensitivity at 18
months corrected age
 Child temperament and
reported pain sensitivity
appear independent
 Muted pain response to the
normal pain consequences
of acute injury
 Gross motor coordination and
motor planning less well
developed
 At 4.5 yrs exhibit greater
somatization by parent report
 At 8-10 yrs, overall NBW and
ELBW children had similar
perceptions of pain intensity
 ELBW rated medical pain >
psycho-social pain
 Higher pain intensity to
recreational pain
Buskila et al., Arch Pediatr Adolesc Med 2003; 157: 1079-1082
Neurological Outcomes
 Early developmental
problems related to
brain immaturity
• Autonomic instability
• Abnormal state
regulation and
behavioral organization
• Motor problems – lack
of graded flexion
 Late – abnormal brain
maturation
• Extreme immaturity or
brain injury
• Risk for longterm
cognitive, speech,
motor, vision, behavior
and attention problems
Functional Outcomes
 Functional limitation
 Restriction of ability to
perform an essential activity
 Self-care
 Mobility and locomotion
 Communication
 Socialization
 Compensatory dependence
 Need for services above
routine
 Percentage children with a
health problem affecting >
1 activity of daily living
 1001-1500g 34%
 < 1000g 46%
 School age outcomes
Standard Placement 50%
Resource 30%
Special Education 20%
Repeat a grade 16%
Minor Neurodevelopmental Difficulties
 Cognitive
 Mean IQ 8-10 points lower than FT
 Borderline intelligence – IQ 70-84
750-1500g 20%
<750g 33%
 Learning deficits
 45% - 65% v. 11% FT
 Reading, spelling, math skills
 Memory tasks and processing speed
CNS Complications in Preterm Infants
 Intraventricular Hemorrhage
 Incidence ↑ with small GA
 Screening Head Ultrasound or
CT/MRI
 Complications : hemorrhagic
cerebral infarct, porencephalic
cyst, hydrocephalus,
ventriculomegaly, PVL
 Assess muscle tone – usually
high tone in preemies up to
12-18 months.
 Serial US, CT/MRI
 Early intervention
 Hydrocephalus
 Assess Head
circumference and signs
of ↑ ICP once/month if
pt has Hx of IVH
 DD: catch up growth –
Hydrocephalus HC
>1.25cm/wk, signs of
ICP, changing
neurological status
 Serial US if S+S of ↑
ICP or ↑ HC
CNS Complications in Preterm Infants
 Periventricular leukomalacia:
 Ischemic infarction of white
matter adjacent to lateral
ventricle
 Occurs in 25% infants <1500g
 Diagnosed by US or MRI as
white matter cysts as early as 1st
wk if insult occurs in utero
 Usually 2-8wks after insult
 Closely associated with CP,
developmental delay, epilepsy,
visual impairment
 Assess development and visual
assessment within first 6mo,
Early intervention
 Microcephaly
 HC < 3rd
centile, if HC less
than wt/length centiles, >2
standard deviations below
mean
 Primary or acquired
 Major risk factor for Mental
retardation
Preterm Birth Affects All areas of the Brain at
8 Years
 Whole brain
 Cerebral gray
 Subcortical gray
 Cerebral white
 Most vulnerable areas
of PT brain
 Sensorimotor cortex
 Premotor cortex
 Mid-temporal cortex
 Cerebral volumes
related to
 FS IQ, verbal IQ,
performance IQ, Peabody
picture vocabulary test
GA, VM, PVL, chorioamnionitis
significantly related to brain volume
NEJM
What about preterm infants with milder
or no evidence of injury?
 Lower grades IVH I-II poorer ND outcome at 20
mos CA than infants with no IVH
 Higher rates MDI << 70 (45%, OR 2), major neuro
abnormality (13%, OR 2.6), ND impairment (47%, OR
1.83) [Patra et al., 2006]
 Among low risk preterm infants 28-33 weeks GA
with normal cranial US, MRI reveals:
 At 42 weeks’ postmenstrual age, gray matter volumes
were not different between preterm and term infants
 Myelinated white matter was decreased, as were
unmyelinated white matter volumes in the region
including the central gyri (Mewes et al., Pediatrics 2006)
Factors Associated with Neurodevelopmental Morbidity
in Infants with Normal Cranial Ultrasounds
Science at the heart of medicine
Developmental Disabilities
 Developmental screening :
Medical history, parent
interview, standard tools,
clinical observation
 Document progress
 Detect delays
 Refer for Early intervention
 Always use adjusted age up to
2.5 yrs
 Learning difficulty
 At school age
 IEP
 Behavioral problems:
 1st
year: Irritability,
irregularity in behavior, sleep
disorders
 Toddlers : willfulness,
hyperactivity, fearfulness
 School age: ADHD,
aggressive behavior,
withdrawal, limited social
skills
 Autism spectrum disorders
Neuromuscular Assessment
 Motor milestones
 Evaluate quality of movement (variety, fluidity, range, asymmetry,
initiation, grading, endurance and strength)
 Sequential assessment
 Tone/posture
 Hypertonia> hypotonia > dystonia
 Signs of hypertonicity, hypotonia dystonia
 Developmental and postural reflexes
 Reflexes should disappear by 4-6 mo of age to allow normal development –
otherwise suspect CP
 Balance and protective reactions
 Reactions should appear by 4-9 mo of age when infants balance is
threatened
 Behavior
 Sensory integration issues
 Social skills/Play
General Developmental Screening Tools
 Battelle Developmental Inventory Screening Tool (BDI-
ST)
 Child Development Inventory (CDI)
 Bayley Infant Neurodevelopment Screen (BINS)
 Denver II
 Cognitive Adaptive Test/Clinical Linguistic Auditory
Milestones Scales (CAT/CLAMS)
 Early Language Milestone Scale
 Ages and Stages Questionnaires and ASQ-SE
 Parent’s Evaluation of Developmental Status (PEDS)
 M-CHAT (autism/ASD screen)
Frequent Neurodevelopment
Abnormalities
 Autonomic
instability/behavioral
disorganization
 Jittery
 Mottles easily
 Difficulty transitioning
between states
 Poor self-calming
 Stress signs
 Apnea/bradycardia
 Increased risk ASD
 Sensory motor integration
problems
 Abnormal muscle tone
 Hypertonia/hypotonia
 Lack of graded flexion
(imbalance between
flexion-extension)
 Delayed milestones –
poor movement quality
 Delayed cognition
 Delayed speech
development
Sensory Motor Integration
 Secondary to abnormal early stimulation
 Light, noise, touch, pain, oral
 Clinical symptoms in infants-toddlers
Feeding problems/aversion
Difficulty transitioning to solids (textures/tastes)
Excessive mouthing objects (sensory seeking behaviors)
Sensitivity to different stimuli (feet)
Grass, sand, carpet
Toe-walking without socks
Hyperactivity
Delayed language development
Common Motor Abnormalities
 Low central (truncal)
tone
 Poor head control
 Poor prone skills
 Shoulder retraction
 Wide base of support in
sitting
Movement
forward/backward only
No reach to side or
rotation
 Imbalance
flexion/extension
 Arching, pushing into
standing when held or
positioned into sitting
 Poor transitional skills
Rolling, sitting, standing
Static sitter
Tight muscle groups
 Frog legged
 Torticollis
Supporting the Family
Family Support
 Ideally parents involved prior to discharge in
care of baby
 At visit:
 Schedule longer visit
 Be aware of parents concerns
 Give careful explanation and clarification
 Be aware of families financial resources and support
system
 Special attention to single parents
 Assess for signs maternal postpartum depression
Impact of Preterm or Sick Infant
Birth
 Parental stress and distress
 Parental perception of infant
vulnerability
 Technology dependence at
home
 Parenting - bonding, infant
attachment
 Perceived parenting
competence
 Difficult to find appropriate
child care
 Lack of respite
 Costs of care
 Multiple provider visits
 Medical bills
 Lost work
 Impact on family
functioning
 Divorce, single parenting
 Sibling issues
 Child
neglect/maltreatment
 Vulnerable child
syndrome
 Family and friends don’t
understand
Taylor et al., Arch Pediatr Adolesc Med 2001; 155: 155-161
Effect of Neglect on Outcome at
< 1000 gm Birth WeightCognitivezscore(SDI)Cognitivezscore(SDI)
0.00.0
-0.5-0.5
-1.0-1.0
-1.5-1.5
-2.0-2.0
-2.5-2.5
1 year1 year 2 years2 years 4 years4 years
0.50.5
No referral for neglectNo referral for neglect
Any referral forAny referral for
neglectneglect
Substantiated referralSubstantiated referral
for neglectfor neglect
Strathearn 2001Strathearn 2001
What do “long-term outcomes” mean to the
families?
 What we expect for child and
family v. what family expects for
the child and themselves
 Impact of high risk birth, sick
infant, and/or multiple gestation
on family dynamic and family
functioning
 Strategies
 Listening to and empowering
parents
 Reassurance
 Respite
 Effects on parents and their
perception of themselves as
parents
 Trajectory of motherhood and
“motherhood interrupted”
 Supporting parents of a
chronically ill or disabled child
 Adaptation to the crisis
 Normalization
 Chronic sorrow
 Fluctuation between states
Information and Resources Needed by Families
 Support for their role as
parents
 Understanding preemie
development
 Physiologic, motor, states of
consciousness, attention,
self-regulation
 Avoiding hypervigilance -
vulnerable child
 Negotiating transitions and
school challenges
 Social support network
 Family, friends, co-
workers
 Community resources
 Parent support
programs/networks
 Health insurance,
programs for children
w/ special health care
needs
 Respite Care
Adolescent and Adult Issues of
Premature Infant
Adolescence to Young Adulthood
 Most motor difficulties, if persistent are less
problematic as child adapts
 Increasing complexity of tasks
 LD persist in 30-40%
Math most challenging
 Nearly 50% ELBW children require PT or FT special
educational assistance
 Grade repetition in 20-30%
 Attentional problems less taxing as children grow
older
 Delinquency and risk-seeking behaviors less common
among PT compared w/ FT children
Transition to Adulthood
Science at the heart of medicine
Transition to Adulthood
 Intellectual and academic achievement
 Mean IQ 81-98
 IQ < 85 19-47%
 Completed HS/GED 56-85%
 Post high school (secondary) 37-38%
 Work status
 Fully employed 48%
 Unemployed 14-26%
 Chronic illness 47%
 Neurosensory impairment 12-28%
 Vision 37%
 Retinal detachment 4-7%
Science at the heart of medicine
Behavioral Outcomes and Evidence
Psychopathology at 20 Years of Age
 VLBW men
 Fewer delinquent behaviors
 No differences in
 Internalizing
 Externalizing
 Total problem behaviors
 Parents report
 More thought problems
 More attention difficulties but
not more ADHD
 VLBW women
 More withdrawn behaviors
 Fewer delinquent behaviors
 Internalizing behaviors
(anxious/depressed,
withdrawn) borderline clinical
cut-off (30% v. 16%, OR 2.2)
 Parents report more
anxious/depressed (OR 4.4),
withdrawn (OR 3.7) and
attention problems (OR 2.4)
Hack et al., Pediatrics 2004; 114: 932-940
References
 Bernbaum J. Preterm infants in Primary Care: A guide to office management.
 Ritchie S. Primary care of the premature infant discharged from the neonatal
intensive care unit. MCN Am J Matern Child Nurs. 2002 Mar-Apr;27(2):76-85
 Sherry B, Mei Z, Grummer-Strawn L, Dietz WH. Evaluation of and
recommendations for growth references for very low birth weight (< 1500 grams)
infants in the United States. Pediatrics 2003 Apr;111(4 Pt 1):750-8.
 Brodsky D, Ouellette MA. Primary Care of the Premature Infant. Saunders Elsevier
Publisher, Philadelphia, 2008.
 Campbell DE, Imaizumi SO, Bernbaum JC. Health and Developmental Outcomes
for Infants Requiring Intensive Care, in McInerny TK, Adam HM, Campbell DE,
Kamat DM, Kelleher KJ, eds. American Academy of Pediatrics Textbook of
Pediatric Care, Elk Grove Village, IL: American Academy of Pediatrics, 2009, pp
852-867
 Bernbaum JC, Campbell DE, Imaizumi SO. Follow up Care for the Graduate From
the Neonatal Intensive Care Unit, in McInerny TK, Adam HM, Campbell DE,
Kamat DM, Kelleher KJ, eds. American Academy of Pediatrics Textbook of
Pediatric Care, Elk Grove Village, IL: American Academy of Pediatrics, 2009, pp
867-882
Science at the heart of medicine
Care of the Moderate and Late
Preterm Infant
What about the larger low birth weight
infant?
 LBW (1500-2499g) associated with 1.38 greater
risk of special health care needs (SHCN)*
 Significantly greater
Use/need for medication
High usage HC services
Any chronic condition
LD
Emotional/behavioral problem
 Higher rates of rehospitalization among infants 33-36
weeks’ GA (Escobar et al. Pediatrics 1999)
Most for non-life threatening illnesses
*Stein RK, Siegel MJ, Bauman LJ. Pediatrics 2006; data derived from 2002 National Health Interview Survey
Moderately Preterm Infants: 30-34 weeks
(Escobar et al., Arch Dis Child 2006, Seminars in Perinatology 2006)
 Accounts for 3.9% LB in US and 32% all premature infants
 Experience substantial morbidity
 45.7% req. assisted ventilation
 3.2% req supplemental O2 at 36 wks PMA
 11.2% req hospital readmission within 3 mos.
Higher in males and with CLD
Late preterm infants:
34-36 6
/7 weeks’ gestation
 Study groups full term and near term infants with
comparable Apgar scores
 Larger preterm infants had more:
 Temperature instability
 Hypoglycemia
 Respiratory distress + need for O2/ asst. ventilation
 Jaundice
 Frequent sepsis evaluations
 More IV fluids
Wang et al. Pediatrics 2004: 114:372-376; Escobar et al., Seminars in Perinatology 2006
Higher rates of c-sections and inductions
among singleton live births: US 1992 - 2002
March of Dimes Perinatal Data Center, 2005
C-sections
Inductions
34-36.6 weeks
in 2002:
C/S: ~ 28%
Induction: ~ 18%
What is the impact to infant health from rising
late PTB? Need to separate causes and effects
 Increased morbidities - Higher Neonatal and Infant
mortality:
 U.S. neonatal deaths/1000 live births (2002)
34-36 weeks = 4.1
37-41 weeks =0.9
 U.S. infant deaths/1000 live births (2002)
34-36 weeks = 7.7
37-41 weeks = 2.5
What morbidities associated with
Late PTB?
 Increased immediate morbidities:
 Respiratory distress
 Jaundice
 Feeding difficulties
 Hypoglycemia
 Temperature instability
 Sepsis
 Increased NICU use (and re-admissions)
 Increased cost
 Long term outcome – emerging DATA!
Frequency of RDS, sepsis and apnea:
34 to 36 weeks of gestation
Arnon, et al. Paediatr Perinat Epidemiol, 2001
Clinical Outcomes: Full term v. Late
Preterm
Wang, et al. Pediatrics, 2004
Late Preterm Births: Excess Hospital
Costs
Gilbert, et al. Obstetrics Gynecology, 2003
Multivariant Model for Rehospitalizations
Adapted from: Escobar, et al. Arch Dis Child, 2005 (Kaiser)
75-7875-78 79-8279-82 83-8683-86 87-8987-89 91-9491-94
32-36 Weeks Gestation32-36 Weeks Gestation
Prenatal
Unclassifiable
Hagberg, Acta Paedtr 2000
Birth yearsBirth years
Per1000livebirthsPer1000livebirths
1212
1010
88
66
44
22
00
Prevalence of Cerebral Palsy Over TimePrevalence of Cerebral Palsy Over Time
Peri/neonatal
Educational Outcomes for Children Born
@ 32-35 weeks’ Gestation
 At age 7 yrs (GA 34.3 w)
 25% non-teaching assistant (resource room)
 4% special education, 3% special school or class
 Problems with 32-35w 32w 35w
Writing 32% 50% 33%
Fine motor 31% 50% 33%
Math 29% 42% 31%
Speaking/listening 19% 33% 18%
Reading 21% 25% 22%
Physical education 12% 33% 9%
Behavioral Outcomes for Children Born
@ 32-35 Weeks Gestation
 Huddy et al (UK)-age 7 (mean GA 34.3w)
 19% abnormal hyperactivity score v. population norm
10%
 IHDP at age 8*
 8-12% with serious behavioral problems on CBC v.
expected 2% for general population
Primary Care of the HR Infant: An Analogy
 Eric Larson and Robert Reid: (JAMA 2010; 303:1644-1645)
 “Group Health’s early medical home experience
suggests that patient-centered medical homes can be an
effective model of primary care, but only if health
organizations and systems invest resources, rethink
reimbursement and redesign teams to address the
comprehensive and increasingly complex needs of an
aging population.”

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8 follow up care of high risk new born

  • 1. Science at the heart of medicine Follow-up Care of the High Risk Newborn 6th Neonatal Conference Hot Topics in Neonatal Medicine February 21, 2011 Deborah Campbell, MD, FAAP
  • 2. Faculty Disclosure In the past 12 months, we have not had any significant financial interest or relationship with the manufacturers of the products or providers of the services that will be discussed in my presentation. This presentation will not include discussion of pharmaceuticals or devices that have not been approved by the FDA.
  • 3. Objectives 1. Review management approaches to airway and respiratory problems 2. Discuss the post-discharge nutritional needs for the VLBW or medically complex infant and strategies to promote growth and feeding problems 3. Identify normal and abnormal patterns of growth and development 4. Describe necessary health maintenance strategies for the high risk newborn– immunizations, vision and hearing screening 5. Describe the later childhood, adolescent and adult health and functional outcomes for selected groups of high risk NICU graduates
  • 4. Medical Home Framework  Care that is:  Accessible  Family-centered  Comprehensive  Continuous  Coordinated  Compassionate  Culturally-sensitive  PCP shares responsibility  Benefits  Efficiency Care coordination Limited resources, cost  Timeliness  Effectiveness Problem-solving  Satisfaction Family & health professional  Improved health/functional status
  • 5. Infants who require a medical home  AAP Policy statement: Hospital Discharge of the High Risk Infant (Pediatrics 2008; 122(5):1119)  Preterm infant  Infant with SHCN or dependence on technology  Infant at risk because of family issues  Infant with early anticipated death  Ontario neighborhood study (Wang et al. Arch Pediatr Adolesc Med. 2009;163(7):608-615)  2.3% newborn had > 1 chronic care condition at nursery discharge CV Respiratory Congenital/genetic Renal Neuromuscular GI
  • 6. What are the important timeframes of continuing care for the preterm, LBW child?  NICU discharge criteria  Transition to home and community  Infancy  Early childhood  Late childhood  Adolescence and transition to adulthood  Parent and family support along the continuum of care
  • 7. NICU Discharge Criteria  Able to maintain body temp in open crib  Nippling all feeds well by breast or bottle  Gaining adequate weight  34 weeks’ gestation, ~ 1800 grams  Average PT meets these criteria between 34-38 weeks PMA  PT infants who remain beyond this time may have  More significant CLD  Apnea  Feeding difficulties  Malformations  Other complications of prematurity – surgery  Stable cardiorespiratory status  No apneas or bradycardias for 4-8 days PTD  Home monitoring  Caffeine  Home O2 for infants with  CLD  Severe GERD  Apneas + bradycardias  Car seat safety  ~20% will have desaturations in car seat  Parent rooming-in pre- discharge
  • 8. Health Care for the Preterm Infant  Primary care visits  Within 1 week after discharge  Schedule of visits depends on health issues and parent concerns  Periodic developmental surveillance  Specialty follow up  Cranial sonography at 40 w PMA – PVL (if MRI not done or residual IVH)  Ophthalmology  ROP checks until vasc mature, ROP resolved  Q 6-12 mos. assess visual function/acuity  Hearing  Behavioral audiometry at 8- 10 mos. CA  Periodic developmental screening → Early Intervention Program
  • 9. Transition Points  Informational, support and resource needs change along the health and developmental trajectory  Importance of eliciting from parents/families what they perceive/assess their needs to be for information and support  Parents may be at a different transition point than the professionals May have needs different than what professional perceives as necessary or important
  • 10. Transition Points for Parents: Post-discharge concerns in the first 3 months  Feeding, weight gain, general health/illness and infections  Infant with more significant/complex health conditions  Home oxygen, cardiorespiratory monitoring  Repeated hospitalizations  Negotiating complex health care system  Multiple appointments w/ multiple specialists  At-risk (child find) registry-Early intervention  Communication (partnership building) w/ PCP, specialists, between specialists and PCP, w/ family, friends, others  Parents feeling “abandoned” by NICU staff: child can’t be readmitted; loss NICU support system Slide series courtesy of D. Campbell
  • 11. Transition Points: 3 months to 1 year  Continued concerns about feeding, weight gain and general health  Social interaction and emerging milestones  For a subset of families  Concern about neurological problems: risk of CP  Loss of informal support network  Insecurity regarding what is “normal” for their infant
  • 12. Transition Points: 1-3 years  Motor milestones are progressing  Even among infants with impairments  Generally, infants w/ motor problems continue to improve and make steady progress  Language acquisition a concern for many families w/ preemies  May need EI referral for speech-language/communication problems
  • 13. Transition Points: Preschoolers  Some children socially immature for their age  Attentional problems and hyperactivity may be a problem for 10-20%  Parents should be advised to watch for learning difficulties and seek early remedial assistance  Preschool, nursery or specialized day care programs
  • 14. Transition Points: Middle and Late Childhood  Formal psychometric testing, as a group:  Preterm children perform less well in terms of IQ, reading, spelling, and math  50% perform in normal range  20-30% may present w/ LD  < 26 weeks’ gestation  > 30 weeks’ gestation- fewer problems  Remedial educational assistance required by 30-40%  Behavioral difficulties  Hyperactivity and attentional problems may persist and interfere w/ learning process (parent and teacher reports)
  • 15. Adolescence-Adulthood  Most motor difficulties, if present, less problematic  Learning problems persist in 30-40%  Math most challenging  Nearly 50% ELBW teens require PT/FT special educational assistance  Grade repetition – 20-30%  Attention problems less taxing as grow older  Delinquency and risk-seeking behaviors less common than among NBW FT counterparts  Less drug and alcohol use*  Less satisfied with appearance*  More regular use prescription medication* * Cooke, Arch Dis Child 2004; 89: 210-206Hack et al., NEJM 2002; 346:149-57
  • 16. Components of Follow-up Care  Primary care health  Medical home  Subspecialty care  Ophthalmology  Pulmonary  GI and nutrition  Endocrinology  Nephrology  Audiology  Speech-feeding  Pediatric surgery  ENT  Dental  Physiatry – orthopedics  Neurology – neurosurgery  High risk follow up program  Monitor development of children at risk for emerging delays  Focus on identifying problems as they emerge  Routine screening tests may not identify DD in these children  Periodic screening for sensory, impairment, DD  Evaluation medical, psychological, social factors
  • 17. Components of Health and Developmental Follow up for the Preterm and High Risk Infant Science at the heart of medicine
  • 18. Components of Health and Developmental Follow up for the Preterm and High Risk Infant Science at the heart of medicine
  • 19. Timeline of Neurodevelopmental Child Outcomes 1-3 yrs 4-7 yrs 8+ yrs Cognitive Executive function Motor function Temperament, self-regulation Relationship to parent Behavioral problems Relationship to peers Psychopathology Antisocial behavior School failure NICHD Workshop. Pediatrics 2004; 114(5):1377-1397
  • 20. Role of the pediatrician caring for a preterm or other high risk infant  Managing /coordinating care for discharge diagnoses  Meet families prior to discharge from NICU  Attend discharge planning meeting  Obtain and review discharge summaries prior to 1st office visit  Anticipating new medical problems  Regular primary care issues  Addressing Family Concerns
  • 21. Great Expectations What’s expected of parents  Administration multiple medications  Maintaining difficult feeding strategies and schedules  Appropriate response to an infant w/ poor state regulation  Irritable  Day/night confusion  Sensitive to sensory stimulation  Manage multiple appointments  Manage equipment and other needs  Conduct the rest of their life What’s expected of the PCP  Up to date on current treatments and technology  Know all drug doses and indications for special formulas  Comfortable w/ equipment  Coordinate the “medical” home and early intervention needs
  • 22. Barriers Facing the PCP Providing Primary Care for the HR Infant  Difficult for PCPs alone to provide medical homes for medically complex, fragile infants  Limited familiarity with unusual disorders and their therapies  Incomplete knowledge of available community resources  Distance from tertiary care centers  Poor reimbursement for care coordination  Insufficient time Arch Pediatr Adolesc Med. 2007;161(10):937-944
  • 23. HRI/Preterm Follow-up Clinic  Tertiary center-based or community-based  Comprehensive care v. neurodevelopmental surveillance only  Fragmentation in care  Not a true medical home  Time-limited (24-36 months corrected age)  Developmental surveillance  Is not paid for by most insurances  Covered under EPSDT requirements for Medicaid recipients  Many states do not include these infants under automatic eligibility for early intervention  Screening and surveillance by the PCP required, but not paid for
  • 24. Barriers Noted by Neonatal Programs that Limit Offering Structured HRI Follow up Care  Funding  Cost and insufficient reimbursement  Hospital/department/ division support sustains many programs (Kuppala, et al. personal communication; C. Harrison, VA Neonatal Work Group, 2006)  Qualified personnel  Family compliance with recommended care  Lack of understanding of the need for follow up services  Multiple (competing) health care needs
  • 25.  RN-specialist maintained contact w/ family/care givers and community-based HCPs  Comparable health (growth, hospitalizations) and developmental outcomes (median MDI, PDI) Pediatrics 2007; 119:e947-e957
  • 26. Tertiary Care-Primary Care Partnership Model Gordon, et al. Arch Pediatr Adolesc Med. 2007;161(10):937- 944
  • 27. Hospital-based CSHN Comprehensive Primary Care Clinic Costs and Utilization Berman et al. Pediatrics 2005; 115;e637-e642 Outpatient services had a per child loss; off-set by increased income from ICU stays; fewer non-ICU hospitalizations
  • 28. Elements needed to maintain good follow up rates  Enrollment of patients prior to hospital discharge  Identification of specific contact person  Multiple back-up contact addresses and phone numbers  Post-discharge and interim visits during the first year of life  Clinical health and developmental surveillance  Maintenance family involvement with program  Close communication with child’s PCP  Dedicated program coordinator to track families  Reimbursement for transportation, parking  Funding to pay for all of the above NICHD Workshop. Pediatrics 2004; 114(5):1377-1397
  • 29. Recommendations  Resident and fellow education on care of the high risk infant care  Continuing medical education for primary care providers (PCPs)  Tools to support the PCPs in caring for HRI  National resource and needs assessment to better define the landscape of primary and HR FU care across the US  Consensus guidance for PCPs, states and insurers around the components FU care for high risk infants  Registry that would allow for tracking of this specific population of infants  Provincial/state and national population-based registries
  • 30. Complications of prematurity and high risk birth
  • 31. What are the continuing health issues for preterm and low birth weight children?  Respiratory  Chronic lung disease, respiratory infections  Apnea of prematurity  SIDS  Physical growth  Feeding difficulties  Oral health  Incomplete catch up growth in short and long term  Cholestasis  Anemia  Hypothyroidism  Ophthalmology  Vision loss and impairment  Reduced visual acuity, color vision, contrast sensitivity  Field defects, eye motility disorders  Long term affects on pain perception  Scars, deformations, hernias  Bone mineralization
  • 32. Complex Medical Outcomes  58% hospitalized > 1 time(s); 49% > 2 times  Respiratory (+ apnea) > surgery (+ laser) > FTGW  During a hospitalization more likely to be admitted to a PICU, use chronic technologies (ventilator, GT-tube, tracheostomy, PN)  Post-anesthesia complications  Apnea  Hypertension  Increased incidence related to thrombi, renovascular, CLD  Late adolescence Higher BPs awake and during sleep Unrelated IUGR/SGA
  • 33. Complex Medical Outcomes  At 18 Months  Gastrostomy 8%  Tracheostomy 3%  Oxygen 6%  Ventilation at home 2%  50-60% hospitalized at least once
  • 35. Incomplete Catch-up Growth  IU rates of weight gain not typically achievable  At hospital discharge for 2000 gram infant  About 30 g/d  Patterns growth  AGA – growing along IU growth curve  AGA – falling below curve  SGA – catch up growth  SGA –remains below curve Babson-Benda Growth Charts
  • 37. Correcting for Prematurity Who? Babies < 37 (or < 35) weeks’ gestation  How long?  Adjust at least through 24 months if < 1500 grams; correct through 12 months for 1501-2500 grams  How?  Assume a 30 day month (GA 29 weeks) Date of testing Yr ‘06 Month 09 Day 9 Date of birth Yr ‘06 Month 03 Day 25 Chronologic age 5 14 Adjustment for PT 2 21 Corrected age 2 23 Round to the nearest week: CA = 2 mo. 3 w.  Alternatively: count exact time from birth
  • 38. Monitoring Growth: Growth Charts  Larger, stable infants may show catch up growth in the first 1-2 years  VLBW and ELBW infants may not catch up in the first three years  As a group tend to remain permanently lighter and shorter than infants born at term  Emerging data that too rapid early growth in PT children has adverse long term CV effects (Singhal et al., 2004)  2000 Revised CDC Growth Charts  Includes data on babies >1500 g (adjust for CA)  Excludes < 1500 g  IHDP growth charts  Best available reference, though reflects only 985 VLBWI from 1980s (changes care, growth patterns, outcomes)  < 1500 G use IHDP or CDC based on adjusted age until 24 mos. CA
  • 39. Comparison of CDC growth chart and IHDP VLBW - Girls Solid line = CDC Dotted line = IHDP Sherry B, Mei Z, Grummer-Strawn L, Dietz WH. Evaluation of and recommendations for growth references for very low birth weight (< or =1500 grams) infants in the United States.Pediatrics. 2003 Apr;111(4 Pt 1):750-8.
  • 40. Assessment of individual growth trends is important for each infant!!
  • 41. For VLBWI: No single reference growth curve better. (Sherry et al: Pediatrics 2003; 111: 750)
  • 42. Patterns of Growth of VLBW infants  All growth parameters less than full term infants  Most LBW and PT infants catch up by 2-3 years of age  Smaller, less mature and sicker infants may take up to 7-8 years to catch up  Individual infants should follow their own curve  Weight gain:  20-25g/d up to 3 mo adjusted  15-20g/d 3-6 mo adjusted  HC is 1st to catch up > weight > length  HC < 10th centile at 8th mo adjusted age associated with poor cognitive function  Wt and length < 10th centile at 2 yrs will remain < 10% at 5- 8yrs
  • 43. Growth in NICU Influences Neurodevelopment and Growth of ELBW Infants (NICHD 2006) Growth as variable in logistic regression model includes: Gender, Race, GA, SGA, Mat. Edu.,Severe IVH, PVL, RTBW, NEC, Late onset sepsis, BPD, Postnatal steroids and center
  • 44. Poor Weight Gain Increases Odds for Poor Outcomes Ehrenkranz RA, et al. Pediatrics 2006;117:1253-61. 1.00.2 10.0 50.0 Odds Ratio (95% Confidence Interval) 2.53 (1.27–5.03) 2.25 (1.03–4.93) 8.00 (2.07–30.78) ELBW infants, in-hospital growth: 12.0 v. 21.2 g/kg/day Cerebral palsy Bayley MDI <70 MDI=Mental Development Index Neurodevelopmental Impairment
  • 45. Poor HC Growth Increases Odds for Poor Outcome Ehrenkranz RA, et al. Pediatrics 2006;117:1253-61. 1.00.2 10.0 50.0 Odds Ratio (95% Confidence Interval) 3.64 (1.85–7.18) 2.33 (1.10–4.95) 4.10 (1.24–13.59) ELBW infants, in-hospital HC growth: 0.67 v. 1.17 cm/wk Cerebral palsy Bayley MDI <70 HC=Head circumference MDI=Mental Development Index Neurodevelopmental Impairment
  • 46. Neuro/Intellectual Function at School Age with Subnormal Head Circumference at 8 Months Total Population Neurologically Intact Condition (criteria) (8 years) HC (nl) (216) HC (subnl) (33) 13% RR HC (nl) (199) HC (subnl) (26) RR Neurological Impairment (major neurological abnormality) ~8% 21% 2.69* – – – Low IQ IQ <70 IQ <85 3% 27% 24% 52% 7.48† 1.91† 2% 26% 12% 46% 5.74 1.80 Limited Academic Skills (read/math/spell std score <80) 31% 56% 1.81† 28% 54% 1.88 * P<.05 by chi square test † P<.01 HC subnormal; 1.1 versus 1.2 kg, higher neonatal risk scores (1977-1979) Hack. N Eng J Med. 1991. Brain Growth and Neurodevelopment
  • 47. Summary of Neurodevelopmental Outcomes: appropriate-for- gestational-age (AGA) and small-for-gestational-age (SGA) infants who attained adequate v. delayed extrauterine growth* Neurodevelopmental Adequate Delayed extrauterine outcomes in subgroups catch-up growth growth (EUGR) of VLBW premature infants AGA Good neurodevelopmental Decreased mental and outcome motor function SGA Good neurodevelopmental Decreased motor function outcome (similar to AGA with adequate catch-up growth VLBW, very low birthweight. *9 and 24 months Catch - down Catch - up Latal-Hajnal et al J Pediatr 2003;143(2):163-70
  • 48. Nutritional Support: Nutritional intake ≠ Growth requirements  When to transition to standard formula?  Duration up to 12 months age, or  Achieve at least 25-50% (v. 90%) on standard growth curve for CA  Minimum recommended weight gain  20g/d term-3 mo CA  15g/d 3-6 mo CA  10g/d 6-9 mo CA  6g/d 9-12 mo CA  1kg/6 mo 1-2 yrs  .7kg/6 mo 2-5 yrs  Minimum acceptable growth  Length < 0.5 cm/wk Head < 0.5 cm/wk  Caloric intake 105-130 kcal/kg/d
  • 49. Nutrition: Breastmilk or Formula Recommended* Breast Milk Similac Neosure ® (22cal/oz) Enfacare® (22cal/oz) Calories/kg/day 110-130 100 110 110 Protein g/kg 3-3.6 1.5 2.9 3.0 Fat g/kg 5-6 5.8 6.3 5.8 Carbohydrate g/kg 10-13 10.8 11.3 11.8 Calcium mg/kg 175 42 115 132 Phosphorus mg/kg 91 21 68 72 Iron mg/kg 1.7-2.5 0.04 2 2 Vitamin D IU/kg 150-400 3 78 88 Use of Preterm discharge formulas till 9 months adjusted age results in greater linear growth , weight gain, and bone mineral content than term formulas; *Calculated at 150ml/kg/d
  • 50. Breastmilk Feeding after Discharge  Adequate caloric and nutrient intake if feeding breastmilk ad libitum and ingesting > 180 cc/kg/day  IQ advantage: + 8 points (~1 SD)  In comparison with PT infants fed post-discharge formula (PDF) or term formula, infants receiving BM had similar weight gain at 9 mos. to term formula-fed PT infants (Lucas, Pediatrics 2001; O’Connor, JPGN 2003)  Weight gain greater from 1.5 to 9 months w/ PDF and term formula
  • 51. Special Formulas  24kcal formula - Similac ® Special Care ® with iron  For short term use after discharge for babies with osteopenia  CLD or SGA  Soy formula (Isomil, Prosobee) not recommended <40wks CA (low PO4)  Cow Milk Protein allergy:  Nutramigen, Alimentum (hydrolyzed protein)  Neocate, Elecare (amino acid base) : for severe allergy, heme + stools on above formula  Malabsorption:  Alimentum, Pregestimil (available as 24kcal)  Neocate, Elecare : for heme + stools on above formula or fails to tolerate them  Supplementation - if intake is inadequate and calories required  Vegetable oil 9 cal/ml  MCT oil 7.6 cal/ml  Microlipid 4.5 cal/ml  Dry baby cereal 10cal/tsp  Polycose 2 cal/ml
  • 52. Transitional Formulas – Nutritional Supplements  Continue post-discharge preterm formula for 9-12 months (at least 40 wks CA) based on growth (ESPGHAN commentary in JPGN 2006)  Benefits: Enhanced growth if continued beyond 12 weeks Increased mineral intake (Ca, P)  Transition to 30kcal/oz toddler formula (Pediasure) after 12 mo chronologic age if weight still < 5%  Mix half and half w/ whole milk (25 kcal/oz)  Nutren Jr. if sensitive to cow milk protein  Whole milk w/ Carnation Instant Breakfast added (one pack/8 oz = 30 kcal/oz)
  • 53. Supplementing Human Milk  EnfaCare or Neosure to fortify Human Milk  Decide desired caloric concentration, Kcal/oz  Measurement of powdered formula (packed, level teaspoon)  Total amount of breast milk in ml (measure breast milk first, then add powder) Caloric density Added Formula HM volume 22 Kcal/oz 1 teaspoon 180 ml (6 oz) 24 Kcal/oz 1 teaspoon 90 ml (3 oz) 27 Kcal/oz 2 teaspoons 90 ml (3 oz)
  • 54. Vitamins and Minerals  Infants fed breastmilk or standard formula:  Multivitamin 0.5-1 ml/d  Until intake > 450 ml/d or 2.5 kg body weight  Vitamin D 400-800 IU/d (continue for exclusively breastfed)  Iron supplement 2 - 4 mg/kg/d (exclusively breastfed for 1-2 mo)  Additional iron 4 – 6 mg/kg/d if anemia - screen CBC and retic. as clinically indicated  Fluoride supplements at 6 months if exclusively breastfed, ready to feed formula or formula not prepared with fluoridated water  Infants receiving transitional formula do not require vitamin supplementation
  • 55. Feeding Issues  Complicating health conditions  GERD  BPD  Apnea  Inappropriate feeding regimens  Poor or slowing growth velocity – increased energy expenditure  CLD/RAD  Abnormal tone (high/low)  Poor feeding due to:  Poor oromotor coordination  Difficulty coordinating suck, swallow, breathing  Palatal grooves  Feeding fatigue  Feeding aversion  Difficulty w/ new textures, chewing
  • 56. Oral Feeding Aversion: Tactile Defensiveness  Caused by multiple noxious stimuli around the face during neonatal period  Intubation, feeding tube, suctioning, tracheostomy changes  Coupled with lack of pleasant oral experience and/or GERD  Clinical Picture:  Clamp down mouth, turn head away, push bottle or spoon, arches and cries during feeding. May lead to inadequate nutrition  Therapy: Will need speech therapy  May take months to years to properly feed orally
  • 57. Gastric Tubes  Placed endoscopically or surgically  Standard tube placed initially 8-12 wks (percutaneous) or 6-8wks (surgical) then replaced with button  Button has antireflux valve requiring special apparatus to vent air out of stomach if fundoplication  Problems: leakage, irritation , migration, accidental removal  Accidental removal: If < 4 wks : place 10F red rubber catheter immediately by parent and contact surgeon If > 4 wks : parents can replace balloon gastrostomy. Button needs ED visit within 1st 24hrs.
  • 58. GERD  Signs and symptoms:  Vomiting  Gagging/Retching  Feeding aversion  Irritability after feeding  Failure to thrive  Reactive airway disease  Recurrent Pneumonia  Apnea/Bradycardia  Sandifer syndrome: truncal arching, extension of head and neck into opisthotonic posture, with possible side-to side twisting of head.  Diagnosis:  Extended timed pH-probe  Radio-labeled milk scan  Barium swallow will only r/o anatomic cause
  • 59. Management of GERD  Medical  Non pharmacological  Semi upright position ½ - 1hr after feeds in 30-45° angle prone - not car seat  Thicken feed - Rice cereal  Small frequent feeds  Minimize stimulation during and after feeds  Decrease air swallowing  Pharmacological  Reglan  H2 receptor antagonists: Cimetidine and ranitidine  Antacids: Maalox and Mylanta  Surgical  Nissen Fundoplication  Indication: Aspiration or esophagitis Associated pathology eg. CP, MR  Complication: 10-30% Bloating Loosening of wrap Esophageal dysmotility Perforation
  • 60. “Red Flags” indicate need for further workup  Wt <5th centile on CDC chart  Wt loss or no wt gain from one month to next  Significant decline in percentiles (>2)  Deviation from normal weight gain  < 20g/d up to 3 mo  <15g/d 3-6mo  Wt for length < 5th or > 95th  Deviation from normal HC growth  0.5 cm/wk up to 3 mo  0.25 cm/wk 3-6mo  Disproportionate head growth
  • 61. Introduction of Solids  Factors associated with weaning (Fewtrell et al., 2003)  Formula fed infants tend to receive solids earlier  PT infants more likely to receive solids at both 6 and 12 wks post term compared w/ AGA FT  Formula feeding and maternal smoking associated w/ earlier introduction solids  Introduction solids between 4-6 months CA + readiness skills  Postural control (head, trunk), able to eat from spoon  Introduction > 4 solids before 17 wk CA increased risk for eczema/atopy in PT (OR 3.49) (Morgan et al., 2003 [controversial; case series])  If one/both parents atopic, onset in infant by 10 wks CA (OR 2.94)
  • 62. Growth in Later Childhood-Adolescence  Doyle et al.: Mean wt. 1 SD below mean at 2 yrs, 5 yrs, 8 yrs; catch up by 14 yrs Girls aver. 7.3 kg less; boys weigh 8.3 kg less Height: 4.5 cm (girls) -5.8 cm (boys) less at 14 yrs  Saigal et al. (2001): at 12-16 yrs 11% girls < 3%  8% boys < 3% (NBW FT 1%)  Hack et al. (2003): VLBW females catch-up by 20 yrs v. VLBW males remain shorter and lighter
  • 64. Immunizations  AAP recommends regular doses of immunizations be given at the infant’s chronological age regardless of weight or prematurity.  DTaP, Hib, IPV, MMR, Varicella, Prevnar  Hepatitis  Rotavirus  Influenza  Palivizumab
  • 65. Hepatitis B  HBsAg neg mother:  Preterm < 2kg : delay immunization until prior to discharge. If <2 kg at discharge delay until 2 months. 4 doses  HBsAg pos mother:  HBIG + Hep B vaccine at birth  Post-vaccination testing  If <2kg should not count initially vaccine in 3 dose schedule  HBsAg unknown:  Give 1st dose Hep B vaccine at birthHBIG with first 12h
  • 66. Influenza  After 6 mo age  High risk of respiratory illness e.g. BPD, mechanical vent, heart disease  2 doses:  0.25ml IM  One month apart  Between October and mid-Nov  Household contacts should be given vaccine
  • 67. RSV Prevention  Significant morbidity and re-hospitalization for preemies with BPD, on ventilator  Palivizumab (Synagis):  IgG monoclonal antibody  55% reduction in RSV hospitalization in preemies  Indication:  Preemies <32 wks GA (<28wk GA for 1 yr, 29-32 wk GA for 6mo)  BPD within 1st 2 yrs of life who require diuretics, bronchodilators, home oxygen, ventilation  Asymptomatic, acyanotic congenital heart disease  32-35 wk GA with risk factors eg. neurologic, resp disease, young siblings, attendance of day care, smoke exposure  Given monthly IM  October- April in this region  RSV IVIG (Respigam) : given IV , provides higher titer but given in large volume, used in immunodeficient patients or severe CLD likely to develop serious sequelae from any viral resp illness.
  • 68. May consider post-op booster dose
  • 70. ROP Screening  Who gets screened?  Bwt , 1500g or GA , <30 wks  Select infants 1500-2000g w/ unstable course  ROP typically begins to regress by 41-43 weeks PMA  Frequency exams  Weekly: ROP that may soon progress to threshold ROP  ROP less than threshold zone I  ROP in zone II  Q 2wks  Less severe ROP in zone II  Q2-3 wks  Incomplete retinal vascularization, but no ROP
  • 71. 10 Year Follow-up CRYO-ROP Study  Treated eyes  Better distance and near visual acuity  Better anatomic status of fundus- normal appearing  Less blindness  Late retinal detachment ~ 14yrs of age more common in untreated eye  ETROP Trial (2003, 2004)  Early Rx  ↓ Risk poor vision  ↓ Structural damage eye  Effect ablative therapy for threshold ROP  Preserves peripheral vision  Reduction ~5-7% in visual field area in treated eyes  27-35% deficit in visual field area in untreated eyes with severe ROP  Contrast sensitivity  33% reduction in unfavorable CS results with cryosurgery
  • 72. Visual Sequelae of Preterm Birth: Assess EOM, corneal light reflex, ability to fix; Ophthalmologist evaluation by 1 year of age  Poor vision detected in ~2.5% VLBW children  Visual function  Reduced visual acuity, color vision, contrast sensitivity  Field defects, eye motility disorders  Reduced visual acuity  47% all VLBW children  34% VLBW children without ROP or neurological complications  Strabismus  6-fold increase by 10-12 yrs of age  Overall incidence 13.5 % at 3.5y for VLBW v. 2% born at term  5.9% VLBW children without ROP/neurological complications  Esotropia dominating type  Secondary functional amblyopia associated in many
  • 73. Hearing Loss in High Risk Infants  Prevalence permanent HL among NICU infants 1-3%  10-20 X general population (v. 0.1- 0.3% all LB)  Auditory neuropathy/auditory dyssynchrony common (Berg et al., Peds 2006)  Abnormal ABR, normal OAE  Normal outer hair cell function  Abnormal neural function  No acoustic reflexes  Poor speech perception  Fluctuating HL  If maturational, normalizes bet 12- 18 months  Known risk factors  Damage to inner hair cells  LBW  Low Apgar score, asphyxia  ECMO (25% affected; 50% have progressive loss)  Ototoxic medications  GJB2-connexin 26 mutations  IVH  Hyperbilirubinemia  Acoustic (noise) trauma  Ventilation  Congenital infection -CMV  Sepsis, meningitis  Anatomical malformations  Family history
  • 75. Science at the heart of medicine
  • 76. Science at the heart of medicine
  • 78. Respiratory Health: Chronic Lung Disease  Incidence 15-50% (varies by GA, NICU)  Oxygen Dependence at 36 wks PMA  Best predictor LT pulmonary outcome 57-70% at 23 wks Gestation 33-89% at 24 wks 39-61% at 500-800g BWT  O2 dependence at 1 year of age GA (w) % Requiring <23 24 24 13 25 7
  • 79. Chronic Lung Disease: Associated Pulmonary Problems  Early motor development and feeding  Motor development  Low muscle tone  Decreased tummy time when on O2  Poor prone skills  Feeding  Increased caloric requirements  Tachypnea/fatigue w/ feeding  GER  Stridor  Tracheomalacia Airway collapse  Laryngomalacia Hypotonia  Upper airway obstruction/abnormality Subglottic stenosis Vocal cord paralysis/dysfunction  Persistent central apnea
  • 80. CLD: Home Oxygen Therapy  Reduces  Mortality from SIDS  Desaturations, pulmonary hypertension, reversible obstructive lung disease  Risk nosocomial infection  Improves growth, neurodevelopment  Need based on monitoring during all ADL  During sleep, wakefulness and feeding/activity  Infants w/ SaO2 < 90% (<93% during sleep) need LT O2 therapy  Keep SaO2 between 92- 94%  95-98% if pulmonary hypertension  Avoid SaO2 < 90% more than 5% time  Wean based on 2 hour challenge  Able to keep SaO2 > 92%  O2 flow < 0.02 l/kg/min  Wean daytime O2 first
  • 81. Sample O2 weaning protocol Science at the heart of medicine Alternate daytime and nighttime weaning ½ L/min → ¼ L/min → 1 /8 L/min → 1 /16 L/min → room air (21% O2) Infant meets weaning criteria: 1.Maintain SpO2 > 95% during sleep, while awake and when feeding 2.Good weight gain 3.No increase in respiratory symptoms
  • 82. Bronchopulmonary Dysplasia/CLD: Care at Home  Oxygen  No smoking  Diuretics  Bronchodilators  Airway issues  Nutrition  Feeding tolerance  Higher feedings  Fluid restriction  GERD  Cardiorespiratory monitors  ALTE, SIDS  Home oxygen (long term O2 therapy)  Infection  RSV prophylaxis  Pneumonia  Otitis media
  • 83. Post-Discharge Management CLD  Monthly or bi-monthly visits with pulmonary  Adjust for weight gain for at least 1-2 months post D/C  Check chemistries q 2-4 wks  Wean/let outgrow meds when off O2  Wean daytime O2 before nighttime O2  Remember palivizumab therapy!  Need at least 24 cal/oz formula (120-140 kcal/kg/d)  Medications  Hydrochlorthiazide 20-40 mg/kg/d ÷ q 12h  Spironolactone 2-4 mg/kg/d ÷ q 12h  Furosemide 2-4 mg/kg/dose q 12- 24h  KCL 1-4 mEq/kg/d ÷ q 6-12h
  • 84. Medications Used in the Management of CLD  Bronchodilators  Albuterol (Proventil, Ventolin) 0.5 cc by nebulizer or inhaler q 6-12h  Ipratropium (Atrovent) 0.5 cc by nebulizer or inhaler q 12h  Levalbuterol (Xopenex) 0.62 mg respule by nebulizer  Anti-inflammatory drugs  Cromolyn (Intal)  Inhaler or nebulizer  Takes 2-4 weeks for adequate trial  Inhaled steroids  Budesonide (Pulmicort)  0.25-0.5 mg respule q 12- 24h  Fluticasone (Flovent)  0.125 mg (1 puff) q 12 h  Betamethasone  Oral prednisone for serious exacerbations
  • 85. Respiratory Health  50-80% develop RAD  10-15% mortality rate post surfactant – sudden death common  Lung function improves between 8 and 14y  At 14 yrs:  Clinical respiratory health comparable to NBW children  Rate asthma not significantly different  Overall lung function essentially normal  Lower for all air flow variables, but no difference in lung volume or air trapping  No differences between ELBW children with/without BPD  ELBW teens had lower aerobic capacity, strength, endurance, flexibility and activity level  Less previous and current physical activity, sports participation, poorer coordination (Rogers et al., 2006)
  • 86. Home Monitoring Indications  Persistent apnea  On caffeine Maintain on caffeine until 44 w PMA Continue monitoring for 2-4 weeks after discontinuing caffeine  Persistent bradycardias with feedings  Severe GERD  Infants requiring side or prone positioning  Have O2 on standby at home
  • 87. SIDS Risk for Preterm Infants  Risk  FT: 1.0/1000  PT  2-2.5 kg 3.8/1000  1.5-2kg 6.4/1000  < 1.5 kg 7.5/1000  Full term infants  SIDS risk greatest at 52.3 weeks PMA  Preterm  SIDS risk highest at 50 + 2 w PMA  24-28 weeks GA  45.8 weeks PMA  Apnea appears to resolve in most PT infants before age of SIDS deaths  Apnea > 30 sec resolves by 43 wks  Monitoring warranted if significant apnea persists at time of d/c  Monitor not needed for apnea if > 8 days apnea- free in hospital
  • 88. SIDS Prevention – PT Infant Sleep Position  Preterm infant sleep position  Less frequent use of non-prone (back or side sleeping) by parents 64% supine at hospital D/C → 35 % at 2mos CA (Adams et al, 1998) GER was common reason cited for change to prone  Risk SIDS greatest for infants in unstable side position or within first 2 weeks of sleep position change for premature infants (De-Kun et al, 2003)  Recommendation for healthy PT: supine, safe sleep practices, smoke free, don’t overheat  Alternative sleep position- sidelying, arm extended no longer recommended (OR 3.9 x ↑ risk SIDS)
  • 89. Oral Health  Higher prevalence of enamel defects: 40-70%  Enamel hypoplasia 96% v. 45%  Primary teeth 78% v. 20%  Secondary teeth 83% v. 36%  Osteopenia  Not prevented by mineral supplementation or vitamin D  First tooth eruption later in PT girls than PT boys  60% > 10 mos. age (< 1kg, < 31 wks)  Permanent dentition  Incisors, molars  Palatal grooves  High arched palate  Speech, bite
  • 90. Other Health Issues  Scars and deformations  Nares  Notches, septal damage/deviations  Skin sloughs, scars, contractures  Capillary hemangiomas increase during first year then fade  Hernias  Inguinal, umbilical  Increased incidence cryptorchidism and undescended testis, refer to urologist after 6mo  Anemia  Metabolic bone disease (osteopenia)  Inadequate dietary phosphorus  Diuretics  RDA Vitamin D 400 IU/d  Malabsorption/ rapid transit time  Short bowel syndrome  Cholestasis  Elemental formula containing MCT oil  Supplemental fat-soluble vitamins (A, D, E, K)  Ursodeoxycholic acid
  • 91. Other Health Issues  Orthopedic:  Internal or ext rotation of LE corrects when baby walks  Ankle clonus, toe standing, truncal hypotonia, shoulder girdle hypertonia usually resolve by 18 mo  Hand preference before 18 mo may indicate hemiparesis  Positional plagiocephaly  Position head on rounded side  Torticollis Neck exercises w/ diaper changes, 3 repetitions, 10 count each  Cranial orthotic – bands, helmet if severe deformation or no improvement
  • 92. Neurobehavior and Neurodevelopment Science at the heart of medicine
  • 93. Behavior and Pain Perception: Acute Consequences  Stress responses  Hormonal, behavioral, and autonomic  Changes in HR, RR, BP, blood vessel tone  Changes in CBF, brain blood volume and oxygen delivery  ↑ risk IVH and PVL  Short-term sequelae of prior noxious stimuli  Lower threshold to tactile stimulation  Hypersensitive to pain  Chronic pain responses to local injury  Link with cumulative painful procedures and subsequent pain and stress behaviors  ↓ behavioral response to additional acute painful events at 32 wks’ corrected age
  • 94. Longer-term Sequelae of Prior Noxious Stimuli  Lack of normal pain sensitivity as toddler among ELBW children, esp. < 800g (1lb 12 oz)  ↓ pain sensitivity at 18 months corrected age  Child temperament and reported pain sensitivity appear independent  Muted pain response to the normal pain consequences of acute injury  Gross motor coordination and motor planning less well developed  At 4.5 yrs exhibit greater somatization by parent report  At 8-10 yrs, overall NBW and ELBW children had similar perceptions of pain intensity  ELBW rated medical pain > psycho-social pain  Higher pain intensity to recreational pain Buskila et al., Arch Pediatr Adolesc Med 2003; 157: 1079-1082
  • 95. Neurological Outcomes  Early developmental problems related to brain immaturity • Autonomic instability • Abnormal state regulation and behavioral organization • Motor problems – lack of graded flexion  Late – abnormal brain maturation • Extreme immaturity or brain injury • Risk for longterm cognitive, speech, motor, vision, behavior and attention problems
  • 96. Functional Outcomes  Functional limitation  Restriction of ability to perform an essential activity  Self-care  Mobility and locomotion  Communication  Socialization  Compensatory dependence  Need for services above routine  Percentage children with a health problem affecting > 1 activity of daily living  1001-1500g 34%  < 1000g 46%  School age outcomes Standard Placement 50% Resource 30% Special Education 20% Repeat a grade 16%
  • 97. Minor Neurodevelopmental Difficulties  Cognitive  Mean IQ 8-10 points lower than FT  Borderline intelligence – IQ 70-84 750-1500g 20% <750g 33%  Learning deficits  45% - 65% v. 11% FT  Reading, spelling, math skills  Memory tasks and processing speed
  • 98. CNS Complications in Preterm Infants  Intraventricular Hemorrhage  Incidence ↑ with small GA  Screening Head Ultrasound or CT/MRI  Complications : hemorrhagic cerebral infarct, porencephalic cyst, hydrocephalus, ventriculomegaly, PVL  Assess muscle tone – usually high tone in preemies up to 12-18 months.  Serial US, CT/MRI  Early intervention  Hydrocephalus  Assess Head circumference and signs of ↑ ICP once/month if pt has Hx of IVH  DD: catch up growth – Hydrocephalus HC >1.25cm/wk, signs of ICP, changing neurological status  Serial US if S+S of ↑ ICP or ↑ HC
  • 99. CNS Complications in Preterm Infants  Periventricular leukomalacia:  Ischemic infarction of white matter adjacent to lateral ventricle  Occurs in 25% infants <1500g  Diagnosed by US or MRI as white matter cysts as early as 1st wk if insult occurs in utero  Usually 2-8wks after insult  Closely associated with CP, developmental delay, epilepsy, visual impairment  Assess development and visual assessment within first 6mo, Early intervention  Microcephaly  HC < 3rd centile, if HC less than wt/length centiles, >2 standard deviations below mean  Primary or acquired  Major risk factor for Mental retardation
  • 100. Preterm Birth Affects All areas of the Brain at 8 Years  Whole brain  Cerebral gray  Subcortical gray  Cerebral white  Most vulnerable areas of PT brain  Sensorimotor cortex  Premotor cortex  Mid-temporal cortex  Cerebral volumes related to  FS IQ, verbal IQ, performance IQ, Peabody picture vocabulary test GA, VM, PVL, chorioamnionitis significantly related to brain volume NEJM
  • 101. What about preterm infants with milder or no evidence of injury?  Lower grades IVH I-II poorer ND outcome at 20 mos CA than infants with no IVH  Higher rates MDI << 70 (45%, OR 2), major neuro abnormality (13%, OR 2.6), ND impairment (47%, OR 1.83) [Patra et al., 2006]  Among low risk preterm infants 28-33 weeks GA with normal cranial US, MRI reveals:  At 42 weeks’ postmenstrual age, gray matter volumes were not different between preterm and term infants  Myelinated white matter was decreased, as were unmyelinated white matter volumes in the region including the central gyri (Mewes et al., Pediatrics 2006)
  • 102. Factors Associated with Neurodevelopmental Morbidity in Infants with Normal Cranial Ultrasounds Science at the heart of medicine
  • 103. Developmental Disabilities  Developmental screening : Medical history, parent interview, standard tools, clinical observation  Document progress  Detect delays  Refer for Early intervention  Always use adjusted age up to 2.5 yrs  Learning difficulty  At school age  IEP  Behavioral problems:  1st year: Irritability, irregularity in behavior, sleep disorders  Toddlers : willfulness, hyperactivity, fearfulness  School age: ADHD, aggressive behavior, withdrawal, limited social skills  Autism spectrum disorders
  • 104. Neuromuscular Assessment  Motor milestones  Evaluate quality of movement (variety, fluidity, range, asymmetry, initiation, grading, endurance and strength)  Sequential assessment  Tone/posture  Hypertonia> hypotonia > dystonia  Signs of hypertonicity, hypotonia dystonia  Developmental and postural reflexes  Reflexes should disappear by 4-6 mo of age to allow normal development – otherwise suspect CP  Balance and protective reactions  Reactions should appear by 4-9 mo of age when infants balance is threatened  Behavior  Sensory integration issues  Social skills/Play
  • 105. General Developmental Screening Tools  Battelle Developmental Inventory Screening Tool (BDI- ST)  Child Development Inventory (CDI)  Bayley Infant Neurodevelopment Screen (BINS)  Denver II  Cognitive Adaptive Test/Clinical Linguistic Auditory Milestones Scales (CAT/CLAMS)  Early Language Milestone Scale  Ages and Stages Questionnaires and ASQ-SE  Parent’s Evaluation of Developmental Status (PEDS)  M-CHAT (autism/ASD screen)
  • 106. Frequent Neurodevelopment Abnormalities  Autonomic instability/behavioral disorganization  Jittery  Mottles easily  Difficulty transitioning between states  Poor self-calming  Stress signs  Apnea/bradycardia  Increased risk ASD  Sensory motor integration problems  Abnormal muscle tone  Hypertonia/hypotonia  Lack of graded flexion (imbalance between flexion-extension)  Delayed milestones – poor movement quality  Delayed cognition  Delayed speech development
  • 107. Sensory Motor Integration  Secondary to abnormal early stimulation  Light, noise, touch, pain, oral  Clinical symptoms in infants-toddlers Feeding problems/aversion Difficulty transitioning to solids (textures/tastes) Excessive mouthing objects (sensory seeking behaviors) Sensitivity to different stimuli (feet) Grass, sand, carpet Toe-walking without socks Hyperactivity Delayed language development
  • 108. Common Motor Abnormalities  Low central (truncal) tone  Poor head control  Poor prone skills  Shoulder retraction  Wide base of support in sitting Movement forward/backward only No reach to side or rotation  Imbalance flexion/extension  Arching, pushing into standing when held or positioned into sitting  Poor transitional skills Rolling, sitting, standing Static sitter Tight muscle groups  Frog legged  Torticollis
  • 110. Family Support  Ideally parents involved prior to discharge in care of baby  At visit:  Schedule longer visit  Be aware of parents concerns  Give careful explanation and clarification  Be aware of families financial resources and support system  Special attention to single parents  Assess for signs maternal postpartum depression
  • 111. Impact of Preterm or Sick Infant Birth  Parental stress and distress  Parental perception of infant vulnerability  Technology dependence at home  Parenting - bonding, infant attachment  Perceived parenting competence  Difficult to find appropriate child care  Lack of respite  Costs of care  Multiple provider visits  Medical bills  Lost work  Impact on family functioning  Divorce, single parenting  Sibling issues  Child neglect/maltreatment  Vulnerable child syndrome  Family and friends don’t understand Taylor et al., Arch Pediatr Adolesc Med 2001; 155: 155-161
  • 112. Effect of Neglect on Outcome at < 1000 gm Birth WeightCognitivezscore(SDI)Cognitivezscore(SDI) 0.00.0 -0.5-0.5 -1.0-1.0 -1.5-1.5 -2.0-2.0 -2.5-2.5 1 year1 year 2 years2 years 4 years4 years 0.50.5 No referral for neglectNo referral for neglect Any referral forAny referral for neglectneglect Substantiated referralSubstantiated referral for neglectfor neglect Strathearn 2001Strathearn 2001
  • 113. What do “long-term outcomes” mean to the families?  What we expect for child and family v. what family expects for the child and themselves  Impact of high risk birth, sick infant, and/or multiple gestation on family dynamic and family functioning  Strategies  Listening to and empowering parents  Reassurance  Respite  Effects on parents and their perception of themselves as parents  Trajectory of motherhood and “motherhood interrupted”  Supporting parents of a chronically ill or disabled child  Adaptation to the crisis  Normalization  Chronic sorrow  Fluctuation between states
  • 114. Information and Resources Needed by Families  Support for their role as parents  Understanding preemie development  Physiologic, motor, states of consciousness, attention, self-regulation  Avoiding hypervigilance - vulnerable child  Negotiating transitions and school challenges  Social support network  Family, friends, co- workers  Community resources  Parent support programs/networks  Health insurance, programs for children w/ special health care needs  Respite Care
  • 115. Adolescent and Adult Issues of Premature Infant
  • 116. Adolescence to Young Adulthood  Most motor difficulties, if persistent are less problematic as child adapts  Increasing complexity of tasks  LD persist in 30-40% Math most challenging  Nearly 50% ELBW children require PT or FT special educational assistance  Grade repetition in 20-30%  Attentional problems less taxing as children grow older  Delinquency and risk-seeking behaviors less common among PT compared w/ FT children
  • 117. Transition to Adulthood Science at the heart of medicine
  • 118. Transition to Adulthood  Intellectual and academic achievement  Mean IQ 81-98  IQ < 85 19-47%  Completed HS/GED 56-85%  Post high school (secondary) 37-38%  Work status  Fully employed 48%  Unemployed 14-26%  Chronic illness 47%  Neurosensory impairment 12-28%  Vision 37%  Retinal detachment 4-7% Science at the heart of medicine
  • 119. Behavioral Outcomes and Evidence Psychopathology at 20 Years of Age  VLBW men  Fewer delinquent behaviors  No differences in  Internalizing  Externalizing  Total problem behaviors  Parents report  More thought problems  More attention difficulties but not more ADHD  VLBW women  More withdrawn behaviors  Fewer delinquent behaviors  Internalizing behaviors (anxious/depressed, withdrawn) borderline clinical cut-off (30% v. 16%, OR 2.2)  Parents report more anxious/depressed (OR 4.4), withdrawn (OR 3.7) and attention problems (OR 2.4) Hack et al., Pediatrics 2004; 114: 932-940
  • 120. References  Bernbaum J. Preterm infants in Primary Care: A guide to office management.  Ritchie S. Primary care of the premature infant discharged from the neonatal intensive care unit. MCN Am J Matern Child Nurs. 2002 Mar-Apr;27(2):76-85  Sherry B, Mei Z, Grummer-Strawn L, Dietz WH. Evaluation of and recommendations for growth references for very low birth weight (< 1500 grams) infants in the United States. Pediatrics 2003 Apr;111(4 Pt 1):750-8.  Brodsky D, Ouellette MA. Primary Care of the Premature Infant. Saunders Elsevier Publisher, Philadelphia, 2008.  Campbell DE, Imaizumi SO, Bernbaum JC. Health and Developmental Outcomes for Infants Requiring Intensive Care, in McInerny TK, Adam HM, Campbell DE, Kamat DM, Kelleher KJ, eds. American Academy of Pediatrics Textbook of Pediatric Care, Elk Grove Village, IL: American Academy of Pediatrics, 2009, pp 852-867  Bernbaum JC, Campbell DE, Imaizumi SO. Follow up Care for the Graduate From the Neonatal Intensive Care Unit, in McInerny TK, Adam HM, Campbell DE, Kamat DM, Kelleher KJ, eds. American Academy of Pediatrics Textbook of Pediatric Care, Elk Grove Village, IL: American Academy of Pediatrics, 2009, pp 867-882
  • 121. Science at the heart of medicine Care of the Moderate and Late Preterm Infant
  • 122. What about the larger low birth weight infant?  LBW (1500-2499g) associated with 1.38 greater risk of special health care needs (SHCN)*  Significantly greater Use/need for medication High usage HC services Any chronic condition LD Emotional/behavioral problem  Higher rates of rehospitalization among infants 33-36 weeks’ GA (Escobar et al. Pediatrics 1999) Most for non-life threatening illnesses *Stein RK, Siegel MJ, Bauman LJ. Pediatrics 2006; data derived from 2002 National Health Interview Survey
  • 123. Moderately Preterm Infants: 30-34 weeks (Escobar et al., Arch Dis Child 2006, Seminars in Perinatology 2006)  Accounts for 3.9% LB in US and 32% all premature infants  Experience substantial morbidity  45.7% req. assisted ventilation  3.2% req supplemental O2 at 36 wks PMA  11.2% req hospital readmission within 3 mos. Higher in males and with CLD
  • 124. Late preterm infants: 34-36 6 /7 weeks’ gestation  Study groups full term and near term infants with comparable Apgar scores  Larger preterm infants had more:  Temperature instability  Hypoglycemia  Respiratory distress + need for O2/ asst. ventilation  Jaundice  Frequent sepsis evaluations  More IV fluids Wang et al. Pediatrics 2004: 114:372-376; Escobar et al., Seminars in Perinatology 2006
  • 125. Higher rates of c-sections and inductions among singleton live births: US 1992 - 2002 March of Dimes Perinatal Data Center, 2005 C-sections Inductions 34-36.6 weeks in 2002: C/S: ~ 28% Induction: ~ 18%
  • 126. What is the impact to infant health from rising late PTB? Need to separate causes and effects  Increased morbidities - Higher Neonatal and Infant mortality:  U.S. neonatal deaths/1000 live births (2002) 34-36 weeks = 4.1 37-41 weeks =0.9  U.S. infant deaths/1000 live births (2002) 34-36 weeks = 7.7 37-41 weeks = 2.5
  • 127. What morbidities associated with Late PTB?  Increased immediate morbidities:  Respiratory distress  Jaundice  Feeding difficulties  Hypoglycemia  Temperature instability  Sepsis  Increased NICU use (and re-admissions)  Increased cost  Long term outcome – emerging DATA!
  • 128. Frequency of RDS, sepsis and apnea: 34 to 36 weeks of gestation Arnon, et al. Paediatr Perinat Epidemiol, 2001
  • 129. Clinical Outcomes: Full term v. Late Preterm Wang, et al. Pediatrics, 2004
  • 130. Late Preterm Births: Excess Hospital Costs Gilbert, et al. Obstetrics Gynecology, 2003
  • 131. Multivariant Model for Rehospitalizations Adapted from: Escobar, et al. Arch Dis Child, 2005 (Kaiser)
  • 132. 75-7875-78 79-8279-82 83-8683-86 87-8987-89 91-9491-94 32-36 Weeks Gestation32-36 Weeks Gestation Prenatal Unclassifiable Hagberg, Acta Paedtr 2000 Birth yearsBirth years Per1000livebirthsPer1000livebirths 1212 1010 88 66 44 22 00 Prevalence of Cerebral Palsy Over TimePrevalence of Cerebral Palsy Over Time Peri/neonatal
  • 133. Educational Outcomes for Children Born @ 32-35 weeks’ Gestation  At age 7 yrs (GA 34.3 w)  25% non-teaching assistant (resource room)  4% special education, 3% special school or class  Problems with 32-35w 32w 35w Writing 32% 50% 33% Fine motor 31% 50% 33% Math 29% 42% 31% Speaking/listening 19% 33% 18% Reading 21% 25% 22% Physical education 12% 33% 9%
  • 134. Behavioral Outcomes for Children Born @ 32-35 Weeks Gestation  Huddy et al (UK)-age 7 (mean GA 34.3w)  19% abnormal hyperactivity score v. population norm 10%  IHDP at age 8*  8-12% with serious behavioral problems on CBC v. expected 2% for general population
  • 135. Primary Care of the HR Infant: An Analogy  Eric Larson and Robert Reid: (JAMA 2010; 303:1644-1645)  “Group Health’s early medical home experience suggests that patient-centered medical homes can be an effective model of primary care, but only if health organizations and systems invest resources, rethink reimbursement and redesign teams to address the comprehensive and increasingly complex needs of an aging population.”

Editor's Notes

  1. ·
  2. N = 600; Birth Wt: 501-1000 g. Growth as a variable in the logistic regression model included: Gender, Race, GA, SGA, Maternal education, Severe IVH, PVL, Days to Return to Birth Weight, NEC, Late onset sepsis, BPD, Postnatal steroids and study center.
  3. N = 600; Birth Wt: 501-1000 g. Growth as a variable in the logistic regression model included: Gender, Race, GA, SGA, Maternal education, Severe IVH, PVL, Days to Return to Birth Weight, NEC, Late onset sepsis, BPD, Postnatal steroids and study center.