The NICU Experience: Its Impact and Implications

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The NICU Experience Its Impact and
Implications

• Barbara Purvis
• NTAC Webinar
• June 16th, 2004

This project is supported by the U.S. Department
of Education, Office of Special Education
Programs  (OSEP). Opinions expressed herein are
those of the authors and do not necessarily
represent the position of the U.S. Department of
Education.
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OBJECTIVES

• Increase awareness of NICU experience
  and its impact on premature and medically fragile
  infants
• Introduction to the practice of individualized
  developmentally supportive care
• Increase awareness of NICU experience and its
  impact on family members of premature and
  medically fragile infants
• Increase awareness of implications of NICU
  experience when providing TA

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OVERVIEW

• 1. Impact on Babies
• Sensory and Developmental Implications
• Individualized developmentally supportive care
• 2. Impact on Families
• Emotional impact
• Impact on relationships
• Possible long-term implications
• 3. Implications for DB Projects
• Increased level of awareness and sensitivity
• Role of EI collaboration

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IMPACT on BABIES

• Age at which infant is considered viable
  has decreased in past 10-15 years
• Babies born at 24-26 weeks gestational age
  routinely survive
• As a result, preterm infants complete their
  development in a very unnatural environment
• Development is not just delayed--its altered
• This has implications for learning and for
  later life

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IMPACT on BABIES

• A look at development of sensory systems
• Tactile
• Vestibular
• Gustatory
• Olfactory
• Auditory
• Visual
• A look at environments
• Intensive Care Nursery vs. Womb

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TACTILE SYSTEM

• 7 weeks - Functioning sensory receptors in upper
  and lower lip
• 11 weeks - Sensory nerve endings in place and
  functioning
• 16 weeks - Fetus self-initiating tactile
  stimulation
• (observed during
  ultrasound)
• 26 weeks - Primitive tactile reflexes can be
  elicited
  (hands, feet, limbs) rooting is present

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TACTILE SYSTEM

• Clinical Observations and Implications
• At any viable gestational age, an infant
  perceives pressure, pain and temperature
• Perioral area is very sophisticated by 24 weeks
• Entire system is extremely sensitive and easily
  over-stimulated
• Routine care-giving needs to be modified to
  minimize these effects for preterm babies during
  their stay in Intensive Care Nurseries

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VESTIBULAR SYSTEM

• System is functional by Week 21
• Clinical Observations and Implications
• Motion and position changes can be very
  overstimulating
• Impacts infants state, ability to rest, ability
  to self-regulate
• Slow, carefully planned movements and routines
  help diminish negative effects
• Attention to positioning while at rest and
  containment during handling can make a positive
  difference

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GUSTATORY SYSTEM

• Clinical Observations
• Fetus sucks/swallows average of 1 liter amniotic
  fluid daily in utero (provides practice for
  feeding and self-regulation)
• Prenatal activities in utero prepare infants for
  acquisition of feeding and other developmental
  skills after birth (hand-to-mouth, oral
  exploration, midline play)
• Infants have a high level of discriminatory taste
  (7000 taste buds at birth vs. 2000 at age 60)
  easy to overstimulate this sensory system

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GUSTATORY SYSTEM

• Implications
• Preterm babies miss this practice or practice is
  confused because conditions outside the womb
  add new variables
  (e.g. adding coordination
  of breathing to suck/swallow fingers/hands taste
  different)
• Contributing factor in long-term feeding
  difficulties
• Need to think about all the things that are stuck
  into babies mouths during their time in
  the NICU (tubes, medicines, vitamins, formulas)
  and look for ways to minimize negative impacts
  make experiences more pleasurable

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OLFACTORY SYSTEM

• Nasal structure/components in place by
  Week 8
• Clinical Observations and Implications
• Sense of smell and taste are closely linked
• Approach/withdrawal reactions present to
  olfactory stimuli
• Babies have ability to differentiate maternal
  smells
• Over-stimulation of system can lead to
  disinterest in feeding
• Need to implement strategies to protect the
  system and provide appropriate olfactory
  stimuli

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AUDIT0RY SYSTEM

• Week 4
• First anatomical division of internal ear
• Week 24
• System structurally complete and functional
• Week 26
• Can obtain auditory brainstem evoked
  
• potentials

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AUDITORY SYSTEM

• Clinical Observations/Implications
• Preterm inability to habituate makes the auditory
  system very sensitive
• Observed behaviors in response to increased
  auditory levels in NICU include
• Heart rate changes
• Respiratory changes
• Color changes
• Desaturation
• Inability to sleep
• Increased motor activity

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AUDITORY SYSTEM

• Clinical Observations/Implications (continued)
• Decrease the general noise level around
  the infant
• Wait to introduce musical toys/tape recorders
  until after discharge (or greater than 39-40
  weeks gestational age)
• Observe infants tolerance for stimuli and use
  information to plan appropriate intervention
  

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VISUAL SYSTEM

• One of the earliest systems to begin development,
  but it takes the longest to complete.
• Day 22 - Eye formation begins
• 2nd month - Retinal differentiation
• Weeks 6-8 - Optic nerve
• 3rd month - Precursors of rods and cones
• 22 weeks - All retinal layers present
• 23 weeks - Immature rods and cones
• 24 weeks - Myelinization of optic nerve begins
• 25-26 weeks - All neurons of visual cortex
  present

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VISUAL SYSTEM

• 7th month - Eyes open
  This means that babies born
  earlier than 27-28 weeks gestation may still have
  their eyes sealed shut or the cornea is hazy.
  This is very hard for parents.
• 28-40 weeks - General rapid ocular growth
• 8th month - Iris sphincter develops
  This means that before this time there
  is no way for the infant to control the
  amount of light into the retinal field
• 9th month - Retinal vessels reach the periphery
• By 36 weeks - Awake visual alertness

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VISUAL SYSTEM

• Clinical Observations and Implications
• Behaviors observed in response to increased
  visual stimulation in NICU include squinting,
  shading face with hands, turning away
• Need to assess items in visual field to determine
  appropriateness and monitor all visual stimuli
• Good reasons to protect babies eyes
• Fetus exposed to less than 1 candle power of
  light in utero
• Delivery lights are about 1500 foot candles of
  power
• Most NICU procedures start at about 300 foot
  candles

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VISUAL SYSTEM

• Clinical Observations and Implications
• (continued)
• Strong connection between visual and tactile
  system
• Touch is imperative for vision give
  representation to vision
• The visual cortex is one of the last to be
  myelinated, so higher levels of perception occur
  later
• Long term developmental outcomes indicate visual
  perceptual deficits

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Effects of the NICU Environment on
Sensory and Neurological Development

• The infants developing sensory and
• neurological systems are extremely
• vulnerable to the environment in
• which the infant is supported and
• will have a major impact on the outcomes
• of the preterm infants cared for
• in this high-tech space.
• Linda M. Lutes, M.Ed., Infant Development
  Specialist

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Effects of the NICU Environment on Sensory
and Neurological Development

• Once a preterm baby is born, everything is
  focused on getting the baby ready to go home.
  However, attempts to accelerate development
  compromise the normal sequence and
  developmental time frame and can have a variety
  of consequences.
• Early introduction of stimuli alters the sequence
  and development of the sensory system
• Between 6-26 weeks gestation 100,000 cells
  migrate daily through the cortex to a specific
  location, then put out hundreds of dendrites

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Effects of the NICU Environment on
Sensory and Neurological Development

• Early introduction of stimuli and increases in
  number/type of stimuli result in formation of
  increased numbers of dendrites, bringing
  increased numbers of impulses to developing brain
  cells
• Increased light increases awake states but not
  alertness
• Continuous light may result in endocrine changes,
  variation in biological rhythms and sleep
  deprivation
• Sound levels in NICU have been documented to
  range from 50-90 dB, with peaks to 120 dB

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Effects of the NICU Environment on
Sensory and Neurological Development

• Challenges with sensory integration
• Challenges with attention
• Challenges with state regulation (difficulty
  establishing appropriate sleeping and eating
  patterns, unable to calm or console self,
  overreactions to environmental stimuli
• Challenges with sensory defensiveness

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Effects of the NICU Environment on
Sensory and Neurological Development

• The preterm infant is in various stages
• of development to which we place
• unrealistic demands. The infant is at
• the mercy of its care providers . . .
• How we provide care and what we do
• or dont do can have a lasting effect
• on the infant and family.
• Linda M. Lutes, M.Ed., Infant Development
  Specialist

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What can be done to
promote better outcomes?
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We can provide
Individualized Developmentally
Supportive Care
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PROVIDING INDIVIDUALIZED DEVELOPMENTALLY
SUPPORTIVE CARE

• Adds developmental perspective to medical
  approach
• Utilizes Infant Development Specialist in
  partnership with medical staff and families
• Role of Infant Development Specialist
• Developed within past 15-20 years
• Come from variety of related fields (nursing,
  social work, OT, PT, ST, education, social
  work, child/maternal health)
• Requires specialized training, moving toward
  certification

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PROVIDING INDIVIDUALIZED DEVELOPMENTALLY
SUPPORTIVE CARE

• Assessment and recommendations
• NIDCAP (Newborn Individualized Developmental Care
  and Assessment Program)
• By Infant Development Specialist and/or
  
  Developmental Care Team
• Overall environment
• Including light, sound, activity level
• Individual infants environment
• Includes type, configuration of bedding/clothing
• Appropriateness of pacifier
• Appropriateness based on current gestational age
  

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PROVIDING INDIVIDUALIZED DEVELOPMENTALLY
SUPPORTIVE CARE

• Positioning
• Encourage hands-to-mouth, midline alignment
• Arms and legs flexed and tucked to protect
  shoulders and hips
• Nests to provide security, boundaries to
  facilitate self-regulation/provide proprioceptive
  input
• Feeding
• Determine readiness
• Choose appropriate nipple
• Model appropriate strategies for staff, families
  

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PROVIDING INDIVIDUALIZED DEVELOPMENTALLY
SUPPORTIVE CARE

• Care giving strategies
• Education regarding infant cues
• Advanced planning to minimize handling,
  over-stimulation
• Education and support for families
• Principles of developmentally supportive care
• Reading infant stress signals
• Strategies for being involved in their babys
  care
• Kangaroo holding
• Resources and referral to early intervention
  programs/support groups/social service agencies

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Can anyone be prepared for such
an event?

NO!
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Can anyone survive such an
experience?

MAYBE!
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What kind of an IMPACT does this have on

families?
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IMPACT on FAMILIES

• If unexpected - families face
  a roller-coaster of emotions,
  feel out of
  control
• If expected - parent(s) probably already
  tired/stressed/worried may have feelings
  of guilt mother may have health problems
• If multiple births - one or more of the babies
  may die, one or more of the babies may face
  much more serious challenges than other(s)

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IMPACT on FAMILIES

• If teen or at-risk mom - the situation may be
  more than she can handle, abuse/neglect may
  occur baby may be placed in foster home
• NICU setting makes it difficult to bond with
  baby, many parents report feelings that baby
  belongs more to nurses than to them
• NICU experience places huge strains on a couples
  relationship can also strain relationships with
  other family members when asked to continue
  providing support

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IMPACT on FAMILIES

• Its difficult to provide for needs of other
  children in family, feel torn in many directions
• Prolonged hospital stay for baby often results in
  missed work and/or having to give up job this
  creates financial stress and can have long-term
  financial implications
• Effects of the experience often exist long after
  the baby comes home

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So . . .

• whats a Deaf-Blind Project person
• supposed to do?

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IMPLICATIONS for PROVIDING TA

• Look for creative ways to partner with Early
  Intervention Programs
• Be careful about how you use your words
• Be more consistent and proactive in finding out
  from records/reports/family members whether a
  student spent time in the NICU
• Realize that family behaviors that sometime seem
  like barriers to us may have deep-rooted
  origins/explanations
• Make connections within neonatal medical
  community if possible

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And last but not least

• Take this new
• perspective with
• you and never let it go!