The NICU Experience: Its Impact and Implications

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The NICU Experience Its Impact
and Implications

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

This project is supported by the U.S. Department
of Education, Office of Special
Education Programs  (OSEP). Opinions expressed
herein are those of the author 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
• Introduce participants 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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IMPACT on BABIES

• Age at which an infant is considered viable has
  decreased in past 10-15 years due to medical
  and technological advances
• Currently, 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 altered development 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
• 26 weeks
• Primitive tactile reflexes can be elicited
  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, which provides
  practice for feeding and self-regulation
• Prenatal activities in utero prepare infants for
  acquisition of feeding and other developmental
  skills after birth (e.g. hand-to-mouth, midline
  play oral exploration)
• Infants have a high level of discriminatory taste
  (7000 taste buds at birth vs. 2000 at
  age 60) very 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
  
• Atypical development of this sensory system can
  contribute to long-term feeding difficulties
• Need to think about items placed into babies
  mouths during their time in the NICU 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
• Respiratory changes
• Heart rate 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

• Complex system One of the earliest to begin
  development, but 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

• Attempts to accelerate development (to accelerate
  discharge) compromise the normal sequence and
  developmental time frame, which can have a
  variety of consequences.
• Early introduction of stimuli alters the sequence
  and development of the sensory system
• Early introduction of stimuli alters neurological
  development
• Between 6-26 weeks gestation 100,000 cells
  migrate daily through the cortex to a specific
  location, then put out hundreds of dendrites
• Increases in number/type of stimuli result in
  formation of increased numbers of dendrites,
  bringing increased numbers of impulses to
  developing brain cells

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Effects of the NICU Environment on
Sensory and Neurological Development

• 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
• Altered development often results in
  developmental challenges
• Challenges with sensory integration
• Challenges with attention
• Challenges with state regulation
• Challenges with sensory defensiveness

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Why provide developmentally supportive care?

• 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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Why provide developmentally supportive care?

• Promotes improved outcomes for babies
• Off ventilator sooner
• Successful nipple feeding sooner
• Earlier discharge from hospital
• Decrease in developmental delays
• Adds developmental perspective to medical
  approach
• Recognizes family members as important
  members of infants care team and works to
  create a partnership

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PROVIDING INDIVIDUALIZED DEVELOPMENTALLY
SUPPORTIVE CARE

• Role of Infant Development Specialist
• Position has emerged/developed in past 10-15
  years, not yet found in all intensive care
  nurseries,
• Requires specialized training, certification
  being considered
• Come from variety of fields (nursing, social
  work, OT, PT, ST, education, social work,
  child/maternal health)
• Provide individual assessments
• Provide recommendations for staff and families

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PROVIDING INDIVIDUALIZED DEVELOPMENTALLY
SUPPORTIVE CARE

• Based on principles of NIDCAP
  (Newborn Individualized Developmental Care
  and Assessment Program)
• Assess overall nursery environment
• Including light, sound, activity level
• Assess individual infants environment
• Including type and configuration of
  bedding/clothing
• Appropriateness of pacifier
• Appropriateness based on current gestational age
  

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PROVIDING INDIVIDUALIZED DEVELOPMENTALLY
SUPPORTIVE CARE

• Assess infant before, during and following a
  caregiving procedure
• Heart and respiration rates
• Oxygen saturation levels
• Color
• State
• Responses to handling, changes in environment
• Stress signals
• Self-calming behaviors
• Motor activity
• Provide recommendations to family and
  medical staff to enhance infant development

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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!

• My husband and I felt a strange combination of
  happiness and sadness during the first few days
  of our babys life. We were happy that our baby
  was alive and with us, yet sad and fearful for
  what was ahead.

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Can anyone survive such an experience?
MAYBE!
The only way we were able to get through the
long days was by asking lots of questions
and looking up every word the medical staff
said. Kangarooing was a huge plus for the
tactile-starved parent who had been thus far kept
out of the way due to a myriad of slithering
tubes and cords . . . It seemed that from about
the time we started holding the babies they began
growing faster and appeared to stabilize. The
doctors and nurses were great about answering
our questions over and over again.
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Finally, it seemed like there was light at the
end of the tunnel. I began to keep a daily
journal. . . I wanted to be as involved as
possible. . . my childs advocate. Even at
two weeks we had come to know the personality of
our children intimately. I had no idea that an
infant that small could have a personality. . .
wide-eyed fighter with a social vent . . .
sleepy, laid back boy . . . easily stressed
and needed to have as little stimulation as
possible. Our daughter has been hospitalized
approximately thirty times since that first
year. . . Over the last thirteen years, I have
seen many changes in medical technology and many
changes in our lives. Quotes taken from You
Are Not Alone 20 stories of hope, heroism,
heartache, and healing as told by the parents of
children treated in the NICU 1998, Childrens
Medical Ventures, Inc., South Weymouth, MA.
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What kind of an IMPACTdoes this have on

families?
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IMPACT on FAMILIES

• If unexpected - families face a roller-coaster
  of emotions, report feeling 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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What Families say . . . it was depressing
because all that we heard was the bad stuff
we should make a baby book and put in all
of our sonogram pictures so that we would have
some memories of our baby. Her first surgery
lasted four hours. She was only two hours old
when they began. I am not sure that I can
express the anger I felt when I awoke. The
birth of a child should be a joyous, blessed
event. . . I remember feeling confused,
angry, sad, frustrated and
scared. Quotes taken from You Are Not Alone
20 stories of hope, heroism, heartache, and
healing as told by the parents of children
treated in the NICU 1998, Childrens Medical
Ventures, Inc., South Weymouth, MA.
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What Families sayI have never
cried as much as I did during the first week of
my babys life. Just being in my hospital room
and hearing a woman in the other room talking to
her new baby sent me into uncontrollable sobs.
One of the hardest days of my life was the day I
was released from the hospital without my new
baby. . . I resented every pregnant woman I saw.
I felt very guilty. I kept asking what I had
done wrong. Was it because during my shower on
the 4th I had bent down and pick up the soap.
Had I gotten up too many times during bed
rest? Was God punishing me for other sins I
had committed during my life? Whatever it was,
it was my FAULT!Quotes taken from You Are
Not Alone 20 stories of hope, heroism,
heartache, and healing as told by the parents of
children treated in the NICU 1998, Childrens
Medical Ventures, Inc., South Weymouth, MA.

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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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What Families say On the good days, I was OK.
On the average day, I was bad. On the
bad days, I was catatonic. I had shut
everyone out of my life except for the babies.
. . . we found ourselves asking Do we insist
they continue to do everything possible to
keep our baby alive? At what cost to the
quality of his precious life? We began to doubt
if we would ever have the family we wanted
so very much. It took us three years to
overcome this fear before trying to have another
baby. When I was discharged from the hospital
I felt guilty, like I was betraying my baby by
leaving him behind. Quotes taken from You Are
Not Alone 20 stories of hope, heroism,
heartache, and healing as told by the parents of
children treated in the NICU 1998, Childrens
Medical Ventures, Inc., South Weymouth, MA.
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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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What Families say Deciding to have a tubal
ligation was a painful decision. We had no
guarantees that our baby would survive. If
our child did survive, would we be spending the
rest of our lives taking care of a severely
disabled child? If the answer was yes, then we
wouldnt have the emotional or financial
resources to take care of another child. Star
light, Star bright, first star I see tonight.
I wish I may I wish I might, have this
wish I wish tonight. I wish Mommies baby will
stay in her tummy tonight. Quotes taken from
You Are Not Alone 20 stories of hope, heroism,
heartache, and healing as told by the parents of
children treated in the NICU 1998, Childrens
Medical Ventures, Inc., South Weymouth, MA.
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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 consistent and proactive in finding out from
  records/reports/family members whether a student
  spent time in the NICU
• Realize that family behaviors that 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!

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