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.

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

OVERVIEW

1. Impact on Babies Sensory and Developmental Implications

Individualized developmentally supportive care

2. Impact on FamiliesEmotional impact

Impact on relationships Possible long-term implications

3. Implications for DB ProjectsIncreased level of awareness and sensitivity

Role of EI collaboration

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--it’s altered This has implications for learning and for

later life

IMPACT on BABIESA look at development of sensory systems

TactileVestibularGustatoryOlfactoryAuditoryVisual

A look at environments

Intensive Care Nursery vs. Womb

A look at environments: Intensive Care Nursery vs. Womb

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

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

VESTIBULAR SYSTEM

System is functional by Week 21Clinical Observations and Implications Motion and position changes can be very

overstimulating Impacts infant’s 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

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

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

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

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

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 changesRespiratory changesColor changes Desaturation Inability to sleep Increased motor activity

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 infant’s tolerance for stimuli and use information to plan appropriate intervention

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

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

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

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

Effects of the NICU Environment on Sensory and Neurological Development

The infant’s developing sensory andneurological systems are extremely

vulnerable to the environment inwhich 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

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

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

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

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 don’t do can have a lasting effect

on the infant and family.

Linda M. Lutes, M.Ed., Infant Development Specialist

What can be done to promote better outcomes?

We can provide

Individualized

Developmentally

Supportive

Care

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

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 infant’s environment

Includes type, configuration of bedding/clothing Appropriateness of pacifier Appropriateness based on current gestational age

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

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 baby’s care Kangaroo holding Resources and referral to early intervention

programs/support groups/social service agencies

Can anyone be prepared for such an event?

NO!

Can anyone survive such an experience?

MAYBE!

What kind of an

IMPACT does this have

on

families?

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)

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 couple’s relationship; can also strain relationships with other family members when asked to continue providing support

IMPACT on FAMILIES

It’s 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

So . . . what’s a Deaf-Blind Project person supposed to do?

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

And last but not least…

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