The NICU Experience:

Its Impact and Implications

Virginia EI Conference
Roanoke, VA
March 7, 2005
Presenter: Barbara Purvis

Funded in part by NTAC (National Technical Assistance Consortium for Children and
Young Adults who are Deaf-Blind). This project is supported by the U.S. Dept. 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.
 OBJECTIVES
1) Increase awareness of NICU experience
and its impact on premature and
medically fragile infants
2) Increase awareness of NICU experience
and its impact on family members of
premature and medically fragile infants
3) Introduction to the practice of
developmentally supportive care
IMPACT on BABIES
„ Survival rate of infants born younger than
28 weeks gestational age has increased
dramatically due to medical and technological
advances
„ As a result, preterm infants complete their
development in a very unnatural environment
„ Development is not just delayed--it’s altered
„ This altered development has implications for
learning and for later life
A look at development of sensory systems

Tactile
Vestibular
Gustatory
Olfactory
Auditory
Visual

A look at environments
Intensive Care Nursery vs. Womb
 HANDOUT:
Prenatal Sensory Development Chart
 TACTILE SYSTEM

„ Babies must rest to grow. Over-stimulation

of system causes stress; impedes rest,
infant expends excess energy
„ Providing boundaries helps keep baby
calm; facilitates flexion development
„ Baby self-initiates tactile stimulation by
thumb-sucking and bringing hands to face;
need to allow this to continue
 VESTIBULAR SYSTEM

„ 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
„ Need to assess appropriateness of
rocking
 GUSTATORY SYSTM

„ Atypical development of this sensory

system can contribute to long-term
feeding difficulties
„ Look for ways to minimize negative
impacts of items placed in babies’
mouths in NICU
„ Provide time to adjust to different tastes
 OLFACTORY SYSTEM
„ Babies have ability to differentiate
maternal smells
„ Over-stimulation of system can lead to
disinterest in feeding
„ Attention to types of olfactory stimuli
in infant’s environment can improve
developmental outcomes
„ Gradual preparation for and introduction
to oral feeding will improve success
 AUDITORY SYSTEM

„ Decrease the general noise level in

the NICU and around the infant
„ Limit conversation around the baby
and always speak softly to the baby
„ Observe infant’s tolerance for auditory
stimuli and use the information to plan
appropriate intervention (especially
readiness for musical toys)
VISUAL SYSTEM

„ Provide environment protected from light

› 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

„ Need to assess items in visual field to

determine appropriateness and eliminate
inappropriate stimuli
„ Monitor all visual stimuli
 HELP!
What does all this mean
for NICU babies?
 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

 Effects of the NICU Environment on
Sensory and Neurological Development
„ Within the protective environment of the
uterus, the fetus is a capable being for its
gestational age and can develop
appropriately without interference
„ Outside the protective environment of the
uterus, infants struggle to meet unrealistic
developmental demands
„ Early introduction of stimuli alters the
sequence and development of the sensory
system
 Effects of the NICU Environment on
Sensory and Neurological Development

„ Within the protective environment of

the uterus, the fetus is a capable being
for its gestational age and can develop
appropriately without interference

„ Outside the protective environment of

the uterus, infants struggle to meet
unrealistic developmental demands
 Effects of the NICU Environment on
Sensory and Neurological Development
„ Preterm babies miss out on prenatal
activities in utero that provide practice
for key developmental skills
„ Early introduction of stimuli and
increases in number/type of stimuli alter
sensory and neurological development
¾ Developing brain forms increased numbers
of dendrites, bringing increased numbers
of impulses to developing brain cells
¾ Babies become conditioned to these
unnatural stimuli
 Effects of the NICU Environment on
Sensory and Neurological Development

„ Attempts to accelerate “normal”

developmental sequence and time frame
can have a variety of consequences.
„ Altered development often results in :
¾ Challenges with state regulation (difficulty
establishing appropriate sleeping and eating
patterns, unable to calm or console self,
overreactions to environmental stimuli
¾ Challenges with attention
¾ Challenges with sensory integration
¾ Challenges with sensory defensiveness
 How can we promote
better developmental
outcomes for babies?
We can provide...

Developmentally
Supportive
Care
But first
let’s think
about . . .
 the IMPACT
on FAMILIES
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 baby’s life. We were happy that
our baby was alive and with us, yet sad and
fearful for what was ahead.”
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)
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.”

“. . . 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?”

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). Children’s Medical Ventures, Inc., South Weymouth, MA.
What Families say…

“I have never cried as much as I did during the first week

of my baby’s 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 picked 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). Children’s Medical Ventures, Inc., South Weymouth, MA.
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
„ 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
What Families say…

“The birth of a child should be a joyous, blessed event. . .

I remember feeling confused, angry, sad, frustrated and
scared.”

“When I was discharged from the hospital I felt guilty,

like I was betraying my baby by leaving him behind.”

“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 wouldn’t have the emotional or
financial resources to take care of another child.”

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) . Children’s Medical Ventures, Inc., South Weymouth, MA.
IMPACT on FAMILIES

„ NICU experience places huge strains on a

couple’s relationship; can also strain
relationships with other family members when
asked to continue providing support
„ It’s difficult to provide for needs of other children
in family, feel torn in many directions
„ Effects of the experience often exist long after the
baby comes home
What Families say…

“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.”

“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.”

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 Mommie’s 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). Children’s Medical Ventures, Inc., South Weymouth, MA.
Providing
Developmentally
Supportive
Care
What is
DEVELOPMENTALLY SUPPORTIVE CARE?

„ Based on principles of NIDCAP

(Newborn Individualized Developmental
Care and Assessment Program)
„ Assessment of overall nursery environment
„ Assessment of individual infant’s
environment
„ Provides individualized care to babies
„ Provides recommendations to family and
medical staff to enhance infant development
What kinds of
RECOMMENDATIONS are made?

„ Overall nursery environment

9 Arrangement of equipment and supplies
9 Ideas for decreasing light, sound, activity levels
„ Individual infant’s bedspace
9 Type and configuration of bedding/clothing
9 Appropriateness of pacifier
9 Ideas to assure bedspace is appropriate based
on baby’s current gestational age
„ Individualized caregiving strategies
„ Suggestions for family involvement
 HANDOUTS:
• NIDCAP (Newborn Individualized Care
and Assessment Program)
• Developmentally Supportive Care
What practices are involved in providing
DEVELOPMENTALLY SUPPORTIVE CARE?

„ Attention to environment
„ Positioning
9 Encourage hands-to-mouth, midline alignment
9 Arms and legs flexed and tucked
9 Nests to provide security, boundaries to facilitate
self-regulation and provide proprioceptive input
9 Kangaroo holding
„ Feeding
9 Determine readiness
9 Choose appropriate nipple
9 Model appropriate strategies for staff, families
What practices are involved in providing
DEVELOPMENTALLY SUPPORTIVE CARE?

„ Care giving strategies

9 Education regarding infant cues
9 Advanced planning to minimize handling,
over-stimulation
„ Education and support for families
9 Principles of developmentally supportive care
9 Reading infant stress signals
9 Strategies for being involved in their baby’s care
9 Resources and referral to early intervention
programs/support groups/social service agencies
Why is it good practice to provide
DEVELOPMENTALLY SUPPORTIVE CARE?

„ Promotes improved outcomes for babies

¾ Off ventilator sooner, require less oxygen support
¾ Increased weight gains
¾ Successful nipple feeding sooner
¾ Earlier discharge from hospital
¾ Decrease in developmental delays
„ Adds developmental perspective to medical
approach
„ Recognizes family members as important
members of infant’s care team and works to
create a partnership
 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.”
“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 child’s 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).
Children’s Medical Ventures, Inc., South Weymouth, MA.
 So . . .
what’s an EI person
supposed to do?
 IMPLICATIONS for PROVIDING
EARLY INTERVENTION SERVICES

„ Be aware of sensory impact of NICU experience

and implications for intervention strategies.
„ Be consistent and proactive in securing and
reading medical records/reports of children who
spent time in the NICU before coming to EI.
„ Give families space and time – they need and
deserve it!
„ Look for creative ways to make connections
within the neonatal medical community.
 And last but not least. . .

Take this new

perspective with
you and never let it go!