The NICU Experience: Its Impact and Implications

1. 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.

2. 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

3. 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

4. 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

5. 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 • A look at environments: • Intensive Care Nursery vs. Womb

6. 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

7. 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

8. VESTIBULAR SYSTEM System is functional by Week 21 Clinical 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

9. 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

10. 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

11. 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

12. 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

13. 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

14. 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 appropriateintervention

15. 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

16. 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

17. VISUALSYSTEM 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

18. 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

19. Effects of the NICU Environment on Sensory and Neurological Development The infant’s 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

20. 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

21. 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

22. 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

23. 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

24. What can be done to promote better outcomes?

25. We can provide Individualized Developmentally Supportive Care

26. 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

27. 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

28. 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

29. 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

30. Can anyone be prepared for such an event? NO!

31. Can anyone survive such an experience? MAYBE!

32. What kind of anIMPACTdoes this have onfamilies?

33. 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)

34. 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

35. 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

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

37. 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

38. And last but not least… Take this new perspective with you and never let it go!