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Prematurity and Early Intervention: Prevalence, Issues, and Trends
- 1. Today’s Presenters CoriBeth Nancy Tina Ginny Part C Technical Assistance Consultant Pediatric Occupational therapist for Fairfax-Falls Church Infant Toddler Connection Physical Therapist who works with Prince William County’s EI program & at Prince William Hospital specializing in the NICU Physical Therapist & local system manager from Prince William County
- 2.
- 3. February Prematurity WebinarTake 2! 12pm-1pm “ Technical Difficulties”
- 4. Purpose Provide informationabout prematurity Identify challenges Discuss eligibility determination Review Impact of prematurity on development Share local system experience
- 5. Definitions Extremely Premature Very Preterm Late Preterm Premature 28 weeks 32 weeks 34-36 weeks 37 weeks
- 6. Prematurity Population Approximately100,000 babies are born in Virginia each year 10-12% of these are premature 10,000 – 12,000 babies per year
- 7. Child Count StatisticsDecember 1, 2010 Child Count 919 children less than age one 6,341 children birth through age two 1754 (28%) premature or low birth weight Annual Count 12,145 children received EI services between Dec. 2, 2009 & Dec. 1, 2010
- 8. Issues and ChallengesFound Ineligible Not Referred Referred Too Soon Families Not Ready Re-referred Later Not Referred Later Physicians Stop Referring Which issues and challenges have you faced?
- 9.
- 10. EI Prematurity WorkgroupRevise Eligibility Criteria | Education of Three Groups Families Strengthen Communication and Collaboration EI Providers Referral Sources
- 11. EI Prematurity WorkgroupProjects Brochure for Parents Subgroup for training of EI providers
- 12. Early Intervention EligibilityDiagnosed condition with a high probability of resulting in developmental delay 25% or greater developmental delay Atypical Development
- 13. Additions to Listof Diagnosed Conditions 28 weeks or less gestational age 28 days or more in the NICU Periventicular leukomalacia
- 14. Eligibility: Developmental DelayAdjusting Babies Age For Prematurity
- 15.
- 16. Eligibility: Atypical DevelopmentHow do you use the atypical development category in determining eligibility for premature babies?
- 17. Impact of Prematurityon Development
- 18. Early Sensory ExperiencesAffect Brain Development
- 19. Tactile System Fetusresponds to touch 8 to 10 weeks after conception First develops in the parts of the body used for exploration Most mature sensory system at birth
- 20. Tactile System Avoidancereactions predominate in utero Approach behaviors predominate in the full term newborn Tactile contact associated with greater emotional stability Association of tactile information with other senses occurs later in infancy.
- 21. The Vestibular SystemDetects movement, gravity, head position One of the first systems to become functional Fetus receives strong vestibular input the first 2 trimesters
- 22. Taste and SmellImportance in Newborn Recognition of mother Development of attachment Stimulates sucking and facilitates feeding The fetus practices swallowing in utero Experience primarily related to feeding Clear taste preferences in newborns May show preferences/avoidances to some fragrances
- 23. Auditory Responds tosound by the 2 nd trimester Full term neonate able to respond selectively to a variety of sounds. Shortly after birth, full term infants show preference for their mother’s voice. Excessive noise levels documented in NICU
- 24. The Visual SystemProcessing of visual information develops later in the fetus Vision is the only system not dependent on external stimulation for development in utero. By 32 weeks infants attracted to reddish objects Full term neonates have sophisticated visual processing abilities
- 25. The Visual SystemPreterm infants have a higher incidence of Myopia (blurred distance vision) Strabismus (abnormal alignment of one or both eyes) Visual- perceptual and fine motor delays Exposure to direct light may negatively effect the development of vision and other neurosensory systems
- 26. What is thisinfant experiencing? Think about ways this infant’s world now differs from his life in the womb.
- 27. Synactive Theory ofInfant Development Heidelise Als Hierarchical interaction and interdependency of five subsystems Self - Regulation Attention / Interactive Behavioral State Organization Motor Organization Physiological Stability
- 28. Signs of Stability (Self Regulation/Approach)
- 29. Irritability Gaze aversionHyper alertness with a staring and wide open eyes Roving eye movements Glassy-eyed appearance Sleeplessness and restlessness Behavioral Signs An Infant Is Not Ready For Interaction
- 30. Signs An InfantIs Not Ready For Interaction Sudden change in tone Flaccidity Stiffness “ sitting on air” Arching Finger splaying Grimacing/frowning Jitteriness Frantic movements Motor Signs
- 31. Color changes Bluenessaround the mouth Skin mottling Change in respiratory rate or rhythm Change in heart rate Coughing Sneezing Yawning Vomiting Bowel Movement Hiccups Physiological Signs An Infant Is Not Ready For Interaction
- 32. Question How haveyou used and infant’s motor, behavioral, and physiological signs of stability and stress to guide intervention?
- 33.
- 34.
- 35. The premature infantdoes not achieve the full amount of flexor tone seen in the full term infant. Atypical Patterns
- 36.
- 37. Additional Signs ofPathology in Motor Development Stiff legs or arms with little or no movement Difficulty lifting head Arching of neck and trunk when on their back Asymmetries
- 38. What motor patternsdo you observe in this infant born at 23 weeks GA (chronological age 16 mos., adjusted age 12 mos.)? What Do You See?
- 39. What do yousee in this position? What Do You See?
- 40. Asymmetry Additional Factorsto Consider when Determining Eligibility
- 41. Additional Factors toConsider when Determining Eligibility Sensory Processing
- 42. Additional Factors toConsider in Determining Eligibility Feeding
- 43. Prince William ExperienceTypical “for preemie” vs. atypical
- 44. Prince William Experience40% increase in birth to one child count
- 45.
Editor's Notes
- #2 Hi Everyone: I am Cori Hill and I am joined by my colleagues, Beth Tolley, Part C Technical Assistance Consultant from the State Part C office Nancy Farmer Brockway, pediatric occupational therapist for Fairfax-Falls Church Infant Toddler Connection, Tina Hough, a physical therapist who works with Prince William County’s EI program and also at Prince William Hospital specializing in the NICU, and Ginny Heuple, physical therapist and local system manager from Prince William County.
- #3 Thank you for joining us for our January Talks on Tuesday, sponsored by Virginia’s Integrated Training Collaborative also referred to as the ITC The ITC is funded by Virginia’s Part C Lead Agency, the Dept. of Behavioral Health and Developmental Services (or DBHDS) to coordinate and administer VA’s Comprehensive System of Personnel Development for the early intervention workforce. The Dept. contracts with VCU’s Partnership for People with Disabilities to administer two contracts related to professional development. Today’s “Talks on Tuesday” is one of a variety of activities included in that contract.
- #4 Photo from http://www.flickr.com/photos/aaocarroll/4363564302/
- #5 Hello and thank you for joining us today. The purpose of today’s webinar is to provide information about some of the challenges facing the early intervention system in serving babies who are premature, as well as steps that are being taken to address those challenges. We will review eligibility determination and discuss how premature babies may be found eligible for early intervention services. Nancy and Tina will provide information about the impact of prematurity on development. Ginny will share with you what happened in her locality when they reconsidered how they were interpreting information assessment teams gathered to determine eligibility. And finally, we will have an opportunity for questions.
- #6 First, we need to define “prematurity”. Babies who are born at less than 37 weeks gestational age are considered premature. Babies who are born at 34-36 weeks gestational age are considered “late preterm”. There is an expanding body of research indicating that late preterm babies have more difficulties than originally thought. Though we will not be talking specifically about this population today, it is important to recognize that this group of premature babies is at risk for developmental difficulties. Babies born at less than 32 weeks gestational age are considered very preterm and those born at less than 28 weeks gestational age are considered extremely premature.
- #7 Approximately 100,000 babies are born in Virginia each year. Of these, 10-12% are premature. So between 10,000 and 12,000 premature babies are born each year in Virginia.
- #8 To put this in perspective in terms of early intervention, let’s look at the number of children receiving early intervention services. On December 1, 2010, 919 children under age one were currently being served in early intervention and a total of 6,341 children from birth through age 2 were being served. Of those 6, 341 children, 1754 (28%) were identified in ITOTS as premature and/or low birthweight. Since December 1 is a point in time count, its helpful also to look at the annual child count. 12,145 children were served through the Infant & Toddler Connection of Virginia. between December 2, 2009 and December 1, 2010. It is important to note that Virginia is not serving the number of babies expected to be eligible. We are serving a lower percentage of infants and toddlers than most states in the nation.
- #9 There are a number of issues and challenges with serving babies born prematurely. These include: Babies being found ineligible Some premature babies are never referred to early intervention, but are later found to have delays or disabilities when they enter school Sometimes families of babies referred to early intervention when they are discharged from the NICU decline services because they are not ready to do anything except learn to take care of their baby Some of the babies who were originally found ineligible are re-referred later when disabilities or delays are more evident Some of the babies who are initially found ineligible are not seen again even if they do end up having delays And finally, some referral sources stop referring when a number of the babies they refer are found ineligible.
- #10 In order to address these issues, a statewide multidisciplinary, multiagency work group was convened in August 2010 to identify and develop strategies to improve outcomes for babies who were born prematurely.
- #11 This group has focused initially on eligibility and on education and training needs. We will discuss eligibility later in the webinar. Regarding training, three audiences have been identified: early intervention providers, families of premature babies and referral sources. The group is also working to improve communication and collaboration across agencies and organizations that serve premature babies across the state of Virginia
- #12 A subgroup is currently developing a brochure for families whose babies are in NICUs. The brochure will go beyond simply listing milestones, but will also include information about temperament and sensory development. Red flags that indicate a need for referral to early intervention will also be included, as will details about how to contact the early intervention system. A second group has been formed to identify resources and develop training for early intervention providers, including service coordinators.
- #13 Let’s talk now about Part C eligibility and prematurity. As you know, there are three criteria that are used to determine eligibility; diagnosed conditions which have a high probability of resulting in developmental delay, and/or 25% or greater delay in one or more developmental areas and/or atypical development. If any one of these criteria are met, the child is eligible for part C early intervention.
- #14 Based on recommendations from the Prematurity Work Group and the Virginia Interagency Coordinating Council (VICC), the State Lead Agency is adding the following conditions to the list of diagnosed physical and mental conditions with a high probability of resulting in developmental delay: Periventricular leukomalacia, and Neonatal factors that make developmental delay highly probable: Gestational age ≤ 28 weeks, or NICU stay ≥ 28 days. This means that children who meet any of these criteria are automatically eligible for Part C even if they are not currently showing a developmental delay or atypical development.
- #15 Now lets look at the developmental delay criteria. It has been suggested the baby’s age not be corrected for prematurity when determining whether there is a 25% delay. The Part C Office requested assistance from physicians several years ago and again last year to consider whether or not this practice of adjusting babies age for prematurity should be continued. In both cases, the recommendation was that we continue to adjust for prematurity when assessing development at least until 18 months if not until 2 years of age.
- #16 Another issue that makes using the developmental delay category challenging to use for very young babies is the fact that most assessment tools do not have many items for very young babies. Thus, very young babies may not be found eligible on the basis of developmental delay because of the adjustment for prematurity combined with the lack of detailed assessment tools for very young babies.
- #17 Now, let’s move to the last criteria for eligibility, atypical development. Please jot down the ways you are using atypical development in determining eligibility for premature babies. Discussion Now I will turn the webinar over to Nancy, who along with Tina will provide information that can assist you in using the atypical category for determination of Part C eligibility
- #18 Hi this is Nancy. Today we will be discussing the early sensory-motor experiences of the premature infant, how these experiences affect development, and factors to consider when determining eligibility. Premature infants have a higher incidence of gross and fine motor difficulties, visual motor difficulties, and increased need for special education services compared to full term infants. They are also at increased risk for behavioral related problems.. We hope that this brief introduction to the issues related to prematurity will be a starting point for further study by participants. Now, let’s look at where these infants start out and how their early experience impact their development.
- #19 It is well documented that normal brain development depends on exposure to appropriate amounts, types, and sequence of sensory input. Conversely, inappropriate amounts, types, and sequence of input can be detrimental to brain development. We’ll now briefly review the developing sensory system. .
- #20 The Tactile System develops very early in the fetus. The fetus first responds to touch 8 to 10 weeks after conception. It first develops in the parts of the body used for exploration, the mouth and the hands. Responses to touch are first seen at the mouth at 8.5 weeks post conceptual age and the hands at 10-11 weeks post-conceptual age. The tactile system is the most mature sensory system at birth. Although it is the most mature system, the preterm infant’s tactile system is highly sensitive and easily over stimulated.
- #21 The fetus primarily responds to touch with avoidance reactions.. Approach behaviors like rooting, cuddling, and the grasp reflex are the predominate reactions observed in the full term newborn. Both animal and human studies have associated tactile contact with greater emotional stability.
- #22 The Vestibular system detects movement, gravity, and head position. It is one of the first systems to become functional. The Fetus receives strong vestibular input the first 2 trimesters in utero. The fetus responds to movement by righting the head and body and by ocular movements. The premature infant is deprived of those early movement experiences that occur inside the womb. Once born, the premature infant must contend with the force of gravity, imposed position changes, and elimination of typical movement experiences. Premature infants may demonstrate hypersensitivities to movement and position related to nervous system immaturity, tonal abnormalities and delayed balance reactions. In the full term infant, the level of maturity of the vestibular system is demonstrated by ocular reflexes and the influence of movement and position on the state or level of arousal of the infant.
- #23 In the full term neonate, the senses of taste and smell are primarily related to feeding. The fetus practices swallowing in utero. By 32-34 weeks gestational age they demonstrate coordinated suck and swallow patterns. Newborns show clear taste and smell preferences and avoidances. Premature infants may respond to noxious odors with a decreased respiratory rate, periodic apnea and increased heart rate. The senses of taste and smell are crucial for the newborn’s recognition of the mother and the development of attachment. Taste and smell stimulate sucking and facilitate feeding.
- #24 Fetus’ respond to sound by the 2 nd trimester with total body movement. In utero, some sounds are amplified by the amniotic fluid. The full term neonate is able to respond selectively to a variety of sounds. Shortly after birth, full term infants show a preference for their mother's voice. The premature infants’ auditory system is highly sensitive and they have extreme difficulty habituating to sound. Excessive noise levels documented in NICU may increase the risk for hearing loss and cause sleep disruptions in the premature infant. Interruptions in the sleep cycle negatively impact weight gain and overall development.
- #25 Processing of visual information develops later in the fetus. Vision is the only system not dependent on external stimulation for development in utero. By 32 weeks gestational age, infants are attracted to reddish objects. Full term neonates have sophisticated visual processing abilities including fixation and tracking.
- #26 The premature infant’s early exposure to direct light may negatively affect the development of vision and other neurosensory systems. Premature infants have a higher incidence of myopia , strabismus, visual perceptual and fine motor delays.
- #27 Think about the sensory world of this infant and how it differs from what he experienced and should still be experiencing if in the womb. Please take this opportunity to write down some ways his world now differs from his life in the womb.
- #28 We would now like to briefly review The Synactive Theory of Infant Development. The Synactive Theory of Infant Development, as postulated by Heidelise Als, proposes a hierarchical interdependency between the autonomic, motor, behavioral state organization, attention/interaction, and self-regulatory subsystems in the preterm neonate. When interacting with the environment, the infant strives to regulate its responses in order to maintain a balance among the 5 subsystems. In order for higher subsystems to be expressed, stability in the lower subsystems must be attained. The preterm infant must be physiologically stable in order for optimal expression of the other 4 areas. The preterm infant requires more environmental support than the full term infant to maintain equilibrium. Full discussion of this theory is beyond the scope of today’s presentation. However, we would like to share some of the behavioral, motor and physiological signs of stability and stress the preterm infants show that indicate they are available for interactions.
- #29 Some signs that an infant is available for interactions include: Smooth respiration Pink, stable color Animated facial expression with bright eyes “ Oh” face Cooing Smiling Sucking efforts Hand to mouth Hand clasping Well regulated muscle tone with smooth body movements
- #30 Some behavioral signs that indicate an infant is not available for interactions include: Irritability, Gaze aversion, Hyper alertness with a staring and wide open eyes Roving eye movements Glassy-eyed appearance Sleeplessness and restlessness
- #31 Some Motor signs include: Sudden change in tone Flaccidity Stiffness Arching Finger splaying Grimacing or frowning Jitteriness Frantic movements
- #32 Some physiological signs that warrant close monitoring include: Color changes Blueness around the mouth Skin mottling Change in respiratory rate or rhythm Change in heart rate Coughing Sneezing Yawning Vomiting Bowel Movement Hiccups
- #34 Tina will now discuss the motor development of the premature infant.
- #35 Hi, this is Tina. As we’ve just heard, every system is affected by a premature birth. Thus it follows that a premature baby’s motor system will also develop differently than a full term baby’s motor system. Early preterm infants show global hypotonia. The degree of hypotonia is related to the degree of prematurity. As preemies develop, muscle tone increases, however, when assessed at adjusted age of 40 weeks the premature infant will not have the same degree of flexor tone as a full-term infant. The preterm infant demonstrates increased patterns of extension (or straightening of the limbs) and abduction (or movement of the limb away from midline) with decreased patterns of flexion (bending of the limb) and adduction (movement of the limb toward midline). In contrast, a full-term infant is typically in a very flexed and adducted position. One example of this difference is that a full term baby’s knees typically are bent in a 60 to 90 degree angle whereas a premature infant’s knees may straighten up to 180 degrees.
- #36 Research by Saint-Anne Dargassies and others tells us that the premature infant will not achieve the full amount of flexor tone seen in the full term infant. Primitive reflexes in the preterm infant are also absent, reduced or inconsistent. Additionally, the early preterm infant’s movement patterns tend to be random, wide ranged and poorly organized. Because the premature infant does not achieve the full amount of flexor tone, an imbalance between extensor and flexor muscle groups develops. This imbalance interferes with midrange head control, bilateral hand skills, and balance in all positions. Thus the premature infant’s movement patterns are atypical compared to a full term infant.
- #37 Environmental factors also affect a preterm infant’s development. For example, preterm infants that spend prolonged time on the ventilator often exhibit increased hyperextension of the neck and shoulders, elevation of the scapula, arching of the trunk and immobility of the pelvis.
- #38 Additional Signs of Pathology in Motor Development may include: stiff legs or arms with little or no movement, difficulty lifting the head enough to turn to either side when on their tummy, exaggerated arching of neck and trunk when on their back, and obligatory asymmetrical position of the head, arms or legs.
- #39 What motor patterns do you observe in this infant, born at 23 weeks GA, whose chronological age is now 16 months, and thus is adjusted to age 12 months.? Use the chat box to type in a few of your observations. (In case no one responds….) These are the things we can see here… The baby is tiptoeing, hyperextending her knees, and her hips are abducted & externally rotated. These are all good observations. Let’s continue.
- #40 This is the same child. What do you see now that she is sitting? Again, write your observations in the chat box. (In case no one responds…) We can see here that she is hyperextending her neck, rounded back, hip abduction and external rotation all consistent with low muscle tone. These are all good points. Let’s continue now.
- #41 There are additional factors to be considered when determining eligibility. Asymmetry of the arms and legs is one. Observing a child at play doing two handed activities may highlight asymmetries or poor bilateral skills that would also help with eligibility determination.
- #42 Premature infants are at increased risk for sensory processing disorders. It’s important to consider how the child responds to the sensory input he receives from his body and the environment. Signs of sensory processing difficulties in the very young infant include poorly defined states, rapid state changes with unpredictable cycles, difficulties tolerating changes in position, and poorly developed eye contact. The stress signs that Nancy discussed earlier may also indicate an infant having difficulty with sensory processing. . As part of your assessment, ask yourself, does the child’s sensory processing skills support or interfere with his/her full participation in activities at home and in the community.
- #43 Premature infants are at increased risk for feeding disorders and feeding concerns should be included in eligibility determination. The Neonatal Oral-Motor Assessment Scale is useful in identifying young infants with atypical oral-motor skills that impact feeding. In older infants, it is important to monitor their transition to solid foods at adjusted age of 4 to 6 months . Evaluation of their ability to consume adequate amounts and varieties of foods (including various textures) in order to sustain growth and development is helpful in determining eligibility. Now, Ginny will discuss the changes in number of children found eligible when Prince William County staff examined how they were assessing babies born prematurely
- #44 In the spring of 2010 in our local system we had a discussion about our interpretation of the eligibility criteria for Part C – especially related to infants born prematurely. We realized that we had been rationalizing many characteristics of pre-term infants. One of those being the abnormal muscle tone often seen at different times during a pre-term infant’s development. We had looked at this as “typical for a preemie” and looked at things such as the state control issues as “typical of an infant just out of the NICU”. We often times found these prematurely born infants not eligible for services when we looked at their development as “typical for a preemie” even though we most likely would have found a baby born at 40 weeks who presented in this manner eligible. When we sent those infants and their family home after finding them ineligible we always told them to call us in the future if their child did not gain skills or if concerns developed in the future, but always worried that they might not call us back in the future – many did not. Those that did always made us feel that we may have missed valuable time with them.
- #45 We decided at that time to stop rationalizing for infants born prematurely – for example, to stop looking at hypotonia in a young preemie as ‘typical for a preemie’ and to look at this as Atypical muscle tone – even though we knew preemies presented this way. So in fact this is “typical for a preemie” but none the less atypical development. We began using the ATYPICAL category to find these children eligible at that time. Our 0-1 numbers of eligible children increased 40% within 3 months. Due to the recent addition of the previously discussed criteria related to pre-term infants to the list of automatically eligible diagnoses hopefully we will all begin serving more of these vulnerable infants and 0 – 1 counts around the Commonwealth will increase toward meeting our goals. (Turn presentation back over to Cori)
- #46 We’d like to thank you for joining us for our Talks on Tuesday. As a reminder, this webinar has been recorded and it will be archived and available on the early intervention professional development website within a week to 10 days. A a final reminder, please be sure to complete the survey when you receive it via email. Your input is important to us. Thank you and enjoy the rest of your afternoon.