Star-Gazing:

Medical and

Therapy Issues Huntsville Hospital Health System

Kimberly Limbo, MD

Stephanie Gyorok, PT and Mary Cofer, PT

Denise McNichol, OTR and Ginger Mason SLP

Disclosures

Dr. Limbo has no disclosures

Stephanie Gyorok, PT has no disclosures

Mary Cofer, PT has no disclosures

Denise McNichol, OT has no disclosures

Ginger Mason SLP has no disclosures

Overview of Medical Conditions

followed by Pediatric Neurology

Infants who underwent induced hypothermia

In utero stroke

Congenital CMV

Brachial Plexus Injury

Plagiocephaly

Brain malformations

Preterm infant

Intraventricular Hemorrhage (IVH) of newborn

Induced Hypothermia

Which infants qualify

36 week or older gestational age

Initiation within 6 hours of life

Severe acidosis within 1st hour life

Perinatal complications

Resuscitation at birth – APGAR less than 5 at 10minutes or

need continued ventilation at birth for at least 10 minutes

afterward

Induced Hypothermia

Goal of induced hypothermia is to reduce risk of death

or disability in infants with moderate to severe hypoxic

encephalopathy

Aim to decreased body temperature between 33.5*C to

34.5*C fro 72 hours

Rewarm gradually at 0.5*C per hour until desired range

(36.5*- 37*C)

Induced Hypothermia

What occurs during cooling

Decreased heart rate

Decreased metabolic rate and shivering

Induced Hypothermia

Outcome

Goal to diminish neurological impairment related to initial

brain injury

Followed in clinic for first 12 to 18months

- Monitor head circumference

- Monitor development

- Monitor for seizures

In Utero Stroke

Neonates differ from Adults

• Etiology is not well understood

• May not be identified until infant is older

• Perinatal can present with seizures and perinatal distress

in term infant

• Often identified on MRI Brain

• Coagulation testing not indicated

• Risk of recurrence is low at later time in life

In Utero Stroke

Most affect the Middle Cerebral Artery

Outcome affects more motor issues with sequela of

cerebral palsy

Monitor of use of affected side for weakness and

spasticity

Possible development delay

Seizure not common after neonatal period

In Utero Stroke

Treatment goal is to minimize deficit of affected side

Constraint induced therapy can be useful

Congenital CMV

Clinical findings and imaging

Change in therapy

Change in developmental outcome

Hearing Concerns

CMV symptoms at birth

Small size for gestational age (39 to 50 percent)

Microcephaly (36 to 53 percent)

Sensorineural hearing loss (SNHL, present at birth in 34

percent)

Lethargy and/or hypotonia (27 percent)

Poor suck (19 percent)

Seizures (4 to 11 percent)

CMV – imaging findings

• Periventricular calcifications

• Periventricular leukomalacia

• Ventriculomegaly

• Vasculitis

• Polymicrogyria

CMV treatment

10 years ago – no treatment

Ganciclovir – IV treatment twice a day for 6 weeks

Valganciclovir – oral treatment twice a day for 6 months

Followed by Pediatric ID/CMV clinic in Birmingham at

Childrens Hospital

CMV outcome

Prior to treatment – significant development delays and

hearing loss

Post anti-viral treatment – diminished development

delays and hearing loss

Hearing loss is sensorineural –hearing evaluation every 6

months for 1st 3 years of life and then yearly til 6 years

old

Hearing loss -fluctuate severity & age of onset

Brachial Plexus Injury

Stretch injury

Outcome

Goals of therapy

Surgical Intervention

Brachial Plexus Clinic at Children’s Clinic in

Birmingham

Plagiocephaly

Cosmetic issue

Window of time to intervene – positioning and use of

Tortle

Helmet use issue – limitations as insurance often not

cover and length of use and adjustments

Craniofacial Clinic at Children Hospital in Birmingham

Brain Malformations

Hydranencephaly

Holoprosencephaly

Schizencephaly

Polymicrogria

Agenesis of Corpus Callosum

Most brain malformations are associated with seizures

Hydranencephaly

Occurs in second trimester

Exact cause remains undetermined in most cases, the most likely general cause is by vascular insult such as stroke or injury, intrauterine infections, or traumaticdisorders after the first trimester of pregnancy

Brain's cerebral hemispheres are absent and replaced by sacs filled with cerebrospinal fluid

An infant with hydranencephaly may appear normal at birth.

Associated with: development delay, seizures, spasticity, visual and hearing deficits, endocrine issues, and macrocephaly

Holoprosencephaly

Occurs in early - prior to 5th week of gestation

Brain doesn't properly divide into the right and left hemispheres.

If severe = can also affect development of the head and face

Linkes to mutations in at least 14 different genes, chromosome abnormalities; maternal diabetes, alcohol and retinoic acid

Based on severity associated with: seizures, hydrocephalus, endocrine issues, feeding difficulties, and instability of temperature, heart rate, and respiration, developmental delay

Schizencephaly

Abnormality in formation of cerebral hemisphere

Majority are sporadic

Has been linked to mutation in 4 genes: EMX2, SIX3, SHH, and COL4A1

Can be associated with:

Development delay

Seizures

Microcephaly

Intellectual disability

Hemiparesis

Polymicrogyria

Occurs late in pregnancy

Is result when surface of the brain develops too many folds which are unusually small.

Signs and symptoms associated with the condition vary based on how much of the brain and which areas of the brain are affected

Linked to some genetic and chromosomal abnormalities and infection such as CMV

Associated with:

Seizures, development delay and weakness

Agenesis of the

Corpus Callosum

(ACC)

Corpus callosum connects right and left brain

Occurs between 8th to 20th week of pregnancy

No single cause – 95% sporadic in occurrence, some related to genetic abnormality

Component in >100 syndromes

ACC has variable prognosis

Can be associated with other brain anomalies

Associated with:

Delays with motor, language and/or cognitive milestones

Seizures

Endocrine issues

Intraventricular Hemorrahage

(IVH)

Risk factors

Grade of IVH

Possible sequela

Monitoring in NICU and once home

Risk Factors of IVH

infants <750 grams

assisted conception

intrapartum factors (emergency cesarean section, low Apgar scores)

early neonatal complications (patent ductus arteriosus, pneumothorax, pulmonary hemorrhage)

blood gas disturbances, and need for pressor, volume infusion, and respiratory support

Grades of IVH

grade I restricted to

subependymal

region/germinal matrix grade II extension into normal sized ventricles and typically

filling less than 50% of the volume of the ventricle

grade III extension into dilated ventricles

grade IV grade III with

parenchymal haemorrhage

Possible Sequela of IVH

• Grade 1 & 2 with good prognosis

• Grade 3 & 4 more likely to have deficit

• Spasticity with sequela of cerebral palsy

• Hydrocephalus

• Developmental and learning delays

Medication options for

Spasticity

Botox

Baclofen

Botox

Derived from Botulimun Toxin

Off-label for children under 12 yo

Indications

Typical age when done

Who does it – Rehab, orthopedics, neurology

Duration and goals

Baclofen

Indications

Oral

Intrathecal Pump

Who is candidate

How does it work

Refill and Duration

Red Flags for Referral to

Neurology

Regression of Milestones attained

Asymmetric Use of Extremities

Abnormal Tone

Increased

Decreased

MRI brain normal as newborn

• Misnomer if neurological concerns

• When to repeat MRI brain

Resources for Family &

Providers

Specific Websites

https://rarediseases.info.nih.gov/diseases

https://www.ninds.nih.gov/

https://espanol.ninds.nih.gov/

Children Hospital of Birmingham Clinics

Craniofacial Clinic

Spasticity Clinic

Brachial Plexus Clinic

THERAPUTIC MANAGEMENT OF THE

PRETERM INFANT

TIMES ARE CHANGING

11.7% of neonates are born preterm annually

Over 40,000 infants born each year in US are extremely

preterm less than 28 weeks = approximately 1% of live

births

Incidence of feeding problems in 19-80% of extremely

preterm infants

TIMES ARE CHANGING

There is now an increase in survival rates of extremely preterm infants secondary to advances in medical care

With improved survival rates there are increased risks for nutritional, growth, motor and sensory problems

Delay of acquiring feeding skills is the most frequent cause of prolonged hospitalization in the NICU

Delay of acquiring feeding skills negatively affects family relationships

Do we impact brain

development?

NEUROPROTECTION

Neuroprotection = interventions that promote brain

development and prevent neuronal injury in the

developing premature neonate related to stress and/or

pain.

Interventions that promote neuronal connectivity are

essential to protect the developing brain.

ALL EARLY experiences affect the developing brain

Repeated stressful experiences during feeding are

believed to establish altered pathways in the infants

developing brain that guide the infant away from

feeding, lead to maladaptive behaviors, and adversely

affect the ability and desire to feed both in the NICU

and well into childhood.

Shaker, 2017

NEUROPROTECTION

5-15% of very preterm infants have neurobehavioral

disabilities (ex. CP) and severe neurosensory impairment

50-70% VLBW (≤ 1500g) have later dysfunction that impedes

school progress

Preterm birth is associated with high rates of both poor

neurobehavioral organization and cognitive function

Typical NICU environment is stressful for infants leading to

maladaptive physiological processes and predisposition to

disease and poorer developmental outcomes.

(Pickler 2013)

NEUROPROTECTION

Even infants without neurologic injury may develop

cognitive dysfunction with decreased attention,

memory, and reasoning skills

The human brain is functionally altered through

experience, and all experience is filtered by the senses

(touch, taste, smell, sound, and sight)

EI strategies seek to take advantage of neuroplasticity

which is most sensitive 2-3 months -15-18 months after

term age, congruent with a goal of neuroprotection.

(Pickler 2013)

WHERE DO WE START?

MULTI-DISCIPLINARY

EVALUATION OF INFANTS

Case History Intake

Age of infant

Pregnancy History

Delivery history

NICU History

Detailed medical history

Feeding history- Feeding problems/recommendations/positions

Hearing History- Newborn Hearing Screen (NBHS)-Diagnosis/meds related to hearing loss

Family/social history

MULTI-DISCIPLINARY

EVALUATION OF INFANTS

Musculoskeletal screen

Neuro screen

Integumentary screen

Cardio respiratory screen

Infant/Child state, movement patterns

MULTI-DISCIPLINARY

EVALUATION OF INFANTS

Age at initial visit

• CGA (current gestational age) : actual days since

birth

• Corrected age : Chronological age – number of

weeks born before 40 weeks of gestation

• Gestational age : Time from the first day of the last

menstrual period and day of delivery

• PMA (post menstrual age) : Gestational age +

chronological age

MULTI-DISCIPLINARY

EVALUATION OF INFANTS

Pregnancy history

Drug use

Gestational diabetes

Pre-eclampsia

PIH – pregnancy induced hypertension

NPC – No prenatal care

MULTI-DISCIPLINARY

EVALUATION OF INFANTS

Delivery history

Birth presentation

Use of assistance during delivery (forceps, vacuum

suction)

What complications led to preterm delivery

PROM – premature rupture of membranes

Placenta abruption

NRFS - Non-reassuring fetal status

MULTI-DISCIPLINARY EVALUATION OF

INFANTS

NICU Diagnoses

Time spent in NICU

NICU interventions and diagnoses

Ventilator

O2 dependent

ROP – retinopathy of prematurity

Feeding / swallowing problems

including special positioning needed for feeding

MULTI-DISCIPLINARY

EVALUATION OF INFANTS

NICU Diagnoses

Prematurity

Extremely Pre-Term- under 28 weeks

Extremely low birth weight – under 1000 grams

RDS- Respiratory Distress Syndrome

BPD- Bronchopulmonary Dysplasia

NEC- Necrotizing Enterocolitis

NAS- Neonatal Abstinence Syndrome

GBS – Group B Strep or other infections

CMV – Cytomegalovirus

MULTI-DISCIPLINARY

EVALUATION OF INFANTS

Neurological Impairment

IVH-Intraventricular Hemorrhage

PVL-Periventricular Leukomalacia

Hypoxic Ischemic Encephalopathy

Kernicterus- high bilirubin levels

MULTI-DISCIPLINARY

EVALUATION OF INFANTS

• Cardiac Disorders

• Patent Ductus Arteriosus (PDA)

• Atrial Septal Defect (ASD)

• Ventricular Septal Defect (VSD)

• Digestive Tract Disorders

• GER/GERD

• Pyloric Stenosis

• Motility Disorders

• NEC

• Short Gut

• Eosinophilic Esophagitis

• Hirschsprung’s Disease

MULTI-DISCIPLINARY

EVALUATION OF INFANTS

Failure to Thrive/Poor Weight Gain

Respiratory

Respiratory Distress Syndrome (RDS)/Chronic Lung Disease (CLD)

Bronchopulmonary Dysplasia (BPD)

Tracheal Stenosis

Laryngomalacia/tracheomalacia

Craniofacial Anomalies

Clefts

Pierre Robin Sequence

Goldenhar

Treacher Collins Syndrome

MULTI-DISCIPLINARY

EVALUATION OF INFANTS

Musculoskeletal Screen

o Symmetrical shape of the face, skull, and spine

o Rib cage symmetry

o Hip dysplasia

o Symmetrical neck ROM

o Palpation for sternocleidomastoid (SCM) masses or

restricted movement

o Congenital limb defects

o Orthopedic conditions, such as club feet

MULTI-DISCIPLINARY

EVALUATION OF INFANTS

Neurological Screen

o Abnormal or asymmetrical tone

o Reflexes

o Cranial nerve integrity

o Temperament (irritability, alertness)

o Developmental milestones

o Visual screen (symmetrical eye tracking, visual field

defects, nystagmus)

MULTI-DISCIPLINARY

EVALUATION OF INFANTS

Integumentary Screen

o Skin fold symmetry of hips and cervical region

o Color and condition of the skin

MULTI-DISCIPLINARY

EVALUATION OF INFANTS

Cardiorespiratory Screen

o Symmetrical coloration

o Rib cage expansion

o Clavicle movement

o Cyanosis- bluish discoloration of the skin

o Tachypnea- rapid respiratory rate

o Stridor- high pitched “crowing” sound

o Increased work of breathing (WOB)

MULTI-DISCIPLINARY

EVALUATION OF INFANTS

Gastrointestinal history

o History of reflux or constipation

o Prefers to feed from one side

MULTI-DISCIPLINARY

EVALUATION OF INFANTS

State of Infant- How does the infant respond to stimulus

in their environment- sounds, sights and movement.

How do they respond to handling and care times. State

needs to be assessed throughout the evaluation and

each treatment session.

6 Levels of State

1. Deep Sleep

2. Light Sleep

3. Drowsy or Semi-Drowsy

4. Alert

5. Active

6. Crying

Diagnosis and Effects on

Therapy

• Cardiac and Respiratory Patients present with problems related to:

• Endurance

• Fatigue

• Tone

• State

• Limited oral intake

• Tachypnea/increased work of breathing

• Poor coordination of Suck Swallow Breathe Sequence for non-nutritive suck (NNS) and nutritive suck reflex (NS)

• Poor weight gain

• Aspiration

Diagnosis and Effects on

Therapy (cont.)

Neurological Patients present with problems related to:

State

Endurance

Fatigue

Tone

Movement/Organization

Aspiration

Coordination of suck swallow breathe sequence

for non-nutritive suck (NNS) and nutritive suck

(NS)

Diagnosis and Effects on

Therapy (cont.)

Patients with digestive tract disorders present with problems related to:

State

Tone

Movement/Organization

Endurance

Food Refusal

Extended feeding periods

Constipation

Vomiting

Aspiration

How do we recognize these

problems in infants?

Infant communication

Infant Communication

Signs of Stability

Typical behaviors:

Smooth, regular respirations

Hands actively near face, with good, consistent postural control throughout body

Organized, calm, and with optimal color

Focused, clear alertness- alert state

Smooth state transition

Good coordination of sucking, swallowing and breathing on a pacifier- Non Nutritive suck (NNS)

(Shaker, 1999)

Infant Communication:

Stress Cues

Signs of Stress Gaze Aversion

Furrowed Brow

Raised eye brows

Arms /legs in extension

Finger/toe splays

Arching

Increase in tone

“Shutting down”

Irregular respirations

Video

Preterm Infant –

What to Expect?

Preterm Infant

Typical Motor Characteristics

Decreased flexor muscle tone

Decreased typical flexion contractures/posture

Decreased anti-gravity movements

Decreased midline movements

Primitive reflexes, including Moro and palmar grasp

May be absent

May persist longer that the full-term infant

Preterm Infant

Typical Motor Characteristics

• Tone not developed- Lower extremity tone develops 33-35 weeks

- Upper extremity tone develops 35-37 weeks

- Influenced by cramped intrauterine environment

• Muscle fiber differentiation by 20 weeks- Higher ratio of fast-twitch fibers

• Prevention of nursery-acquired deformities

Preterm Infant

Typical Motor Characteristics

• Prevention of nursery-acquired deformities

General Progression/What to Expect?

Flexor Tone

Improves as preterm baby approaches 40 weeks gestation

Generally does not reach the full degree of flexor tone present

in a term infant

Predominance of extensor tone with tendency for neck

hyperextension

General Progression/What to Expect?

Isolated Delay or Single Abnormal Sign

Does not always indicate that a child has a significant problem

These infants tend to grow and develop at different rates

Should be closely monitored

Jittery Movement Quality

May improve or resolve with time

Should be closely monitored

General Progression/What to Expect?

Delays in Head and Trunk Control

May be due to lengthy immobilization due to medical

complications

Can also be due to compromised respiratory or cardiac status

May resolve as infants medical condition improves

Should be closely monitored

Test of infant motor performance (TIMP)o Identify infants with motor delay from 34 weeks PCA through 4 months GA or CA

o Self-instructional program available from IMPS, LLC

o www.thetimp.com

o Selective control

o Midline alignment

o Quality of movement (fidgety, ballistic, oscillating)

o Elicited items

o Postural control

Anti-gravity

Organized synergies

In functional context

Elicited by natural handling

Predict 12 month motor performance

90 day TIMP score most sensitive for predicting future performance with the PDMS-2

General Progression/What to Expect?

Video- Pathways.org (6 minutes)

https://pathways.org/watch/2-month-old-

baby-typical-and-atypical-development/

Other videos available up to 1 year old

Handouts and other information available

General Progression/What to Expect?

Red flags include

Consistent and persistent movement asymmetries

More than typical hypotonia without explanation

Hypertonia

Lack or very slow rate of progression

Guiding Principals of Treatment

Individualized support

Support the infant/child where they are

Support emerging skills

Carefully watch response to interventions to ensure tolerance

and a positive experience

Support the caregivers where they are

Are they ready for action, or just beginning to process their

child’s needs?

What can they do at this time and what are the obstacles?

What we wish every new parent knew

Infant cues

Plagiocephaly and Torticollis Prevention

Prone time benefits

Movement stimulation

Plagiocephaly and torticollis

prevention

• Plagiocephaly is a flattening of one side of the back of the head and

contralateral forehead

• Torticollis is tightness of the SCM on one side of the neck causing a tilt of

the head to one side and/or rotation of the head to the opposite side

• Can affect vision and motor skill development

• Many cases can be prevented with education

Increased incidence due to time spent on back for safe sleep

Premature infants at greater risk due to low tone and movement asymmetry

Positional plagiocephaly may increase risk for torticollis

Plagiocephaly and torticollis

prevention

Torticollis

Plagiocephaly and torticollis

prevention

Plagiocephaly and torticollis

prevention

Screen each infant

Early treatment improves outcomes

Torticollis and head shape in NICU

Prone positioning when extremely premature

Positioning due to medical interventions

Environmental factors (bed position, care side)

Feeding positions

**If patient is being seen by SLP for feeding, check with

SLP before making any feeding position

recommendations**

Reflux may lead to R rotation preference

Usually minimal loss of PROM

May have strong preference for AROM

Initially start with stretching and/or positioning program

If ROM and repositioning ineffective, may use Tortle

Tortle Midliner

Designed for premature babies

Adjustable, soft beanie, designed with two support rolls made of

polyurethane foam

Velcro front opening to minimize infant handling and help reduce

stress

Highly compatible with attachments, including: CPAP, nasal

cannulas, feeding tubes, and more

Head circumference from 24-38 cm

https://tortle.com/medical/tortle-midliner

Tortle Midliner

Tortle Midliner

Tortle Air

Lightweight beanie with a single support roll

The Tortle Air’s single support roll

Velcro front opening to minimize infant handling and help reduce stress,

as well as elastic side tabs to ensure a proper fit.

Positioning aid to assist with proper head repositioning, which helps to

prevent and manage cranial asymmetry and head preference issues.

Do not use during unsupervised sleep or in car

Used for infants up to 9 Kg

www.tortle.com

Tortle Air

https://www.tortle.com/pages/how-to-properly-wear-tortle

Plagiocephaly and torticollis

prevention

Back to sleep

Head at opposite end of the crib each night

Turn baby’s head to the opposite side each night

Alternate the arm you hold baby in for feeding

Carry baby on alternating sides

Play with your baby in the middle and then to each side, encouraging

head turning

Build tummy time in a variety of ways

Limit time in carriers and car seats

Plagiocephaly and torticollis

prevention

Excellent parent handout

Incorporates tummy time and prevention of

plagiocephaly and torticollis

https://www.choa.org/~/media/files/Childrens/medica

l-services/orthopaedics/orthotics-and-

prosthetics/tummy-time-tools-update-2014.pdf?la=en

Torticollis – Other Considerations

o Hip dysplasia

o Scoliosis

o Clavicle fx

o Brachial plexus injury

o Congenital and/or genetic conditions

o Skull and/or facial asymmetry

o Atypical presentations, such as tilt and turn to the same side

o Abnormal tone

o Late onset torticollis at 6 months or older

o Visual abnormalities

o History of acute onset (trauma or acute illness)

More of what we wish every

parent knew….

Movement and Development

Movement stimulation

Role of OT and PT in infant population

Therapists generally receive little training in the role of

the vestibular system- it may be overlooked

How does movement stimulation impact development?

How does movement stimulation

impact development?

All of the movement in utero and after birth facilitates

a baby’s development – physical, visual, intellectual.

A baby needs movement to learn in order to self soothe,

move, communicate, learn

We derive our physical abilities through all types of

movement. We have to know where we are in space in

order to know where everything else is.

We learn to identify and manipulate and change as well

as recall what we identified.

Take a moment

How many times do you move in a minute?

Our bodies need movement at any age to

Keep us awake

Be on guard

Physically fit

Aware of our surroundings

Mentally alert

As Mom moves

Baby moves in amniotic fluid

Movements are reflexive to build future skills

Enhances sensory system development

Prepares baby for birth

Facilitates development through early childhood

Reflexive movements build

future skills

Relation of reflexes and sensory development

Vestibular

Vision

Proprioception/body awareness

Reflexive movements build

future skills

Supported suspension in amniotic fluid

Rhythm – mom’s heartbeat, walking, talking

Sound – exposure through the womb

Visual orientation to changes in light intensity

Heavy work in utero builds muscle tone secondary

to decreased space

Participation in birth process

These exposures are limited in a baby who is

born prematurely

Primitive reflexes

• Help us to move

• Integration of reflexes develop quality of our

movements

• Our reflexes help us to roll over, crawl, creep –

constantly dependent upon baby’s head position in

space

• As reflexes integrate, they allow baby to function with

more mature movement patterns.

• We continue to use the reflexive patterns throughout

life – i.e. pitch a ball,

• Reflexes help us to learn the motor movement and

coordinate the sequence of movements.

After birth• Exposure to movement through external means

• Picked up/carried by caregivers

• Infant swing, car rides, strollers, rocking to sleep

• This movement exposure is limited in a medical

setting

Medical stability and tolerance for handling

On monitors limiting distance from the bed

Nurse caring for multiple babies

Varying parent ability to spend time in NICU

Eventually hierarchy of movement begins with active

movements such as batting with arms, kicking with

legs, rolling, etc.

Movement

• During the first year of life, the baby

learns many motor skills through the

information provided by the tactile,

kinesthetic, and vestibular systems in

response to visual and auditory input

Movement types

Movement can be slow/rhythmical (stroller or swing) or

more unpredictable (hitting a bump while in the

stroller) – both benefit the baby through different

sensory systems in different ways

Movement can benefit development – each sensory

system has a dual function of perceiving and

interpreting sensory awareness and providing precise

discrete sense of detail

Movement system

• Tells infant which way is up and where infant is going

• Tells exactly where we are in space even with ever

changing environment

• Responds to changes at all times in all conditions

• Can impact self regulation, social emotion skills,

confidence and well being

• Internal GPS – inner ear receptors help us to maintain

orientation of head/body during movement and auditory

and visual systems for time/space

Organization of movement

In the NICU and early intervention setting, we focus a

great deal on organization of movement and midline

development

Organization of movement promotes

coordination, orientation to midline

visual attention/tracking of caregivers

sucking on pacifier/bottle

reaching, batting at objects

and then later…supporting self when sitting, using

arms/legs when rolling, list of skills is endless

Midline orientation helps coordinate use of arms

together or individually, encourages grasping, holding

bottle, shaking toys, bringing fingers to mouth

Movement begets movement

Improves ability to learn motor skills, perform accurate

movements, anticipation/timing of motor commands,

fine tuning muscle movements

Motivation to repeat movements that infant finds novel

or enjoyable from the vestibular/kinesthetic feedback

they get

Communication/social

emotional development

Movement helps thinking/communication and builds

confidence and competence

As the movements develop, social and communication

skills also develop

Lack of movement/Lack of

stimulation

Premature delivery

May have extensive hospitalization which limits

opportunities for typical exposure to movement

May be limited in strength, mobility in order to move

themselves, kick, bat at toys

May need more movement opportunities to help develop

these skills

How do we make up for lost

time?

Early treatment

Babies can be referred to OT while in the NICU –

movement programs are initiated

Some babies start with only 3-4 repetitions of movement

Tolerance to movement can be very low when movement is

initiated after

Once home from hospital, movement programs need to

be continued to facilitate development of all systems

(sensory and cognition/communication/perceptual)

Watch baby’s cues

20 minutes in a swing at a time is enough

Movement is good – holding/rocking, swinging

Continued therapy as needed – Early Intervention, Out

patient therapy

FEEDING AND THE

PRETERM INFANT

Feeding is a COMPLEX

DEVELOPMENTAL SKILL that has

to be LEARNED

There is no light bulb suddenly

turning on

PREMATURE INFANT

=

PREMATURE SKILL

Typical Feeding Reflexes

16-17 weeks- swallowing regulates amniotic fluid

25-26 weeks- rooting reflex emerging; sucking reflex

continues to improve

27-28 weeks- beginning of swallow reflex

32 weeks- improved coordination of swallowing; rooting

is complete; gag and non-nutritive suck present

34-35 weeks- coordination & strength to begin bottle

feeding, poor endurance

36 weeks- coordinated nutritive suck

37-38 weeks- suck-swallow reflex like full-term infant

(Miller, Sonies & Macedonia, 2003)

Challenges with

Feeding Bottle feeding is a physiologically challenging activity

for preterm infants

Due to immature brain development

Difficulty in regulating breathing, heart rate etc.

Difficulty in achieving behavioral state organization when presented with stimuli. (Pickler, 2004)

Infant Challenges With Feeding

Highest profile for feeding problems are extremely

preterm- under 28 weeks and extremely low birth

weight under 1000gm

The following diagnosis are at greater risk for feeding

difficulty:

Respiratory

Cardiac

Digestive

Neurological

Craniofacial

(Shaker, 2017)

Reading the infants cues is the first step in providing

developmentally supportive care

Effective feeding is achieved by responding contingently

to the stress signals related to swallowing and breathing

This supports the infant in maintaining or regaining

coordination, facilitates endurance, ensures adequate

intake and promotes safe feedings.

(Shaker, 1999)

Cue based/Infant Driven

Feeding

Detailed medical history

State

Movement Patterns/Tone

Facial symmetry

Pre-Feeding observations- baseline

Respiration

Clear

Stridor

Labored breathing

Supplemental Oxygen

Secretion Management

Tracheostomy

Feeding

Oral motor assessment

Assess oral motor reflexes for root, gag, phasic

bite, tongue protrusion, transverse

tongue/sucking, swallowing

Non- nutritive suck (NNS)

Very high ratio or 6/8:1 (suck: swallow)

2 sucks per second

Stable pattern of bursts and pauses

(Wolf & Glass , 1992)

Feeding

Nutritive Suck Reflex (NS)

1:1 suck:swallow ratio in young infants

2/3:1 suck swallow ratio in older infant

One suck per second

Initial continuous suck bursts moving to shorter

bursts and longer pauses as feeding progresses (Wolf

& Glass, 1992)

Feeding Observations

Readiness to feed

Oral motor skill

Overall stability

Infant communication

Signs of Stability

When the preterm infant is coordinating sucking, swallowing, and breathing his behaviors reflect self-regulation.

Typical behaviors of an infant nippling well:

Smooth, regular respirations (minimal to no increase in respiratory effort beyond pre-feeding baseline)

Hands actively near face, with good, consistent postural control throughout body

Organized, calm, and with optimal color (little to no change in color from pre-feeding baseline)

Focused, clear alertness

Good coordination of sucking, swallowing and breathing

(Shaker, 1999)

Signs of Stability

Although an infant may reflect signs of self-regulation when he begins a nipple feeding, it is often difficult to maintain self-regulation with the ongoing effort required.

Careful attention to the infant’s behaviors can facilitate early recognition of emerging stress. The feeder can then promote and sustain stability and self-regulation, intervening whenever the infant shows, through his behaviors, that he is losing stability and can not self regulate.

(Shaker, 2013)

Signs of Stress

The following behaviors, which reflect disruption of

the suck-swallow-breathe synchrony are signs of

stress during nipple feeding:

Color change

Breathing

Swallowing

Change in state

Behavioral Stress Signs

(Shaker, 1999)

Signs of Stress-

Color Change

1. Color change

– earliest stress signal

– may be subtle

– indicates a decline in oxygen

– infant feeds too quickly and takes shallow breaths

– Sudden color change may be infant holding breath to

protect airway

– (Shaker, 1999)

Signs of Stress-

Breathing

2. Breathing

Respiratory fatigue

Tachypnea – rapid breathing

Nasal flaring and/or blanching

Chin tugging /head bobbing

Reliance on shallow “catch” breaths

High-pitched “crowing” sounds- Stridor

(Shaker, 1999)

Signs of stress

Swallowing

3. Swallowing Drooling – formula spilling out of the mouth

Gulping

Gurgling sounds in the pharynx- wet vocal

quality

Swallowing several times in succession

Coughing or choking

(Shaker, 1999)

Signs of Stress-

Change in State of Alertness

4. Change in state of alertness:

A quiet alert state is optimal for feeding- the infant is best able to focus on the feeding task and display vigor and rooting. As a result, the muscle movements required for feeding are more likely to be organized and timely.

A subtle change in state may be the first sign that the infant is losing control. Ex: A calm infant that starts to become fussy may be a fussy baby. However, increasing fussiness may be a sign of stress due to demands of feeding.

(Shaker, 1999)

Signs of Stress

Change in State of Alertness

An infant that gets drowsy and falls asleep may be exhibiting respiratory fatigue related to feeding too fast, inadequate oxygenation, or excessive respiratory effort.

An infant may be drowsy from demands made on him before the feeding such as bath, or waiting for his feeding

Drowsiness may also be his way of controlling the input he receives- this may be him “shutting down”

(Shaker, 1999)

Signs of Stress- Behavioral

Changes in facial expressions- Especially in the eyes

Raised Eye Brows

Furrowed Brow

Wide Eyes

Loss of tone/flexion

Pulling away

Pushing nipple out with tongue or hands

Extremities

Arms move away from midline

Fingers splay

Strategies

Do not feed past the infants “stop signs”:

Pushing the nipple out

No active rooting or sucking

Arching

Shutting down

Irritability

Feeding past the stop signs may cause

aspiration

lead to maladaptive behaviors

long term feeding refusals

Strategies

The following strategies relate directly to facilitating

coordination with bottle feeding and swallowing:

Supporting state regulation

Positioning

Imposed Breaks/Pacing

Bolus Size

Flow Rate

Chin and cheek support

Avoiding prodding

(Shaker, 1999)

Strategies

Supporting State/Regulation:

Patient must be in an optimal state of alertness for feeding. Drowsy/semi-dozing, quiet alert and active state.

The state needs to be maintained throughout the feeding through re-alerting or calming

Repositioning

Burping

Reswaddling

(Shaker, 1999)

Strategies

Positioning-

Modified sidelying position is generally the preferred position for feeding premature infants.

mimics breastfeeding position

Sidelying position with a slightly upright tilt, head higher than feet

more control of the bolus/liquid and decreases risks of choking

Additional Positions

Cradle

Semi Upright in lap-upper body & head 45 degree angle to buttocks

(Shaker, 1999)

Side lying

https://babylink.scot.nhs.uk/FamilyCentredCare/CaringForYourBaby/BottleFeeding/

Pages/HowToBottleFeedYourBaby.aspx

Strategies

Positioning

With positions you want to facilitate a neutral head-neck flexion- chin slightly tilted down

You do not want the head extended or with excessive flexion as this can compromise the airway

Keep head at midline – not to one side

Swaddle and support the infant with a blanket, elbows inside, to promote hands toward midline/center of body and to contain infant

Avoid swaddling arms away from face and do not lose sight of arms and hands as they provide information regarding infants experience and energy level with feeding

(Shaker, 1999)

Strategies

Imposed breaks/pacing – Brief breaks that are offered to help the infant maintain or regain self regulation during nipple feeding.

Tilting the bottle down slightly or removing from mouth and allowing patient to show readiness to resume feeding

Imposed breaks/pacing may be used to provide:

Brief rest

Decrease fatigue

Pace energy expenditure

Provide time to reorganize breathing

Promote deep breathing

Provide time to clear the mouth or throat

Improve bolus control

Slow the infant down when he is gulping (Shaker, 1999)

Strategies

Imposed breaks/pacing-

Infants need to be paced based on cues such as:

Raising eyebrows- typically one of the first signs

that infant needs pacing

Eye widening

Pulling head backward

Abrupt/rapid change in muscle tone

(Shaker, 1999)

Strategies

Bolus size-

Bolus size can have a significant effect on breathing and

swallowing

Too large a bolus can lead to coughing or choking

Bolus size is determined by number of sucks infant

takes in a row

Fewer sucks smaller bolus

Observe number of sucks infant takes before showing

cues of stress then limit suck bursts

(Shaker, 1999)

Strategies

Flow rate

Respiration, feeding ability and swallowing safety are

all affected by flow rate.

High flow nipples may cause coughing or choking due to

loss of bolus control

Higher flow rate makes the coordination of sucking,

swallowing and breathing more challenging.

Ventilation decreases as the liquid flow rate increases-

more time is spent in swallowing and less time is

available for breathing

(Shaker, 1999)

Nipples

Preemie/slow flow

Infant controlled

Term/Regular flow

Less controlled

False- Most babies are ready for this

Remember preterm infant preterm skill

Babies need support to learn this complex skill

Strategies

Chin and cheek support

Used with caution and only when indicated – can increase flow rate

Feeding After Discharge

Coming home is a time of adjustment, learning and

stress for the infant and the family

Challenges /concerns expressed by parents after NICU

discharge

Safety during feeding

Adequate caloric intake

Advancing Feeding

(Thoyre, 2001)

Feeding After Discharge

Preterm infants discharged home frequently have not

achieved fully organized and mature eating skills

Feeding problems are prevalent and are reported by

parents immediately after discharge from the NICU

50% of parents report problematic feeding behaviors

from the toddler years into early childhood in their

former preemies

Growth is typically compromised by potential medical

problems as well as delay in attaining eating skills

(Ross, Browne 2013)

Strategies

CONSISTENCY IS KEY

Babies need similar approaches between caregivers

Parents need to be supported and taught

How to read their infants communication

How to support their baby as they learn to feed

How to progress feeding skills

Appropriate bottles/utensils

Calorie boosting

Positioning and seating devices

Successful Feeding

When following a cue based/ infant guided approach:

INTAKE WILL IMPROVE WITH DEVELOPMENT

Listen to the families and how they feel their baby is doing with feeding

Support the family and help them understand how to teach their babies to feed

Requires GOOD COMMUNICATION with team and families

Summary

Thorough medical history from birth and NICU

Understanding the plan from the NICU therapy team

All specialists they are scheduled to see after discharge

Establishing a team outside of the NICU to include those

specialists

Parent/caregiver

Primary Care Physician

Specialists – Neurology, Pulmonology, Cardiology,

Ophthalmology, ENT, GI, Orthopedic, Audiology, Therapy,

Dietician, Lactation Consultant, Case Manager, Counselors

Understanding developmental milestones for corrected

age

Summary

Understanding infant communication/cues

Supporting and educating families in the understanding

infant communication and cues

Supporting and educating families in developmental

milestones based on corrected age

Supporting the family wherever they are in their

journey

Resources

Websites

Pathways.org

thetimp.com

tortle.com

pediatricapta.org/fact-sheets

Feedingmatters.org

shaker4swallowingandfeeding.com

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