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Follow-Up of the High Risk Neonate
Robert E. Lyle, M.D.Associate Professor of Pediatrics,
Co-Medical Director, ACH NICUCo-Medical Director, ACH Medical Home
Program
Why Do we Need Specialized High-Risk Newborn Follow-up?
Premature infants and those with complex disorders often require special treatment during follow-up compared to more mature premature infants.
Many infants with major malformations and therefore special needs are now surviving compared to 20-30 years ago.
The Council on Graduate Medical Education and the American Board of Pediatrics have reduced the time that pediatric residents train in the NICU and consequently, their knowledge about follow-up care of NICU graduates is extremely limited
Discharge Criteria Discharge criteria differ depending on the
infant’s history and diagnoses. In general, the following should apply:
Adequate weight gain of 15-30 g/day over the week prior to discharge
Weight gain should have occurred with infant in an open crib and with maintenance of a normal body temperature
Ability to feed without distress, either orally or by gastrostomy tube and if by mouth should take less than 20 minutes per feed
No significant apneas/desaturations/bradycardias in the week leading up to discharge
No major changes in medications/oxygen/feedings in the week prior to discharge
Ability to pass a car seat test accompanied by parents demonstrating appropriate use of the car seat
Parents have demonstrated competency in providing feeds. Parents must also be competent in drawing up and administration of any medications. Likewise, parents must be able to accurately mix the formula and ideally meet with a nutritionist for instruction in special supplements.
Parents have demonstrated the ability to provide CPR following completion of a CPR class.
If technical devices are needed such as monitors, oxygen etc., parents have been adequately trained and have demonstrated competence in the use of such equipment. All medical equipment required in the home should be in place and working.
Routine metabolic/newborn screening should have been completed and the results made available in the medical record.
Hearing screen should have been completed and follow-up, if needed, arranged prior to discharge.
Vision screening, if needed, should have been completed and follow-up, if needed, arranged prior to discharge.
Discharge Criteria
Discharge Criteria In infants requiring prolonged stays,
administration of age-appropriate immunizations should occur and the parents should receive a record of such immunizations.
If appropriate, administration of palivizumab should occur prior to discharge and follow-up dosing arranged.
An assessment of the home environment should be undertaken and an on-site evaluation of the home may be necessary.
Pre-discharge Planning for Infants Requiring Special Care Needs
Oxygen-dependent infants with bronchopulmonary dysplasia should have stable oxygen saturations measured by pulse oximetry at or above 95% in a stable or reducing flow rate for at least two weeks prior to discharge.
Infants having had bowel resection resulting in short gut syndrome requiring intravenous alimentation at discharge should have follow-up with pediatric gastroenterology and appropriate orders/plans for maintenance of outpatient parenteral nutrition. In addition, parents require instruction in the care of the central venous line as well as signs/symptoms of infection with an emergency plan for follow-up, if needed
NICU Staff Assessment Prior to Discharge
The parents have adequately performed all tasks.
The parents have exhibited minimal stress in caring for their infant.
The parents and the home environment are suitable such that neither neglect nor physical abuse is likely to occur.
Prior to Leaving the Hospital A program of parental support such as home
health nurse visits should be ordered, especially to monitor weight gain
Follow-up with a primary care physician (PCP) scheduled. Ideally direct communication between the discharging physician and PCP should occur prior to discharge and a discharge summary should be sent to the PCP on the day of discharge.
To avoid potential fragmentation of care, discharge on weekends, especially of infants with special needs, should be avoided.
All follow-up appointments with specialists should be made prior to discharge
Follow-up care by the Primary Care Provider (PCP)
The major goals of the pediatrician or family practitioner providing care to an NICU graduate are to:
Provide ongoing assessment of growth and nutritional intake
Deliver preventive care Periodically perform
neurodevelopmental assessments
Growth Assessment Weight, length and head circumference should be plotted on
appropriate growth chart after correcting for the gestational age at birth.
PCP must be alert to signs of growth failure with particular emphasis on head growth as it is a predictor of future outcome.
Certain conditions place infants at risk for growth failure and include:
Bronchopulmonary dysplasia Central nervous system injuries such as severe intraventricular
hemorrhage or birth Asphyxia Congenital heart disease Short-gut syndrome Esophageal/intestinal anomalies Renal disease Inborn errors of metabolism Chromosomal and/or major malformation syndromes
Origins of Growth Failure Must Be Explored
Failure to feed versus failure to thrive? Increased work of breathing? Choking/aspiration due to swallowing dysphagia?
Must ask: “How long does it take for the child to take a bottle?” If feedings routinely take > 20 minutes may need further
evaluation for swallowing dysfunction Some infants have accelerating growth patterns after
discharge and head growth commonly exceeds weight gain and linear growth. (Must still be alert to posthemorrhagic hydrocephalus as a cause for excessive head growth after discharge)
Catch-up growth may not be complete until 2.5 - 3 years of age.
Some small for gestational age infants (SGA) may experience a rapid growth in body mass but a substantial number have little catch-up growth. (May require referral to a pediatric endocrinologist for recombinant growth hormone therapy)
Nutritional Assessment Nutritional assessment begins with a complete history and physical
including anthropometric measures (weight, length, head circumference) and
vital signs. Normal weight gain should average 15 - 40 g/day in the first three to
four months after birth and decline to approximately 5 - 15 g/d by age 12-18 months.
The increase in head circumference should range from 0.7 - 1 cm/wk. Assess fluid intake and calculate calories consumed.
Most premature infants require 110 - 130 kcal/kg/day to grow. To accurately assess intake, a home feeding diary may be helpful. Assess if the parents are making the formula correctly, especially if
supplements are added to achieve greater than 20 calorie / ounce concentrations.
If available, follow-up with a pediatric dietitian and a specialized follow-up clinic (ACH High Risk Newborn Clinic) is ideal for assessing and managing infants with difficult growth and nutritional problems.
If intake is a problem, observation by an occupational therapist trained to recognize feeding problems may be indicated and should have been part of the evaluation prior to discharge.
If not: Cineradiography of the suck and swallow mechanism may be
indicated. Tests to exclude gastroesophageal reflux may be needed. Thickening of feeds may be helpful.
Characteristics of stool passage and the composition of the stools may also be helpful in assessing the adequacy of nutritional intake.
Be alert to signs of malabsorption: Presence of oily, mucoid, explosive or watery stools may
indicate malabsorption. Referral to pediatric gastroenterology is indicated.
Nutritional Assessment
Provision of Preventive Care Provision of preventive care is an
essential part of care by the PCP and consists of the following:
Prevention of infectious diseases through immunization - Palivizumab (ANGELS neonatal guidelines)
Education regarding safety Use of car seat Sleeping position - “Back to sleep”
Evaluations of vision and hearing
Neurodevelopmental Evaluation Should be part of all examinations Assessment of muscle tone and presence of
primitive reflexes Referral for therapies as appropriate Part H of the Individuals with Disabilities Act (IDEA)
mandates early intervention for eligible at risk children from birth to age 3 years.
Reviewed in the AAP statement entitled “Pediatric Services for Infants and Children with Special Health Needs” [RE9318].
Be alert to special problems such as torticollis and plagiocephaly.
Review attainment of milestones corrected for gestational age
Risks of Disability The following is an estimate of the risks of disability in
infants with birth weights less than 1500 g: Incidence of a disability
None (35-80%) Mild-to-moderate (8-57%) Severe (6-20%)
Type of disability Mental retardation (10-20%) Cerebral palsy (5-8%) Blindness (2-11%) Deafness (1-2%)
Psychomotor testing using screening tools such as the Denver II Developmental Screening Test and/or the Bayley Scale of Infant Development are helpful to identify infants at risk
High Risk Newborn and Developmental Follow-Up: Who Needs It?
Birth weight less than 1000 grams Medical history or conditions consisting of one of the following:
Bronchopulmonary dysplasia (O2 requirement at 36 weeks PCA) NEC requiring surgical intervention IVH Grades III, IV and/or PHHC and/or PVL Abnormal neurologic exam at time of discharge and/or
microcephaly Seizures related to IVH or asphyxia Meningitis Hearing and/or vision deficits Persistent pulmonary hypertension of the newborn requiring high
frequency ventilation +/- inhaled nitric oxide Pathologic jaundice requiring exchange transfusion Any patient requiring ECMO Any patient with HIE requiring head cooling therapy Uncomplicated patients weighing less than 1500 grams without
local PCP follow-up available or with significant social issues placing them at high-risk (e.g. drug exposure)
ACH High Risk Newborn Clinic Evaluations performed in the Arkansas
Children’s Hospital High Risk Newborn Clinic are as follows:
Assessment of growth and nutrition (Review by a pediatric dietitian)
Thorough review of interval history, illnesses and medication usage
General physical examination Limited neurodevelopmental evaluation
Mullen Developmental Screen Speech assessment
Assessment of the psychosocial environment Determination of needed interventions and
services with a referral letter back to the PCP
BPD Follow-up Close follow-up is needed
Home health visits/PCP High Risk Newborn Clinic/Pulmonary Clinic
Significant risk of rehospitalization within the first year
“Comprehensive” Follow-up care can reduce life-threatening illnesses and PICU admissions (Broyle et al, JAMA 2000)
Optimize growth and development Cautious weaning of oxygen, follow RVH
Follow-Up of Infants with Bronchopulmonary Dysplasia Bronchopulmonary dysplasia (ANGELS
Neonatal Guideline) Weaning of oxygen should be under the supervision
of a high-risk neonatal follow-up program and/or a pulmonologist.
For those infants receiving diuretics, periodic evaluation of electrolyte status is indicated.
Infants with BPD may require 120-150 kcal/kg/day for weight gain.
Follow-up EKGs to assess resolution of RVH may be needed
For those on extended oxygen therapy, a sleep study may be indicated
NEC/Short Gut Syndrome Follow-Up Infants having had bowel resection
resulting in short gut syndrome requiring intravenous alimentation at discharge should have follow-up with pediatric gastroenterology and appropriate orders/plans for maintenance of outpatient parenteral nutrition. In addition, parents require instruction in the care of the central venous line as well as signs/symptoms of infection with an emergency plan for follow-up, if needed.
ACH Medical Home Program for Special
Needs Children
Infants and Children with Special Health Care Needs: An Evolving Problem
Increasing percentage of infants being discharged to home on oxygen and other technology with limited follow-up
Increasing survival of infants into childhood with complex medical conditions
High percentage of hospital readmissions CY 2002:25%
Increasing frustration of parents/caregivers and PCPs over fragmented care
Neonates with Complex and Chronic Conditions: 2004
n Survival(%) LOS Charges
BPD 102 93(92) 60 $25,656,099 Omph/Gastros 35 31(88) 48
$7,207,082 CDH 9 7(78) 50 $4,287,903
Benefits of a Medical Home Program for Special Needs Children
Reduced hospital admissions Reduced length of hospital stay Reduced inpatient charges Reduced emergency department
visits, Improved patient satisfaction Enhanced opportunities for outcome-
based clinical process improvementThe Council on Children with Disabilities of the American Academy of Pediatrics, 2005
Goals of the Program Assist in meeting general healthcare needs Facilitate access to subspecialty care and coordinate
planning and communication of therapies and care plans Enhance communication between medical providers –
ACH inpatient, ACH subspecialists and local primary care providers
Oversee nutritional planning Coordinate developmental, rehabilitative, speech and
psychological evaluations and therapy Provide resources for non-medical needs:
educational/family support/community services
ACH Medical Home Program for Special Needs Children
Target Population Infants and children with complex medical
conditions that require a multitude of subspecialty follow-up care
Magnitude of the Problem CY 2004: 69 children met such criteria Had a total of 180 hospitalizations
Range of 1-8 re-admissions with an average 2.6 8643 patient days Charges in excess of $42 million dollars
ACH Medical Home Program for Special Needs Children
Target Population Infants and children with technology dependence
including oxygen and gastrostomy feeding tubes High risk newborns including those diagnosed with:
Moderate – Severe Brochopulmonary dysplasia Severe intraventricular hemorrhage (Gr III/IV) and post-
hemorrhagic hydrocephalus (+/- shunt) Necrotizing enterocolitis with resultant short-gut syndrome Major congenital anomalies such as diaphragmatic hernia Genetic syndromes associated with disabilites Hypoxic-ischemic encephalopathy Neurologic disorders associated with significant developmental
disabilities Children, aged 0-3, surviving serious illness and
injuries with extended PICU stays and resultant long-term morbidity
ACH Medical Home Program for Special Needs Children