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