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Follow-Up of the High Risk Neonate Robert E. Lyle, M.D. Associate Professor of Pediatrics, Co-Medical Director, ACH NICU Co-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 Discharge Criteria 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 followup, if needed, arranged prior to discharge. 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. Assess fluid intake and calculate calories consumed. 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. 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 followup clinic (ACH High Risk Newborn Clinic) is ideal for assessing and managing infants with difficult growth and nutritional problems. Nutritional Assessment 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. 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 Type of disability None (35-80%) Mild-to-moderate (8-57%) Severe (6-20%) 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 followup 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 BPD Omph/Gastros CDH n 102 35 9 Survival(%) 93(92) 31(88) 7(78) LOS 60 48 50 Charges $25,656,099 $7,207,082 $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 outcomebased clinical process improvement The Council on Children with Disabilities of the American Academy of Pediatrics, 2005 ACH Medical Home Program for Special Needs Children 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 posthemorrhagic 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