ncc pediatrics continuity clinic curriculum: nicu … · ncc pediatrics continuity clinic...

NCC Pediatrics Continuity Clinic Curriculum NICU Follow-up

Goals amp Objectives

bull Know how to manage long term complications of prematuritybull Develop a nutrition plan for a former premature infantbull Counsel parents on what to expect as premature infants get older

Pre-Meeting Preparationbull NICU Follow-Up Medical and Developmental Management Age 0 to 3

Years (NeoReviews 2014)bull NICU Follow-Up Care The Developmental and Advocacy Perspectives

(NeoReviews 2014)

Conference Agenda

bull Review NICU Follow-up Quizbull Complete NICU Follow-up Mega-Case

Extra-Credit bull AAP Policy Statement Age Terminology in the NICU (2004)bull AAP Policy Statement Hospital Discharge of the High-Risk Neonate

(2008)bull 2014 AAP Policy Statement Synagis with 2017-2018 chartbull HealthyChildren Premature Infants (parent reference)

copy Developed by LCDR Theophil Stokes (2014) amp Kari Wagner (2011 update 2017) Formatted by MAJ Jennifer Hepps 2014 C Carr 2017

Please note CarePoint access needed for upcoming Coding (30OCT) and Population Health (27NOV)Login at httpscarepointhealthmil

NICU Follow-up Medical and Developmental ManagementAge 0 to 3 YearsBree Andrews MD MPH

Matthew Pellerite MD

MPHdagger Patrick Myers

MDDagger and Joseph R

Hageman MDx

Author Disclosure

Drs Andrews Pellerite

Myers and Hageman

have disclosed no

financial relationships

relevant to this article

This commentary does

contain a discussion of

an unapproved

investigative use of

a commercial product

device

Educational Gaps

1 Despite understanding the problems associated with the progression of a variety of diseases

in the neonatal intensive care unit (NICU) less is known about the course of common NICU

diseases after discharge

2 The management of NICU graduates requires complicated social medical and

subspecialty coordination

AbstractOver the last several decades the number of infants graduating neonatal intensive care units(NICUs) continues to increase despite advances in obstetrical practice Many of these NICUgraduates have complexmedical social developmental andmedicinal needs that require a phy-sician dedicated to providing a NICU follow-up medical home The object of the present re-view is to address the epidemiology and management of common problems that occur in theat-risk NICU graduate

Objectives After completing this article readers should be able to

1 Appreciate the epidemiology of common neonatal intensive care unit (NICU) diseases

in the outpatient setting

2 Describe the management and progression of common problems that affect the NICU

graduate

3 Understand the complexity and pitfalls of care of the NICU graduate

IntroductionThere are w4 million live births in the United States each year w400000 of which arepremature (1) Over the last few decades there has continued to be both an increase in

preterm births and a decrease in preterm mortality (2)which has led to the growth of academic and communityneonatal intensive care unit (NICU) programs dedicatedto medical and developmental follow-up of these infants

These successes are associated with complex medical anddevelopmental outcomes Post-NICU care has a unique andcomplex set of social cultural geographic and economic in-teractions NICU follow-up experts general pediatriciansfamily practitioners and an array of subspecialists now carefor former NICU patients in a myriad of settings

The goal of the present article was to guide practitionersin approaches to common NICU-related medical and devel-opmental management according to body system and sub-specialty Within each medical approach particular attentionis paid to long-term disease prevention and cost savings forthe benefit of both patients and clinicians

Abbreviations

AAP American Academy of PediatricsBPD bronchopulmonary dysplasiaCT computed tomographicECMO extracorporeal membrane oxygenationGERD gastroesophageal reflux diseaseIVH intraventricular hemorrhagePPV positive pressure ventilationPVL periventricular leukomalaciaROP retinopathy of prematurityRVH right ventricular hypertrophyVP ventriculoperitoneal

Associate Professor of Pediatrics Pritzker School of Medicine University of Chicago Attending Neonatologist Comer Childrenrsquos

Hospital Chicago ILdaggerFellow in Neonatology Comer Childrenrsquos Hospital Pritzker School of Medicine University of Chicago Chicago ILDaggerAttending Neonatologist Clinical Associate Pritzker School of Medicine University of Chicago Chicago ILxSenior Clinician Educator Pritzker School of Medicine University of Chicago Chicago IL and Emeritus Attending Pediatrician

NorthShore University HealthSystem Evanston IL

Article developmentalbehavioral issues

NeoReviews Vol15 No4 April 2014 e123

by guest on October 15 2017httpneoreviewsaappublicationsorgDownloaded from

Home Oxygen UseThe most common lung disease related to prematurity isbronchopulmonary dysplasia (BPD) which occurs inw42 of former 22- to 28-week gestation infants whosurvive to 36 weeksrsquo postmenstrual age (3) Both the rateand severity of BPD increase with decreasing gestationalage BPD is currently defined as the use of oxygen or sup-plemental positive pressure at 36 weeksrsquo adjusted age (4)

Further classification of BPD severity can be assessed byusing the scale of Jobe and Bancalari that includes detailedassessment of positive pressure and oxygen use in theNICU(4) Infants born lt32 weeksrsquo gestation who required lessthan 3 weeks of supplemental oxygen and less than 8 daysof ventilation (mild BPD) are considered lowest risk for post-discharge complications of BPD Those who required up to4 to 6 weeks of ventilationcontinuous positive airway pres-surehigh-flow nasal cannula and 6 to 10 weeks of supple-mental oxygen have moderate BPD Any child who requiresmore than 90 days of ventilation is considered to have severeBPD and to be at high risk for readmission and for increasedmorbidity and mortality from BPD

In infants with severe BPD typical home oxygen use is01 to 05 Lmin of oxygen to maintain oxygen saturationlevels of Dagger95 to 98 Any former premature infant who re-quires more than 05 Lmin of oxygen or who takes a vaso-active medication such as sildenafil or bosentan is consideredto be at high risk for right ventricular heart dysfunction andpoor improvement from pulmonary disease Home oxygenuse of more than 05 Lmin also creates logistic difficultiesfor families due to the inability to transport sufficient oxygento perform daily activities of life Infants who have BPD arealso more likely than their peers to be rehospitalized in gen-eral and with a respiratory illness specifically (5)

Postdischarge diuretic use varies substantially acrosspractices For a child discharged from the hospital withdiuretics correct dosing should be reviewed with the par-ent at the first visit to the clinic If a child remains ontwice-daily dosing of any diuretic for 1 month after dis-charge a complete metabolic panel is recommended atthe end of the first month or earlier if there is a concernregarding other electrolyte abnormalities

Typical strategies for BPDmanagement include a step-wise weaning of diuretic therapy and oxygen therapy Di-uretics are initially weaned to once-daily dosing and thendiscontinued Daytime oxygen therapy is weaned by 01Lmin per month until it is discontinued Nighttimeweaning of oxygen therapy then occurs in a similar fash-ion Continuous pulse oximetry is used before any wean-ing occurs and can be modified to spot-checks during thedaytime when weaning day oxygen and discontinuingnight pulse oximetry when night oxygen is discontinued

The weaning of oxygen in settings such as profound respi-ratory failure anatomic pulmonary disorders cardiac diseaseor postndashextracorporeal membrane oxygenation (ECMO)-related pulmonary hypertension (15 of post-ECMO in-fants have chronic lung disease) (6) may be guided by im-aging studies echocardiogram or cardiac catheterization

The ongoing use of home oxygen therapy is typicallyguaranteed through the Durable Medical Equipmentcontract and paid for by the childrsquos insurance Vigilancein the documentation and periodic review of new medicalorders is important when using home oxygen therapy andpulse oximetry monitoring because the interruption ofoxygen therapy can be catastrophic

Before discharge infants leaving on oxygen therapyshould have an echocardiogram to evaluate for right ven-tricular hypertrophy (RVH) Infants found to have RVHand on home oxygen therapy andor on a vasoactivemedication such as sildenafil or bosentan may need tohave higher oxygen saturation levels in the outpatient set-ting If there is an inability to wean either oxygen therapyor diuretics in the first 3 to 6 months after discharge a re-peat echocardiogram is ordered to evaluate for progres-sion of RVH Infants who have both BPD and RVHrepresent an especially high-risk group and should be co-managed with pediatric cardiology andor pulmonology

Tracheostomy and Positive PressureVentilationTracheostomies and the need for positive pressure ventila-tion (PPV) are uncommon in the NICU population withone study reporting that w2 of preterm infants requiredtracheostomy (7) while another showed an increasing rateof 477 per 100000 live births needed PPV (8) Infantswho have congenital airway abnormalities have a greaterneed for tracheostomy with that need ranging from 10to 14 (7) Almost all infants (97) discharged from thehospital needing PPV are weaned off PPV by their fifthbirthday themedian time of weaning off PPV is 2 years (8)

Due to the high rate of readmission and death in formerNICU patients who have tracheostomies (8) home nurs-ing staff and family members should be taught the replace-ment of tracheostomy tubes and to observe for signs ofobstruction displacement and infection Any signs of dis-tress within this patient population should trigger evalua-tion with the physicians in the emergency department orsubspecialists involved in the patientsrsquo care while offeringstabilization procedures such as the placement of an intra-venous catheter supplemental oxygen therapy and respira-tory flow as well as routine blood and imaging evaluations

Genetic syndromes and craniofacial abnormalities mayalso necessitate the need for home oxygen therapy

developmentalbehavioral issues nicu follow-up to age 3 years

e124 NeoReviews Vol15 No4 April 2014


tracheostomy and home ventilation In obstructive andcentral sleep apnea syndromes sleep pulmonologists of-ten guide early therapy In simple obstructive sleep apneacases in the older child first-line medical therapy withmontelukast (9) andor fluticasone can be offered beforesurgical management

ApneaThere are practice variations for the use of apnea moni-tors at discharge of premature infants (10) When apneamonitors are used they can be discontinued any time af-ter 44 weeksrsquo corrected age because preterm infants withapnea are at the same risk as other infants at this age (11)After an apneic event the readings of apnea monitors arenot as helpful as a full evaluation in the emergency de-partment urgent care or primary care office (12) Trueapnea can be related to a consequence of immaturitypoor neurologic function seizures feedinggastro-esophageal reflux disease (GERD) or control of secre-tions Both typical apnea and complicated apneashould be treated seriously (13) and a cause should besought One method of avoiding the uncertainty regard-ing apnea of prematurity is to develop a protocol in whichpremature patients are weaned from caffeine citrate atleast 3 to 5 days before discharge allowing for an obser-vation period off caffeine based on gestational age (14)

ImmunizationsA common pitfall when treating NICU graduates is de-laying or withholding vital immunizations in a popula-tion particularly vulnerable to respiratory diseases TheAmerican Academy of Pediatrics (AAP) guidelines pro-vide guidance on immunization practice for pretermand low birth weight infants with full doses of diphtheriaand tetanus toxoids with acellular pertussis vaccine(DTaP) Haemophilus influenzae type b hepatitis B po-liovirus and pneumococcal conjugate vaccines given atthe chronological age equivalent to that recommendedfor term infants (15) Influenza prophylaxis should be of-fered to all NICU infants at 6 months of age and theircaregivers before or during the influenza season

The need for palivizumab (Synagis MedImmuneLLC Gaithersburg MD) should be evaluated in all pa-tients with lung pathology related to prematurity (pound36weeks) and other at-risk NICU graduates The AAPguidelines also provide guidance on the number of treat-ments (3 vs 5) the annual start date is based on geographiclocation and eligibility (16) Home-based services stream-lined ordering and delivery procedures are often availableto families

Anemia of Prematurity and Anemia of Chronicor Complex DiseaseAnemia of prematurity is common in the NICU but isless common in the outpatient setting because the mostsevere cases are treated with blood transfusion or erythro-poietin before NICU discharge Counterintuitively manyinfants born at 29 to 34 weeksrsquo gestationmay go on to havepersistent anemia because they did not undergo transfusionin the NICU were subject to phlebotomy did not receiveadequate iron supplementation after discharge and havereduced fetal blood cell life span (17)

Many centers are comfortable discharging from thehospital a patient who has a hemoglobin level Dagger80 gdL and a reticulocyte count Dagger3 to 4 Our practice isto have children who are discharged with a hemoglobinlevel pound95 gdL have a repeat complete blood count inthe outpatient setting 2 weeks after discharge and 1 to2 months later as long as the blood counts are increasing

Anemia is also common in infants who have complexcongenital syndromes who require multiple surgeriesThe neonatal follow-up physician can help coordinateongoing surgical interventions by ensuring normal bloodcounts before surgery

Iron therapy is typically adequate for asymptomaticanemia related to NICU care The appropriate doserange is 2 to 6 mgkg per day of elemental iron For al-most all infants discharged weighing less than 35 kg1 mL of a polyvitamin with iron which contains 10 mgof elemental iron is sufficient and is simple enough to en-sure good compliance Infants fed human milk should re-ceive additional iron and vitamin D supplementation

Seizures in the NewbornSeizures occur in w01 of all newborns (18) but arecommon in the NICU As many as 10 of infants whohave intraventricular hemorrhage (IVH) (19) w18 ofinfants who have periventricular leukomalacia (PVL)(20) and 29 to 35 of infants who have moderate or se-vere hypoxic-ischemic encephalopathy (21) will have sei-zures Many congenital anomalies are also associated withbrain malformations and dysfunction leading to seizure

The most important aspect of seizure management forthe generalist is a complete understanding of the plan atthe time of discharge Many infants who require anticon-vulsant therapy in the NICU have conditions that im-prove (22) and where subsequent weaning is plannedwith no planned escalation of dose or therapy Other sei-zure disorders are known to be complex or persistent innature and the clinician should be alert for new clinicalmanifestations




Currently phenobarbital is the first-line treatment formaintenance therapy of seizures in newborns (22) Com-plex or persistent phenotypes can be managed withlevetiracetam fosphenytoin or divalproex and the assis-tance of a pediatric neurologist Withdrawal of antiepilep-tic therapy should be guided by the neurology team withthe goal of limiting maintenance therapy to weeks ormonths if possible If a level needs to be maintained forany of the anticonvulsants the blood levels should bedrawn within a month of discharge and an arrangementshould be made with the neurologist regarding subsequentblood draws and the transfer of results between clinicians

Neuroimaging in the form of an electroencephalo-gram computed tomographic (CT) scan and magneticresonance imaging can be an important aspect of ongoingseizure care Before discharge the primary care physicianshould assess the need and frequency for this imaging anddetermine a plan for referral or ordering of these testsOftentimes a prolonged electroencephalogram for 24hours requires a specialized hospital facility and magneticresonance imaging or a CT scan might require sedationand a sedation team or service These ancillary servicescan require intensive planning for the general physician

Intraventricular Hemorrhage PeriventricularLeukomalacia and Ischemic and HemorrhagicStrokeVery preterm infants known to have IVH or PVL havea higher rate of cerebral palsy Infants who have bilateralcystic PVL have cerebral palsy rates as high as 75 buteven with a normal head ultrasound w4 of infants lessthan 32 weeksrsquo gestational age develop cerebral palsy(23) Every NICU team should have a plan for develop-mental follow-up for its high-risk graduates

Approximately 16 of infants with severe IVH (gradeIII and IV) require permanent ventriculoperitoneal (VP)shunts with about one-third of those infants requiringa VP shunt after discharge from the NICU (24) Thefollow-up team should involve the primary care physicianand the neurosurgical teams Monitoring head circumfer-ence is very important lack of head growth is equally asworrisome as increased growth The caregivers of infantswho have VP shunts should be taught to evaluate forshunt malfunction obstruction and signs of increased in-tracranial pressure infection and the need for urgentphysician evaluation if concerned

Ischemic and hemorrhagic strokes occur as vascularaccidents related to hypoxic-ischemic encephalopathycomplications of ECMO clotting disorders or tumorsAn initial evaluation often occurring in the NICU

consists of laboratory draws for proteins C and S factorV Leiden homocysteine deficiency and antithrombin IIIdeficiency Some of these levels are difficult to interpretduring illness and during the newborn period These pa-tients are often referred to subspecialty hematology afterdischarge for a repeat of these studies

Retinopathy of Prematurity MyopiaAmblyopia and EsotropiaExotropiaThe incidence of retinopathy of prematurity (ROP) in-creases as gestational age and birthweight decrease Re-cent studies estimate the rate of severe ROP at 20 to30 in those infants born at pound24 weeksrsquo gestation (3)Overall the incidence of severe ROP for 24- to28-weeksrsquo-gestation premature infants is w7 (3)(25)Despite the incidence the need for invasive therapy is rel-atively low In a recent analysis only 77 of those infantsdiagnosed with ROP required laser surgery and 025 re-quired scleral buckle or pars plana vitrectomy (25)

In the outpatient setting the most important aspect ofongoing care is an understanding of the urgency of thefirst ROP follow-up appointment especially when thestate of the retina is uncertain or the infant has receivedROP treatment In cases in which timely follow-up isneeded there are retinal clinics that file with the state De-partment of Children and Family Services when familiesfail to make these appointments However if the firstfollow-up examination is less urgent (generally 3ndash6months after discharge) assisting the families with timelyreminders and referrals continues to be important

Premature infants without ROP are still at risk forother ophthalmologic issues such as loss of visual acuityerrors of refraction and strabismus After 12 monthsrsquoadjusted age every infant born at pound32 weeksrsquo gestationalage is sent for a formal ophthalmology examination witha general ophthalmologist They can help determinethe need for patching glasses and corrective musclesurgery

For children who have complex vision problems (in-cluding partial blindness severe myopia and nystagmus)the child should be evaluated by a vision therapist and re-ferred for vision therapy both of which can help in thedevelopmental rehabilitation of the infant Many com-munity organizations such as Lighthouse Internationalcan help with locating providers and services

Hearing LossHearing loss occurs in 07 to 15 of NICU graduates(26) for reasons related to long-term ventilation amino-glycoside use ECMO hyperbilirubinemia central nervous




system infection or dysfunction craniofacial abnormali-ties and diuretic therapy

A screening automated brainstem response test or anotoacoustic emissions test should be performed at NICUdischarge because infants who receive therapy have im-proved language skills school performance and occupa-tional performance Any referred infant should be sent(through the state universal hearing referral system) toa pediatric otolaryngologist Attentive follow-up is nec-essary for any infant who fails hearing screening exami-nations Many of these children will require sedatedscreening testing temporal bone CT studies tympanos-tomy tubes and amplified hearing assistance Profounddeafness is uncommon but when it is identified co-chlear implantation is a possibility and early referral isimportant

Among high-risk infants even when a normal hearingscreen is obtained at the time of discharge common prac-tice is to rescreen high-risk infants every 6 months untilthe age of 3 years Factors associated with high risk in-clude very low birth weight NICU hospitalization formore than 5 days ECMO course mechanical ventilationexposure to ototoxic medications (ie loop diureticsaminoglycosides) hyperbilirubinemia that required ex-change transfusion TORCH (toxoplasmosis other in-fections rubella cytomegalovirus infection and herpessimplex) infections craniofacial anomalies around theear congenital syndromes associated with hearing loss(eg Usher Alport Pendred Hunter Stickler) andculture-positive meningitis (27)

Gastroesophageal Reflux Disease andDysphagiaAbout one-half of all infants have at least 1 episode of regur-gitation per day reported in the first 3 months after birth(28) Preterm NICU graduates and infants who have neuro-logic impairment BPD or esophageal atresia are at higherrisk for GERD (29) Treatment should be considered whena child continues to have spitting up back arching and tightshoulder posture that impedes feeding volumes makingweight gain difficult or increasing irritability

Recent AAP guidelines emphasize lifestyle modifica-tion as the starting point for GERD management (30)Because milk protein allergy can mimic GERD switchingto a hydrolyzed protein formula or having breastfeedingmothers exclude milk and egg from their diet can bea good starting point Thickening feeds with 1 table-spoon of rice cereal per ounce of formula can also be con-sidered in healthy infants corrected past their due dateAlthough thickened feedings are common practice the

generalist should be aware that in preterm infants therehas been concern regarding an association between thick-ened feeds and necrotizing enterocolitis (31) Familiesshould be reminded that prone or side-lying positioningis not recommended in sleeping or unobserved infants (30)

Medical therapy for GERD should be approachedcautiously on both an inpatient and outpatient basis forpremature infants Neonatologists are growing cautiouswith inpatient treatment of reflux-related events Outpa-tient practitioners can evaluate the risks and benefits oftreatment in conjunction with consultation with gastro-intestinal specialists

Dysphagia is prominent among patients with complexconditions In addition to ongoing feeding supportsthrough speech therapy patients often have supplemen-tal nasogastric tube or gastrostomy tube feeding Thetiming and removal of gastrostomy tubes is complicatedA stepwise approach is needed and starts with a feedingspecialistrsquos evaluation which indicates that the infant isready to try oral feeding An oral-pharyngeal motility testis then used to determine if the infant is aspirating liquidIf results of the test indicate that it is safe feeds are thenslowly advanced

Parent comfort understanding and compliance are keyelements in the arena of dysphagia and gastrostomy tubemanagement Education is needed to teach parents aboutgranulomas the need to change the gastrostomy tubeabout every 3 months gastrostomy tube leaks and whatto do when the gastrostomy tube is accidently dislodged

Parenteral NutritionndashAssociated Liver DiseaseParenteral nutritionndashassociated liver disease is defined asan elevated conjugated bilirubinemia level (Dagger20 mgdL)that reflects liver dysfunction related to parenteral nutri-tion Infants at the highest risk for this disease are thoseless than 750 g birthweight and those who have gastro-schisis or jejunal atresia (33) Once parenteral nutrition isstopped both the conjugated bilirubin and alanine ami-notransferase levels will slowly normalize If the infantwas discharged from the hospital on ursodiol it is discon-tinued with the normalization of these laboratory valuestypically within 2 to 3 months

OsteopeniaOsteopenia of prematurity is related to both low gesta-tional age and prolonged need for intravenous nutritionSome studies report pathologic fractures inw30 of pre-term infants with osteopenia (34) These infants havemany risk factors including nonweight-bearing long-term ventilation and exposure to furosemide postnatal




steroids and antibiotics Typical preterm NICU gradu-ates have elevated alkaline phosphatase levels with a rangeof 400 to 600 IUL and require vitamin D supplemen-tation The AAP recommends that all breastfed partiallybreastfed or formula-fed infants taking less than 1000mLof vitamin Dndashfortified milk per day should take 400 IU ofvitamin D daily (35) Some sources recommend up to1000 IU for preterm infants In addition for non-breastfed infants the use of a preterm formula providesadditional calcium and phosphorus compared with stan-dard formula

Atypical elevations (alkaline phosphatase more than 650IUL) require the aforementioned supplementation plusoral calcium and phosphorus supplementation Goals for cal-cium supplementation range from 60 to 90 mgkg per dayhowever most infants need 100 to 160 mgkg to reach ad-equate bioavailability The goal of phosphate supplementa-tion is 60 to 90 mgkg per day (34) These regimens aredifficult in terms of preparation in part because of precipi-tation of supplements when added directly to feedings As-sisting families with the schedule preparation and refillingof these prescriptions is important for compliance

Another group of high-risk patients are those whohave prolonged anticonvulsant use The ongoing needfor bone mineralization and maintenance can be over-looked when treating refractory or ongoing seizuresHowever these patients may have the most ongoing dif-ficulties with osteopenia Referral to endocrinology spe-cialists and awareness from the neurology team oftenhelps prevent pathologic fractures

Nutrition and GrowthGrowth in the NICU and follow-up period is a criticalfactor in determining long-term outcomes Poor growthnoticed during follow-up visits should generate suspicionthat medical social or economic factors may be affectingthe infantrsquos health The window for catch-up growth iscritical in the first year of age in particular poor gainsin head circumference in the first 8 months after birth in-dicate poor long-term outcomes (36)

Both the National Health and Nutrition ExaminationSurvey and the World Health Organization growthcharts are reasonable to use for US infants For prematureinfants height weight and head circumference are ad-justed for prematurity until the infant reaches a chrono-logical age of 24 months

For typically developing former premature infantsborn pound28 weeks premature fortified human milk or pre-term infant formula (22 kcaloz) can be used until 12monthsrsquo adjusted age Most commonly a 22-calorie

formula or human milk fortified to 22 kcaloz by usingpreterm infant formula is used but other caloric densitiesmay be needed One common strategy to fortify humanmilk is to use powered preterm formula In uncompli-cated cases at 6 to 9 monthsrsquo adjusted age and with goodgrowth infants are sometimes transitioned to term for-mula especially if cost andor availability are issues Reg-ular parental education regarding the mixing of specializedformulas is important for compliance and safety

Premature formula will provide additional proteincalcium phosphorus zinc vitamins and trace elementswith the goal of providing additional growth A 2012Cochrane collaboration demonstrated that feeding ldquopre-term formulardquo (Dagger80 kcal100 mL and protein enriched20 to 24 g100 mL) was associated with increasedweight length and head circumference at 12 to 18months It is unclear if these gains persist into later lifeor if neurodevelopment is positively affected (37)

Hydrolyzed formulas can be difficult to obtain com-mercially For any surgical or allergy-related complex pro-tein intolerance it is important to have nutritional andsubspecialty supports for switching to hydrolyzed substi-tutes Approximately 50 to 75 of infants who are ona hydrolyzed formula at NICU discharge can be transi-tioned to a term formula at 12 to 24 months of age Be-tween 25 and 50 of these infants require a specializedformula until 2 to 3 years of age

NeurodevelopmentAny high-risk neonate should be referred to early inter-vention or the State 0-3 developmental program at thetime of discharge All NICUs should have a plan for fol-lowing up and aiding an infantrsquos neurodevelopmentalcourse

Many screening tools can be used in the clinic for on-going assessment One simple screening tool is the Agesand Stages Questionnaire screening tool used to inter-view parents about development related to chronologicage The Test of Infant Motor Performance and the Al-berta Infant Motor Scale are often administered by phys-ical therapists in the clinic to assess motor skills TheBayley examination is used to assess motor cognitiveand communication skills and can be administered overa 60-minute period by a trained practitioner The BayleyScreening Tool is a modified shorter version of the sametool that can be administered by many different cliniciansThe most important aspect of NICU follow-up care re-lated to development is having a consistent system thatcan identify suspected delays and trigger referrals fora higher level of developmental service




When developmental therapy is needed equipment isalso often needed Finding appropriate referral sites forplagiocephaly helmets ankle-foot orthotics splinting de-vices bath chairs standers and wheelchairs should be in-vestigated when taking care of patients with complexconditions

Home Visits and Home NursingSeveral studies have shown the benefits of home visits toNICU graduates Meta-analysis indicates that families re-ceiving home visits had an increase in motor disability in-dex and improved interaction between parents and theirinfant (38) Many agencies such as the Adverse Preg-nancy Outcomes Reporting System Early Interventionand the Division of Specialized Care for Children offerhome visits case management social work and nursingsupports to NICU graduates

References1 Martin JA et al Births final data for 2011 NVSR 62(1)90(PHS) 2013ndash11202 Ananth CV Joseph KS Oyelese Y Demissie K Vintzileos AMTrends in preterm birth and perinatal mortality among singletons

United States 1989 through 2000 Obstet Gynecol 2005105(5 pt1)1084ndash10913 Stoll BJ Hansen NI Bell EF et al Eunice Kennedy ShriverNational Institute of Child Health and Human DevelopmentNeonatal Research Network Neonatal outcomes of extremelypreterm infants from the NICHD Neonatal Research NetworkPediatrics 2010126(3)443ndash4564 Jobe AH Bancalari E Bronchopulmonary dysplasia AmJ Respir Crit Care Med 2001163(7)1723ndash17295 Chye JK Gray PH Rehospitalization and growth of infants withbronchopulmonary dysplasia a matched control study J PaediatrChild Health 199531(2)105ndash1116 Glass P Wagner AE Coffman CE Outcome and follow-up ofneonates treated with ECMO In Zwischenberger JB SteinhornRH Bartlett RH eds ECMOmdashExtracorporeal CardiopulmonarySupport in Critical Care Ann Arbor MI Extracorporeal LifeSupport Organization 2000409ndash4207 Kenna MA Reilly JS Stool SE Tracheotomy in the preterminfant Ann Otol Rhinol Laryngol 198796(1 pt 1)68ndash718 Cristea AI Carroll AE Davis SD Swigonski NL AckermanVL Outcomes of children with severe bronchopulmonarydysplasia who were ventilator dependent at home Pediatrics2013132(3)e727ndashe7349 Goldbart AD Goldman JL Veling MC Gozal D Leukotrienemodifier therapy for mild sleep-disordered breathing in childrenAm J Respir Crit Care Med 2005172(3)364ndash37010 Pellerite M Hageman J McEntire B et al Comparison ofneonatal intensive care unit (NICU) discharge (DC) decisionsof neonatal fellowship-based training programs (NFP) NICUswith non-NFP NICUs in the United States Presented at thePediatric Academic Society 2013 Washington DC Abstract292235111 Ramanathan R Corwin MJ Hunt CE et al CollaborativeHome Infant Monitoring Evaluation (CHIME) Study GroupCardiorespiratory events recorded on home monitors comparisonof healthy infants with those at increased risk for SIDS JAMA2001285(17)2199ndash220712 Cocircteacute A Hum C Brouillette RT et al Frequency and timing ofrecurrent events in infants using home cardiorespiratory monitorsJ Pediatr 1998132(5)783ndash78913 Darnall RA Kattwinkel J Nattie C Robinson M Margin ofsafety for discharge after apnea in preterm infants Pediatrics 1997100(5)795ndash80114 Lorch SA Srinivasan L Escobar GJ Epidemiology of apneaand bradycardia resolution in premature infants Pediatrics 2011128(2)e366ndashe37315 Saari TN American Academy of Pediatrics Committee onInfectious Diseases Immunization of preterm and low birth weightinfants Pediatrics 2003112(1 pt 1)193ndash19816 Bocchini JA Bernstein HH Bradley JS et al Committee onInfectious Diseases From the American Academy of Pediatrics pol-icy statementsmdashmodified recommendations for use of palivizumabfor prevention of respiratory syncytial virus infections Pediatrics2009124(6)1694ndash170117 Kaplan E Hsu KS Determination of erythrocyte survival innewborn infants by means of Cr51-labelled erythrocytes Pediatrics196127(3)354ndash36118 Glass HC Pham TN Danielsen B Towner D Glidden D WuYW Antenatal and intrapartum risk factors for seizures in termnewborns a population-based study California 1998-2002J Pediatr 2009154(1)24ndash28e1

American Board of Pediatrics NeonatalndashPerinatalContent Specifications

bull Know the management of apnea ofprematurity

bull Know the management ofbronchopulmonary dysplasiachronic lungdisease

bull Know the immunizations recommended bythe American Academy of Pediatrics and the appropriateschedules for immunizing preterm and term infants

bull Understand the management and prognosis of neonatalseizures

bull Know the approximate risk of cerebral palsy in very lowbirthweight moderately low birthweight and normalbirthweight infants

bull Know the prenatal perinatal and neonatal risk factors for thedevelopment of cerebral palsy

bull Know the types of visual impairments other than retinopathyof prematurity associated with prematurity

bull Know the incidence of bilateral moderate or severesensorineural hearing impairment in high-risk infantsincluding those who have hypoxic-ischemic encephalopathypersistent pulmonary hypertension or congenital infections

bull Know the prenatal perinatal and neonatal risk factors(causes) associated with the development of hearingimpairment

bull Know the indications for the complications of and surgicalmanagement of tracheostomies




19 Strober JB Bienkowski RS Maytal J The incidence of acuteand remote seizures in children with intraventricular hemorrhageClin Pediatr (Phila) 199736(11)643ndash64720 Kohelet D Shochat R Lusky A Reichman B Israel NeonatalNetwork Risk factors for seizures in very low birthweight infants withperiventricular leukomalacia J Child Neurol 200621(11)965ndash97021 Simbruner G Mittal RA Rohlmann F Muche R neonEUROnetwork Trial Participants Systemic hypothermia afterneonatal encephalopathy outcomes of neonEUROnetwork RCTPediatrics 2010126(4)e771ndashe77822 Olson DM Neonatal seizures Neoreviews 201213(4)e213ndashe22323 Ancel PY Livinec F Larroque B et al EPIPAGE StudyGroup Cerebral palsy among very preterm children in relationto gestational age and neonatal ultrasound abnormalities theEPIPAGE cohort study Pediatrics 2006117(3)828ndash83524 Alan N Manjila S Minich N et al Reduced ventricular shuntrate in very preterm infants with severe intraventricular hemorrhagean institutional experience J Neurosurg Pediatr 201210(5)357ndash36425 Lad EM Nguyen TC Morton JM Moshfeghi DM Retinop-athy of prematurity in the United States Br J Ophthalmol 200892(3)320ndash32526 Cristobal R Oghalai JS Hearing loss in children with very lowbirth weight current review of epidemiology and pathophysiologyArch Dis Child Fetal Neonatal Ed 200893(6)F462ndashF46827 Busa J Harrison J Chappell J et al American Academy ofPediatrics Joint Committee on Infant Hearing Year 2007 positionstatement principles and guidelines for early hearing detection andintervention programs Pediatrics 2007120(4)898ndash92128 Nelson SP Chen EH Syniar GM Christoffel KK PediatricPractice Research Group Prevalence of symptoms of gastroesoph-ageal reflux during infancy A pediatric practice-based survey ArchPediatr Adolesc Med 1997151(6)569ndash57229 Hassall E Kerr W El-Serag HB Characteristics of childrenreceiving proton pump inhibitors continuously for up to 11 yearsduration J Pediatr 2007150(3)262ndash267 e1

30 Lightdale JR Gremse DA Heitlinger LA et al Gastroesoph-ageal reflux management guidance for the pediatrician Pediatrics2013131(5)e1684ndashe169531 Clarke P Robinson MJ Thickening milk feeds may causenecrotising enterocolitis Arch Dis Child Fetal Neonatal Ed 200489(3)F28032 Moore DJ Tao BS Lines DR Hirte C Heddle ML DavidsonGP Double-blind placebo-controlled trial of omeprazole in irrita-ble infants with gastroesophageal reflux J Pediatr 2003143(2)219ndash22333 Christensen RD Henry E Wiedmeier SE Burnett J LambertDK Identifying patients on the first day of life at high-risk ofdeveloping parenteral nutrition-associated liver disease J Perinatol200727(5)284ndash29034 Vachharajani AJ Mathur AM Rao R Metabolic bone diseaseof prematurity Neoreviews 200910(8)e402ndashe41135 Wagner CL Greer FR American Academy of PediatricsSection on Breastfeeding American Academy of Pediatrics Com-mittee on Nutrition Prevention of rickets and vitamin D deficiencyin infants children and adolescents Pediatrics 2008122(5)1142ndash115236 Viswanathan S Khasawneh W McNelis K et al Met-abolic bone disease a continued challenge in extremely low birthweight infants Journal of Parenteral and Enteral Nutrition Avail-able at httppensagepubcomcontentearly20130820014860711349959037 Hack M Breslau N Weissman B Aram D Klein N BorawskiE Effect of very low birth weight and subnormal head size oncognitive abilities at school age N Engl J Med 1991325(4)231ndash23738 Young L Morgan J McCormick FM McGuire W Nutrient-enriched formula versus standard term formula for preterm infantsfollowing hospital discharge Cochrane Database Syst Rev 2012(3)CD00469639 Goyal NK Teeters A Ammerman RT Home visiting andoutcomes of preterm infants a systematic review Pediatrics 2013132(3)502ndash516




DOI 101542neo15-4-e123201415e123NeoReviews

Bree Andrews Matthew Pellerite Patrick Myers and Joseph R HagemanNICU Follow-up Medical and Developmental Management Age 0 to 3 Years

ServicesUpdated Information amp

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NICU Follow-up Care The Developmental and AdvocacyPerspectivesBree Andrews MD MPH

Patrick Myers MDdagger

Paula Osterhout MDDagger


MPHx Amy Zimmerman

JD Michael Msall MD

Author Disclosure

Drs Andrews Myers

Osterhout Pellerite

Msall and Ms

Zimmerman have

disclosed no financial

relationships relevant

to this article This

commentary does not


an unapproved



device

Educational Gaps

1 The extent and complexity of prematurity is creating a larger landscape of medical and

developmental needs from birth to age 18

2 Developmental trajectories for former premature infants are increasingly known and

modifiable

3 Social and legal supports for families with premature infants can change

developmental trajectories

AbstractThe responsibility for the medical and developmental care of the premature infant falls tothe neonatologist the general practitioner subspecialists and therapists as well as the fam-ily and available community resources This article reviews the landscape of developmentaldelays among former premature infants and offers a framework for screening and address-ing these delays in infancy and early childhood A holistic approach to developmental de-lays especially with regard to public benefits can mobilize resources early to assist familiesand shape the environment for the child both at home and at school The medical anddevelopmental team working together can improve the developmental trajectory of a child


1 Understand the multifaceted nature of developmental physical and learning delays

associated with preterm birth

2 Discuss the types and frequency of delays that occur

3 Offer strategies rooted in developmental advocacy to improve outcomes of infant(s)

after hospitalization

BackgroundWorldwide there are 15 million preterm births per year(1) In the United States 480000 infants are born at lessthan 37 weeks and 80000 are born at 32 weeksrsquo gesta-tion (2)

A collaboration including the World Health Organiza-tion recently published ldquoThe Global Action Report onPreterm Birthrdquo which stresses careful attention and earlyidentification of impairment and other follow-up issues(1) This mirrors the American Academy of Pediatricsrsquo(AAP) policy statement regarding the discharge ofhigh-risk neonates (3) despite the different challengesfacing premature infants at the local national and globallevels

Abbreviations

AAP American Academy of PediatricsBSID Bayley Scales of Infant DevelopmentCP cerebral palsyEI Early InterventionHUS head ultrasoundMLP Medical Legal PartnershipMRI magnetic resonance imagingROP retinopathy of prematuritySSI Supplemental Security IncomeVLBW very low birthweight

Assistant Professor of Pediatrics Pritzker School of Medicine The University of Chicago Attending Neonatologist Comer

Childrenrsquos Hospital Chicago ILdaggerAssistant Professor of Pediatrics Feinberg School of Medicine Northwestern University Chicago ILDaggerFellow in Neonatology Comer Childrenrsquos Hospital The University of Chicago Chicago ILxFellow in Neonatology Comer Childrenrsquos Hospital The University of Chicago Chicago ILChicago Medical Legal Partnership for Children Chicago IL

Chief Section of Behavioral and Developmental Pediatrics Professor of Pediatrics The Pritzker School of Medicine The University

of Chicago Chicago IL

Article developmental

e336 NeoReviews Vol15 No8 August 2014


Beyond the medical issues that permeate the care ofthe former premature infant the long-term neurodevel-opmental concerns are often farther reaching The ratesof impairment in premature infants have been docu-mented by four major international studies EPICure(4) from Great Britain and Ireland for infants born in1995 the Australian Cohort study for infants born in1997 (5) the NICHD study of infants born from1998 to 2001 (6) and the EPIPAGE study of French in-fants born in 1997 (7) Others have chronicled the per-sistent effects of prematurity on adolescence and youngadulthood (8) It is these survivors of NICU care that ac-count for 40 of children who have cerebral palsy (CP)(9) 25 of children with hearing impairment (10) and35 of those with vision impairment (11)

Infants born at the border of viability (between 22 and25 weeksrsquo gestation) seem to have similar rates of impair-ment and degree of impairment among survivors (4)(12)but predicting long-term outcomes for the current cohortof preterm infants remains difficult Continued changes inneonatal intensive care unit (NICU) care mean that im-pacts can be only anticipated but are not fully known until15 to 20 years later Child adolescent and adult function-ing is difficult to map to a specific individual based on a co-hort of individuals Protective factors such as maternaleducation and higher socioeconomic position also modifyrisk for some premature infants

Motor FunctionOverall 7 of surviving infants born at less than 1500gms birthweight have CP As gestational age decreasesthe risk of CP increases Substantial intellectual disability(IQ lt50ndash55) occurs in less than 5 of very low birth-weight (VLBW) infants and is most often associated withquadriplegic CP Although CP is a well-known develop-mental outcome of prematurity many parents and prac-titioners are not aware that the diagnosis of CP onlyaccounts for a portion of those with delays The Table(13)(14)(15)(16) describes the outcome risk of CPand developmental delay by birthweight

Motor delays are the earliest objective measure of aninfantrsquos overall condition (17) Two well-established mo-tor tests are the Test of Infant Motor Performance (18)used for infants 32 weeksrsquo corrected gestational age to 4months and the Alberta Infant Motor Scale (19) used todetect delayed motor performance at adjusted age 6 9and 12 months The Test of Infant Motor Performanceshows 80 diagnostic agreement with the Alberta InfantMotor Scale (20)

The General Movement (Fidgety) assessment is a newtool that aids providers in the detection of early normal and

abnormal infant movement patterns (21) Infants are vid-eotaped and their typical movements are analyzed usingthe GeneralMovement Toolbox software or a trained prac-titioner The toolbox software uses variables derived froma calculation of pixel displacement from frame to frameGeneralized movements described as either writhing (33weeks to 7 weeks post-term) and fidgety movements (8ndash17 weeks post-term) are characterized as normal or abnor-mal Those infants with generalizedmovement patterns de-void of complexity and variation are most at risk for CP

At adjusted age 4 months the Bayley Scales of InfantDevelopment (22) (BSID) can be used to detect cognitivemotor and speechcommunication delays The test hasbeen widely used and has two versions the BSID II andIII The BSID III expands the psychomotor component(or Psychomotor Developmental Index [PDI]) to includegross and finemotor components and separates the cognitive(or Mental Developmental Index [MDI]) from the expres-sivereceptive language components The BSID III classifiesfewer children above and below two SDs of the mean thanthe BSID II (23)(24) The BSID is typically used at adjustedage 4 12 18 and 24 months to evaluate for delays

NeuroimagingObjective measures of preterm neurodevelopment caninclude head ultrasound (HUS) computed tomographyand magnetic resonance imaging (MRI) and the choiceof modality varies among centers Very preterm andVLBW infants have an overall reduction in brain volume(25) HUS sensitivity for predicting long-term develop-mental outcomes is poor however specificity is goodand it is an inexpensive well-tolerated modality A normalHUS is only 60 predictive of normal neurodevelopmentyet an abnormal HUS grade IIIIV intraventricular hem-orrhage or periventricular leukomalacia is 90 predictive

Table Outcome Risk of CerebralPalsy (CP) and DevelopmentalDelay by Birthweight

Birthweight gRisk forCerebral Palsy

Risk forDevelopmentalDelay

lt750 15 50751ndash999 10 401000ndash1499 7 301500ndash1999 5 202000ndash2499 2 10gt2500 01 5

developmental nicu follow-upadvocacy

NeoReviews Vol15 No8 August 2014 e337


of some neurodevelopmental delay (26)(27) Using MRImild moderate and severe white matter changes corre-lated with cognitive delays in 15 30 and 50 of pa-tients who have severe cognitive delay Those withmoderate to severe white matter lesions had a 95 to105 times increased risk of severe psychomotor delay orCP (28) Diffuse white matter injury seen on MRI is pre-dictive of CP in preterm infants (29)

Cognitive DelaysAs children grow older different domains can be testedby using standardized measures such as the WechslerPreschool Scale of Intelligence (30) or Wechsler Intelli-gence Scale for Children (31) Standardized Behavior andadaptive questionnaires as well as screening tools for au-tism including the Modified Checklist for Autism inToddlers (32) In addition assessments of gross motormanipulative communicative and adolescent functioninginclude the Gross Motor Classification System (33) theManual Ability Classification System (34) the Communi-cation Function Classification System (35) and the ChildHealth and Illness Profile Adolescent Edition (36) as wellas evaluations for psychological functioning attention be-havior and conduct When parents find that a child is notfunctioning well in a specific domain the goal of the cli-nician is to recognize the concern evaluate it and establishresources to meet the needs of the child

The pathway to this solution can involve many differenttypes of assessments and interventions The AAP recom-mends (3)(37) that for former premature infants betweenages 0 and 3 years a formal developmental evaluation beperformed at least once between 9 and 18 months cor-rected age and within 2 months of a suspect or abnormaldevelopmental screening test Often when formal develop-mental testing is performed a battery of tests are done tofully represent the strengths and weakness of the child

School readiness is a construct used to understandhow a preschool child entering kindergarten is function-ing in relation to the goals of the learning classroom Do-mains that are included in school readiness includehealth physical development emotional well-being so-cial competence approaches to learning communicationskills cognitive skills and general knowledge (38) Ina group of preterm infants from Melbourne Australiathe standard scores in all domains of school readinesswere 05 to 10 full SD below those of term infants (39)

Behavioral DelaysIn a large meta-analysis of studies from 1980 to 2001premature infants had cognitive and behavior outcomes

evaluated after their fifth birthday Both cognitive andneuro-behavioral outcomes are correlated with decreas-ing gestational age Preterm infants were found to havean increase in externalizing (ie impulsivity hyperactivityoppositional behavior) or internalizing (ie depressionanxiety) behaviors (40) A second later meta-analysis ech-oed these findings and showed that both birthweight andgestational age were correlated with internalizing and ex-ternalizing behavioral disorders poor academic perfor-mance and worse executive function (ie verbalfluency working memory and cognitive flexibility)(41) In the Manual Ability Classification System-5 studyevaluating the impact of antenatal corticosteroids 1615infants had a 5-year follow-up that showed a 13 inci-dence of neurocognitive or neurodevelopmental disabil-ity that was defined as more than 15 SD from the normalvalues (42) A recent meta-analysis found verbal fluencyworking memory and cognitive flexibility were signifi-cantly poorer in children born very preterm (41)

In a study of 261 infants whose birthweight was lessthan 1000 g when evaluated at 8 years of age Hacket al (43) found that compared with controls preterminfants had an increased risk of generalized anxiety autis-tic disorder Asperger disorders and specific phobiasSeven infants in this group fulfilled the criteria for eitherautistic or Asperger disorder one child was diagnosedwith pervasive developmental disorder Fifteen percentof infants who did not fulfill full criteria were reportedto have symptoms coding for autistic or Asperger disor-der ldquooftenrdquo or ldquovery oftenrdquo A retrospective review of al-most 200000 infants born in Northern Californiashowed that the prevalence of autism spectrum disorderswas higher in all preterm infants (178) compared withterm infants (122) Infants born before 27 weeks werealso found to be three times more likely to have a diagno-sis of autism spectrum disorder compared with term in-fants (44) An upcoming challenge will be to convertresearch done by usingDiagnostic and Statistical Manualof Mental Disorders Fourth Edition criteria to the newDiagnostic and Statistical Manual of Mental DisordersFifth Edition which now uses the umbrella term ldquoautismspectrum disorderrdquo and is then further divided into differ-ent severity levels (45)

A Swedish study looked at former 23- to 25-weeksrsquogestation infantrsquos behavior and social developments atage 11 years The authors found that parents and teachersreported increased internalization and social problemsThe authors also reported an increase trend in self-reported feelings of depression (46)

Several meta-analyses have shown an increased risk ofattention deficithyperactivity disorder in preterm infants




(40)(41) Parents and teachers concurred in their evalua-tion that there were increased behavior problems and notethat attention problems were more pronounced (41)Evenwhen former preterm infants withmajor neurosensoryabnormalities and an IQ less than 85 were excluded therewas still a 12 rate of inattentive hyperactive and com-bined types of attention deficithyperactivity disorder (6)

Hearing ImpairmentEarly detection of hearing impairment is vital to maximiz-ing future linguistic and literacy potential in childrenSpeech delay can often be the first indication that thereis a deficit in hearing Key milestones to note includethe absence of babbling by 9 to 12 months or lack ofspeech by 12 months According to the AAP policy all in-fants should have their hearing screened by the age 1month and if they fail are entitled to more extensive hear-ing assessments It is recommended that this reevaluationoccur by no later than age 3months with a comprehensiveevaluation of both ears by an audiologist Once hearingloss is confirmed intervention is recommended by no laterthan age 6months For infants born at less than or equal to32 weeks audiology assessments every 6 months is usedfor surveillance until age 3 years For those without riskfactors regular surveillance at well-child visits with theirprimary care physician is advised (47)

Vision ImpairmentVision impairment is common among preterm infants25 go on to have strabismus (48) After the initial ret-inopathy of prematurity (ROP) period is stable infantswith any ROP should have a vision screening yearly start-ing at adjusted age 9 to 12 months Myopia is more oftenidentified in infants who had a history of an active stage ofROP when laser or bevacizumab treatment was requiredTwo-thirds of patients who had prethreshold ROP aremyopic in the preschool and early school years (49) Atage 10 years preterm infants were four times as likelyto have significant refractive errors compared with full-term controls (50) For those infants who did not havelaser-treated ROP or regressed or no documentedROP a verbal vision screening (verbal identification ofsymbols pictures or letters) at 3 to 4 years is appropriate

Feeding DelaysFeeding delays often prolong NICU hospitalization forboth preterm and term infants with either congenitalanomalies or intensive physiologic illness Some childrenwill go home using a gastrostomy or nasogastric tube fora portion of their feedings In addition human milk or

formulas are often enhanced in calories or thickness whensome of the feedings are by mouth (51) Connections tooutpatient swallowing therapy with the availability of fluo-roscopy evaluation (oropharyngeal motility studies) are im-portant in the discharge of a neonate with early dysphagia

Developmental SupportsInfant and toddler developmental assessment resources arethrough hospitals pediatric practices state 0- to 3-year-olddevelopmental programs (Early Intervention [EI]) andHead Start programs The AAP policy statement on NICUdischarge advocates for appropriate neurodevelopmentalsubspecialty home nursing and parental support and thatappropriate referrals have been made (3) Individual statesoften have laws that support this policy statement

Nationally all 50 states participated in federallyfunded EI programs Part C of the Individuals with Dis-abilities Act and in 2012 333982 eligible infants andtoddlers (0ndash3 years) received services (52) Each state in-dividually determines eligibility for preterm infants Re-ferrals for EI services also can be made at any timea delay is detected or a medical condition that typicallyresults in delay is diagnosed Once a referral is made toan EI program a multidisciplinary team assessment ismade EI evaluators determine the extent of delays ina number of domains physical gross and fine motorhearing and vision cognitive social emotional speechfeeding nutrition adaptive skills and social circumstancesResources for eligible families are provided mostly in theform of direct and consultative therapies In the UnitedStates approximately 87 receive services in their homes7 are community based and 6 are in other settings(52) The Figure is a diagram indicating how participationin EI services directly benefits familiesrsquo access to other ben-efits and community supports

The ideal setting for EI services is the childrsquos homeHowever once a child turns 3 the developmental homeof the preschooler becomes the local school and outpa-tient services are adjunctive As the provision of servicesshifts from concrete functions such as sitting walkingand talking to the complex arena of creating young learn-ers the child is typically transitioned to a learning envi-ronment with special educational services and supportIt is important for the NICU follow-up team and EIto assist with this important and often daunting transitionfor children and families It is intervention during the 2preschool years that paves the way for school readinessin kindergarten and grade school

The US Department of Education protects studentswith disabilities under Part B of the Individuals with




Disabilities Education of the Rehabilitation Act of 1973The law requires a school district to offer a ldquofree and ap-propriate public educationrdquo to each student with a disabil-ity A school will often create an individualized educationalplan or program recognizing a childrsquos needs for special ed-ucation This can be done from preschool at age 3 to youngadulthood based on the IDEA provision in the law

PhysiatryModifiable aspects of development are best improved bycontinuous and intermittent intensity therapies and sup-ports Orthosis for plagiocephaly has a window of 6 to 18months corrected gestational age Plagiocephaly is morecommon among those with developmental delays mul-tiple gestation and prematurity It often coincides withtorticollis Treatment uses both helmeting and physicaltherapy overall positioning and engagement (53)

Ankle-foot orthotics and superior malleolar orthoticssupport the stretching of the heel cord and the ankle align-ment to promote relaxed motion through the calf ankleand foot for stable and easy gait Children with spastic diple-gia often start with this type of positioning and can progressto the need for serial casting or botulinum toxin therapy

Preterm birth impairs the infantrsquos stress response dueto interruption of autonomic nervous system developmentPremature infants demonstrate prolonged and aberrantsympathetic response to stressors Autonomic nervous sys-tem development may be promoted by close skin-to-skincare with a caregiver as in kangaroo care (54) and massagecan improve the infant stress response (55) and improveweight gain (56)

For those with sensory and com-munication delays occupational ther-apists can teach parents and modifyattention by using pressure manipu-lations and stimulation systems toimprove cognitive attention Theseapproaches can be used across a spec-trum of delays frommodest to severeIn the most formal of approaches theApplied Behavioral Analysis therapistsare intensely involved with childrenwith autism working toward ideallearning and social behaviors

Advocacy and Public BenefitsPublic benefits are often a lifeline forformer premature infants In theUnited States low-income familiesthat qualify for Supplemental Secu-rity Income (SSI) benefits can re-

ceive up to $721 per month in 2014 Families also mayaccess additional specialized Medicaid programs such asstate home- and community-based waiver programs thatare designed to keep children who have severe disabilitiesout of institutional care These waiver programs can beused for additional supports such as home ventilatorshome dialysis and other nursing and equipment needsOften the parents of former premature infants need to in-terface with the Department of Health and Human Ser-vices Social Security Administration (SSI) durable medicalequipment companies compounding or specialized phar-macies and public human services programs to provide in-come and other supports such as the SupplementalNutrition Assistance Program Temporary Assistance forNeedy Families and Women Infants and ChildrenThe provision of all necessary services for a former prema-ture infant can allow the parents to work outside thehome provide housing developmental and educationalsupports to their children and to pursue the goals theyhad before giving birth to a medically complex child

Medical Legal Partnerships (MLPs) have strong rootsin pediatrics with the first Medical-Legal Partnership forChildren (MLPC) born at Boston Medical Center in the1990s The first comprehensive MLP research studyldquoProject Access A Medical Legal and Case Manage-ment Collaborationrdquo was implemented in Chicago Pro-ject Access followed VLBW NICU graduates for 12months post-NICU providing direct legal advocacyand case management and concluded that most familieshad between three and five unmet legal and case coordi-nation needs regardless of income (57)

Figure Early intervention linkages to child benefits and community supportsEI[early intervention SSI[Supplemental Security Income




MLPs provide legal advice and advocacy at both theindividual and systemic level Individual advocacy in-cludes appealing the denial of public benefits tenantrsquosrights access to SSI support for specialized equipmentlead abatement implementation of EI services and advo-cacy in the school system for special education Legal ad-vocacy is increasingly available in NICU follow-up clinicsMLPs provide legal care in 119 hospitals and 112 healthcenters in the United States (wwwmedical-legalpartner-shipsorg) Systemic advocacy typically emerges throughlegislative action to change infrastructure and implementimproved and timely services for vulnerable children

ConclusionThe discharge and developmental follow-up care of for-mer premature infants should be coordinated and com-prehensive The scope of the care of these infants isbroad ranging from medical intervention to implemen-tation of special education to serve the varied spectrumof typical and atypical delays that are seen in this popula-tion Increasingly unique systems such as legal advocacymay help patients obtain the necessary supports they needto thrive

ACKNOWLEDGEMENT Special thanks to Dr JosephHageman for his contributions and support of this article

References1 Howson CP Kinney MV Lawn JE Born Too Soon The GlobalAction Report on Preterm Birth March of Dimes PMNCH Savethe Children World Health Organization 2012 Available at

wwwwhointpmnchmedianews2012preterm_birth_reportenindex1html Accessed May 22 20142 Hamilton BE Hoyert DL Martin JA Strobino DM Guyer BAnnual summary of vital statistics 2010-2011 Pediatrics 2013131(3)548ndash5583 American Academy of Pediatrics Committee on Fetus andNewborn Clinical report hospital discharge of the high-riskneonate Pediatrics 2008122(5)1119ndash1126 ReaffirmedMay 20114 Costeloe K Hennessy E Gibson AT Marlow N Wilkinson ARThe EPICure study outcomes to discharge from hospital for infantsborn at the threshold of viability Pediatrics 2000106(4)659ndash6715 Hutchinson EA De Luca CR Doyle LW Roberts G AndersonPJ Victorian Infant Collaborative Study Group School-age out-comes of extremely preterm or extremely low birth weight childrenPediatrics 2013131(4)e1053ndashe10616 Gargus RA Vohr BR Tyson JE et al Unimpaired outcomes forextremely low birth weight infants at 18 to 22 months Pediatrics2009124(1)112ndash1217 Larroque B Ancel PY Marret S et al EPIPAGE Study groupNeurodevelopmental disabilities and special care of 5-year-oldchildren born before 33 weeks of gestation (the EPIPAGE study)a longitudinal cohort study Lancet 2008371(9615)813ndash8208 Hack M Schluchter M Forrest CB et al Self-reportedadolescent health status of extremely low birth weight childrenborn 1992-1995 Pediatrics 2012130(1)46ndash539 Behrman RE Butler AS eds Preterm Birth Causes 2005Washington DC Consequences and Prevention Committee onunderstanding premature birth and assuring healthy outcomesBoard on Health Sciences Policy Institute of Medicine NationalAcademies Press10 Centers for Disease Control and Prevention (CDC) (2011)Early Hearing Detection amp Intervention Program Available athttpwwwcdcgovncbdddhearinglossfactshtml AccessedMarch14 201411 Stoll BJ Hansen NI Bell EF et al Eunice Kennedy ShriverNational Institute of Child Health and Human DevelopmentNeonatal Research Network Neonatal outcomes of extremelypreterm infants from the NICHD Neonatal Research NetworkPediatrics 2010126(3)443ndash45612 Andrews B Lagatta J Chu A et al The nonimpact of gestationalage on neurodevelopmental outcome for ventilated survivors born at23-28 weeks of gestation Acta Paediatr 2012101(6)574ndash57813 Allen MC Cristofalo EA Kim C Outcomes of preterm infantsmorbidity replaces mortality Clin Perinatol 201138(3)441ndash45414 Moore GP Lemyre B Barrowman N Daboval T Neuro-developmental outcomes at 4 to 8 years of children born at 22 to 25weeksrsquo gestational age a meta-analysis JAMA Pediatr 2013167(10)967ndash97415 Msall ME The panorama of cerebral palsy after very andextremely preterm birth evidence and challenges Clin Perinatol200633(2)269ndash28416 Himmelmann K Uvebrant P The panorama of cerebral palsyin Sweden XI Changing patterns in the birth-year period 2003ndash2006 [published online ahead of print February 27 2014] ActaPaediatr Doi101111apa1261417 Seme-Ciglenecki P Predictive value of assessment of generalmovements for neurological development of high-risk preterminfants comparative study Croat Med J 200344(6)721ndash72718 Campbell SK Kolobe TH Osten ET Lenke M Girolami GLConstruct validity of the test of infant motor performance PhysTher 199575(7)585ndash596

American Board of Pediatrics Neonatal-PerinatalContent Specifications

bull Know the approximate risk of cerebralpalsy in very low birthweight (VLBW)moderately low birthweight and normalbirthweight infants

bull Know the incidence and range of severityof cognitive impairment in the generalpopulation and in high risk groups including infants withextreme prematurity or intrauterine growth restriction

bull Know the pattern of development delays that suggest hearingloss in infants and understand the consequences of hearingimpairment on development

bull Know the value and limitations of the Bayley Scales of InfantDevelopment (BSID) and other tests of psychomotordevelopment

bull Know the rationale for early intervention programs forinfants at risk for cognitive and behavioral problems




19 Piper MC Pinnell LE Darrah J et al Construction andvalidation of the Alberta Infant Motor Scale (AIMS) Can J PublicHealth 199283(suppl 2)S46ndashS5020 Campbell SK Kolobe TH Concurrent validity of the test ofinfant motor performance with the Alberta infant motor scalePediatr Phys Ther 200012(1)2ndash921 Einspieler C Prechtl HF Prechtlrsquos assessment of generalmovements a diagnostic tool for the functional assessment of theyoung nervous system Ment Retard Dev Disabil Res Rev 200511(1)61ndash6722 Bayley N (2006) Bayley scales of infant and toddler develop-ment 3rd Ed San Antonio TX Harcourt Asessment INC 200623 Moore T Johnson S Haider S et al Relationship between testscores using the second and third editions of the Bayley Scales inextremely preterm children J Pediatr 2012160(4)553ndash55824 Bos AF Bayley-II or Bayley-III what do the scores tell us DevMed Child Neurol 201355(11)978ndash97925 Peterson BS Vohr B Staib LH et al Regional brain volumeabnormalities and long-term cognitive outcome in preterm infantsJAMA 2000284(15)1939ndash194726 Whyte HE Blaser S Limitations of routine neuroimaging inpredicting outcomes of preterm infantsNeuroradiology 201355(2suppl 2)3ndash1127 Mirmiran M Barnes PD Keller K et al Neonatal brainmagnetic resonance imaging before discharge is better than serialcranial ultrasound in predicting cerebral palsy in very low birthweight preterm infants Pediatrics 2004114(4)992ndash99828 Woodward LJ Anderson PJ Austin NC Howard K Inder TENeonatal MRI to predict neurodevelopmental outcomes in preterminfants N Engl J Med 2006355(7)685ndash69429 Spittle AJ Boyd RN Inder TE Doyle LW Predicting motordevelopment in very preterm infants at 12 monthsrsquo corrected agethe role of qualitative magnetic resonance imaging and generalmovement assessments Pediatrics 2009123(2)512ndash51730 Wechsler D Wechsler Preschool and Primary Scale of Intelli-gence New York NY Psychological Corporation 196731 Wechsler D Wechsler Adult Intelligence ScalendashFourth Edition(WAISndashIV) San Antonio TX NCS Pearson 200832 Robins DL Fein D Barton ML Green JA The ModifiedChecklist for Autism in Toddlers an initial study investigating theearly detection of autism and pervasive developmental disorders JAutism Dev Disord 200131(2)131ndash14433 Wood E Rosenbaum P The gross motor function classifica-tion system for cerebral palsy a study of reliability and stability overtime Dev Med Child Neurol 200042(5)292ndash29634 Eliasson AC Krumlinde-Sundholm L Roumlsblad B et al TheManual Ability Classification System (MACS) for children withcerebral palsy scale development and evidence of validity andreliability Dev Med Child Neurol 200648(7)549ndash55435 Hidecker MJC Paneth N Rosenbaum PL et al Developingand validating the Communication Function Classification Systemfor individuals with cerebral palsy Dev Med Child Neurol 201153(8)704ndash71036 Starfield B Riley AW Green BF et al The adolescent childhealth and illness profile A population-based measure of healthMed Care 199533(5)553ndash56637 American Academy of Pediatrics Policy statement identifyinginfants and young children with developmental disorders in themedical home an algorithm for developmental surveillance andscreening Pediatrics 2006118(1)405ndash420 Reaffirmed Decem-ber 2009

38 Scott M Taylor HG Fristad MA et al Behavior disorders inextremely pretermextremely low birth weight children in kinder-garten J Dev Behav Pediatr 201233(3)202ndash21339 Roberts G Lim J Doyle LW Anderson PJ High rates ofschool readiness difficulties at 5 years of age in very preterm infantscompared with term controls J Dev Behav Pediatr 201132(2)117ndash12440 Bhutta AT Cleves MA Casey PH Cradock MM Anand KJCognitive and behavioral outcomes of school-aged children whowere born preterm a meta-analysis JAMA 2002288(6)728ndash73741 Aarnoudse-Moens CSH Weisglas-Kuperus N van GoudoeverJB Oosterlaan J Meta-analysis of neurobehavioral outcomes invery preterm andor very low birth weight children Pediatrics2009124(2)717ndash72842 Asztalos EV Murphy KE Willan AR et al MACS-5 Collab-orative Group Multiple courses of antenatal corticosteroids forpreterm birth study outcomes in children at 5 years of age (MACS-5) JAMA Pediatr 2013167(12)1102ndash111043 Hack M Taylor HG Schluchter M Andreias L Drotar DKlein N Behavioral outcomes of extremely low birth weightchildren at age 8 years J Dev Behav Pediatr 200930(2)122ndash13044 Kuzniewicz MW Wi S Qian Y Walsh EM Armstrong MACroen LA Prevalence and neonatal factors associated with autismspectrum disorders in preterm infants J Pediatr 2014164(1)20ndash2545 American Psychiatric Association Diagnostic and StatisticalManual of Mental Disorders 5th ed Arlington VA AmericanPsychiatric Association 201346 Farooqi A Haumlggloumlf B Sedin G Gothefors L Serenius FMental health and social competencies of 10- to 12-year-oldchildren born at 23 to 25 weeks of gestation in the 1990s a Swedishnational prospective follow-up study Pediatrics 2007120(1)118ndash13347 American Academy of Pediatrics Joint Committee on InfantHearing Year 2007 position statement principles and guidelinesfor early hearing detection and intervention programs Pediatrics2007120(4)898ndash92148 VanderVeen DK Bremer DL Fellows RR et al EarlyTreatment for Retinopathy of Prematurity Cooperative GroupPrevalence and course of strabismus through age 6 years inparticipants of the Early Treatment for Retinopathy of Prematurityrandomized trial J AAPOS 201115(6)536ndash54049 Quinn GE Dobson V Davitt BV et al Early Treatment forRetinopathy of Prematurity Cooperative Group Progression ofmyopia and high myopia in the Early Treatment for Retinopathy ofPrematurity study findings at 4 to 6 years of age J AAPOS 201317(2)124ndash12850 Larsson EK Rydberg AC Holmstroumlm GE A population-basedstudy of the refractive outcome in 10-year-old preterm and full-term children Arch Ophthalmol 2003121(10)1430ndash143651 Young L Morgan J McCormick FM McGuire W Nutrient-enriched formula versus standard term formula for preterm infantsfollowing hospital discharge Cochrane Database Syst Rev 20123CD00469652 Technical Assistance and Dissemination Network Number ofinfants and toddlers ages birth through 2 and 3 and older andpercentage of population receiving early intervention servicesunder IDEA Part C by age and state httpectacenterorgpartcpartcdataasp Accessed April 22 201453 Xia JJ Kennedy KA Teichgraeber JF Wu KQ BaumgartnerJB Gateno J Nonsurgical treatment of deformational plagiocephaly




a systematic review Arch Pediatr Adolesc Med 2008162(8)719ndash72754 Feldman R Eidelman AI Skin-to-skin contact (Kangaroo Care)accelerates autonomic and neurobehavioural maturation in preterminfants Dev Med Child Neurol 200345(4)274ndash28155 Acolet DModi N Giannakoulopoulos X et al Changes in plasmacortisol and catecholamine concentrations in response to massage inpreterm infants Arch Dis Child 199368(1 spec no)29ndash31

56 Dieter JN Field T Hernandez-Reif M Emory EK RedzepiM Stable preterm infants gain more weight and sleep less after fivedays of massage therapy J Pediatr Psychol 200328(6)403ndash41157 Barnickol L Hirschman J Justicz J Project Access a medicallegal and case management collaboration March 2005 Availableat wwwhdadvocatesorg_filesHDAFilesProgs20and20Svcs20for20Children20MaterialsPAFinal20Reportpdf AccessedMay 22 2014

Parent Resources From the AAP at HealthyChildrenorg

bull English httpwwwhealthychildrenorgEnglishages-stagesbabypreemiePagesWatching-for-Complicationsaspxbull Spanish httpwwwhealthychildrenorgEnglishages-stagesbabypreemiePagesWatching-for-Complicationsaspxbull English httpwwwhealthychildrenorgEnglishages-stagesbabypreemiePagesPreemie-Milestonesaspxbull Spanish httpwwwhealthychildrenorgspanishages-stagesbabypreemiepaginaspreemie-milestonesaspx





and Michael MsallBree Andrews Patrick Myers Paula Osterhout Matthew Pellerite Amy Zimmerman

NICU Follow-up Care The Developmental and Advocacy Perspectives








NICU Follow-up Quiz

1 Define the following termsa) Premature Infantb) Late Pretermc) Low Birth Weight (LBW)d) Very Low Birth Weight (VLBW)e) Extremely Low Birth Weight (ELBW)f) Chronologic or Post-natal ageg) Corrected Age

2 Most cases of bronchopulmonary dysplasia occur in infants with birth weights __________and who are born at a gestational age _____________

3 List pulmonary complications associated with BPDa)

b)

c)

d)

4 For infants with BPD maintaining O2 saturations of _________ may have beneficial effectssuch as promoting growth reducing the frequency of central apnea and reducing the transientelevations in pulmonary artery pressures associated with intermittent hypoxemia

5 All premature infants should be immunized based on their _________________ ageregardless of their weights and gestational age at birth

6 Bonus Question (requires independent research)Fill in the blanks regarding the nutritional content of 160ml of each of the following

Term Human Milk (estimates)

_____kcal _____g protein _____g fat _____mg Ca _____mg P _____ mg Fe

Enfamil Lipil

_____kcal _____g protein _____g fat _____mg Ca _____mg P _____mg Fe

Neosure


NICU Follow-up Mega-Case

You are seeing Michael a 6 month-old former 24 wk EGA preemie whose family recently PCSrsquod from Hawaii Per his AHLTA record his NICU course was significant for intubation for over 6 weeks bilateral grade III IVH and bilateral stage III ROP that was treated with Avastin He was 600g at birth His mother brings him in for his 6-month well visit and to establish a PCM Only parental concern today is wheezing and nasal congestion that he has had for the last 24 hours Per his mom she has not seen any increased work of breathing and denies any fevers

What other questions would you ask regarding Michaelrsquos history

According to his mother he was discharged at 35 months of age on 05L of NC O2 and a monitor Two weeks ago prior to leaving Hawaii he was taken off of supplemental oxygen by his previous PCM after one month of a slow wean and lack of significant events on his monitor He received his first dose of Synagis 1 month ago for RSV prophylaxis Mom reports that he was fed primarily fortified breastmilk after NICU discharge but that she ran out of the fortifier packets that she had been provided with and so now is feeding exclusive non-fortified breastmilk On exam today he has diffuse wheezing on auscultation but no increased work of breathing and his pulse oximetry shows that his SpO2 is consistently around 98 on room air

Given his history of chronic lung disease what would you do for his respiratory symptoms today Are any refer rals needed

Review the indications for use of Synagis (Palivizumab) for RSV prophylaxis See 2014-15 Guidelines in Extra Credit Materials

After giving him a trial of Albuterol in clinic you notice that he has improved air movement and decreased work of breathing on exam You place a pulmonology consultation and decide to send him home with an Albuterol MDI after spacer teaching

You then move on to plot his growth curve Which growth curve(s) should you use

Having selected the appropriate growth curve what is Michaelrsquos gestation-adjusted age

Michaelrsquos weight today is 34kg After plotting his growth curve (see above) you notice that his weight gain has started to plateau since discharge from the NICU His length and head circumference are tracking appropriately Per his mother he is breastfed 3 times daily mostly at night (She estimates that he receives 4oz of milk when he nurses) and takes 4 4oz bottles of expressed breast milk via a bottle during the day Michael has not been started on solid foods yet

Estimate Michaelrsquos average daily fluid (mlkgday) and caloric (kcalkg) intake

What may be contributing to his decreased growth velocity What can you do to increase his caloric intake and nutritional status

What fur ther recommendations would you provide for his ROP and his development

NICU Follow-up Board Review For test questions about ACUTE management see NICU BR on Chiefrsquos Corner

1 You are discussing infants who have low birthweights on rounds with your residents You remind them that somelow-birthweight infants (lt2500 g) are born at term after completing 37 weeksrsquo gestation and are considered smallfor gestational age (SGA) Other LBW infants are born preterm and their LBW status simply reflects thisOf the following the MOST likely outcome for term SGA infants isA head growth at 6 months postnatal age that lags behind weight and linear growthB linear growth that reaches the 50th percentile at 6 months postnatal ageC more common neurodevelopmental impairment at 2 years postnatal age than seen in preterm IUGR infantsD neurodevelopmental outcomes at 2yrs postnatal age compare favorably with term infantsE prediction of school performance is better at age 5 years than 2 years

2 A term infant is delivered by emergency cesarean section following the acute onset of maternal vaginal bleedingand profound fetal bradycardia on electronic fetal heart rate monitoring The Apgar scores are 1 2 and 3 at 1 5 and10 minutes respectively Resuscitation includes intubation and assisted ventilation chest compressions andintravenous epinephrine The infant is admitted to the neonatal intensive care unit and has seizures at 6 hours of ageOf the following a TRUE statement about infants who have seizures following perinatal asphyxia is that mostA develop epilepsyB develop microcephalyC do not have severe long-term neurodevelopmental delayD experience hearing lossE require multiple anticonvulsant medications

3 A term infant is delivered by emergency cesarean section following the acute onset of maternal vaginal bleedingand profound fetal bradycardia The Apgar scores are 1 2 and 3 at 1 5 and 10 minutes respectively Resuscitationincludes intubation and assisted ventilation chest compressions and intravenous epinephrine The infant is admittedto the neonatal intensive care unit and has seizures 6 hours after birthOf the following a TRUE statement about other organ-system injury that may occur in the infant is thatA cardiovascular injury is uncommonB hypoxic-ischemic encephalopathy usually is an isolated conditionC liver injury may result in a coagulopathyD most infants who have seizures develop cerebral palsyE necrotizing enterocolitis does not occur in term infants

4 You are following a 3-month-old infant who was born at 30 weeksrsquo gestation underwent a distal ileal resectionfor necrotizing enterocolitis at 2 weeks of age and subsequently was placed on parenteral nutrition for 2 monthsThe baby has residual cholestasis from the parenteral nutrition (total bilirubin 50 mgdL [855 mcmolL] directbilirubin 30 mgdL [513 mcmolL]) Currently she is receiving a cow milk protein hydrolysate formulaconcentrated to 24 kcaloz (08 kcalmL) You are considering adding a supplement to increase the caloric densityOf the following the supplement that is the MOST likely to be tolerated and cause less diarrhea isA flaxseed oilB medium-chain triglyceride oilC olive oilD omega-3 polyunsaturated fatty acid (fish oil)E soybean oil

5 An infant born at 34 weeksrsquo gestation comes in for her 1-month-old evaluation Her neonatal course wasuncomplicated Her parents ask if she will have delayed development due to her prematurityOf the following the MOST appropriate response is that healthy preterm infantsA have age-appropriate language skills by the time they are 12 months of ageB have an increased risk of mild motor impairmentC born at 32 to 36 weeksrsquo gestation have a fourfold increase in intellectual disabilitiesD should have their developmental age corrected for the degree of prematurity until 4 yrs of ageE show hand preference at an earlier age than term infants

NICU Follow-up Medical and Developmental ManagementAge 0 to 3 YearsBree Andrews MD MPH


MPHdagger Patrick Myers

MDDagger and Joseph R

Hageman MDx

Author Disclosure

Drs Andrews Pellerite

Myers and Hageman

have disclosed no

financial relationships

relevant to this article

This commentary does


an unapproved



device

Educational Gaps

1 Despite understanding the problems associated with the progression of a variety of diseases

in the neonatal intensive care unit (NICU) less is known about the course of common NICU

diseases after discharge

2 The management of NICU graduates requires complicated social medical and

subspecialty coordination

AbstractOver the last several decades the number of infants graduating neonatal intensive care units(NICUs) continues to increase despite advances in obstetrical practice Many of these NICUgraduates have complexmedical social developmental andmedicinal needs that require a phy-sician dedicated to providing a NICU follow-up medical home The object of the present re-view is to address the epidemiology and management of common problems that occur in theat-risk NICU graduate


1 Appreciate the epidemiology of common neonatal intensive care unit (NICU) diseases

in the outpatient setting

2 Describe the management and progression of common problems that affect the NICU

graduate

3 Understand the complexity and pitfalls of care of the NICU graduate

IntroductionThere are w4 million live births in the United States each year w400000 of which arepremature (1) Over the last few decades there has continued to be both an increase in

preterm births and a decrease in preterm mortality (2)which has led to the growth of academic and communityneonatal intensive care unit (NICU) programs dedicatedto medical and developmental follow-up of these infants

These successes are associated with complex medical anddevelopmental outcomes Post-NICU care has a unique andcomplex set of social cultural geographic and economic in-teractions NICU follow-up experts general pediatriciansfamily practitioners and an array of subspecialists now carefor former NICU patients in a myriad of settings

The goal of the present article was to guide practitionersin approaches to common NICU-related medical and devel-opmental management according to body system and sub-specialty Within each medical approach particular attentionis paid to long-term disease prevention and cost savings forthe benefit of both patients and clinicians

Abbreviations

AAP American Academy of PediatricsBPD bronchopulmonary dysplasiaCT computed tomographicECMO extracorporeal membrane oxygenationGERD gastroesophageal reflux diseaseIVH intraventricular hemorrhagePPV positive pressure ventilationPVL periventricular leukomalaciaROP retinopathy of prematurityRVH right ventricular hypertrophyVP ventriculoperitoneal

Associate Professor of Pediatrics Pritzker School of Medicine University of Chicago Attending Neonatologist Comer Childrenrsquos

Hospital Chicago ILdaggerFellow in Neonatology Comer Childrenrsquos Hospital Pritzker School of Medicine University of Chicago Chicago ILDaggerAttending Neonatologist Clinical Associate Pritzker School of Medicine University of Chicago Chicago ILxSenior Clinician Educator Pritzker School of Medicine University of Chicago Chicago IL and Emeritus Attending Pediatrician

NorthShore University HealthSystem Evanston IL

Article developmentalbehavioral issues














































































































MPHx Amy Zimmerman

JD Michael Msall MD

Author Disclosure

Drs Andrews Myers

Osterhout Pellerite

Msall and Ms

Zimmerman have




commentary does not


an unapproved



device

Educational Gaps




modifiable












Abbreviations
































































































NICU Follow-up Quiz




b)

c)

d)






Enfamil Lipil


Neosure
































































































































MPHx Amy Zimmerman

JD Michael Msall MD

Author Disclosure

Drs Andrews Myers

Osterhout Pellerite

Msall and Ms

Zimmerman have




commentary does not


an unapproved



device

Educational Gaps




modifiable












Abbreviations
































































































NICU Follow-up Quiz




b)

c)

d)






Enfamil Lipil


Neosure





















ncc pediatrics continuity clinic curriculum: nicu … · ncc pediatrics continuity clinic...

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