Keeping Children With

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ARTICLE

Keeping Children With

Congenital Heart DiseaseHealthyCathy S. Woodward, DNP, RN, PNP-AC

ABSTRACTKeeping children with congenital heart disease healthy is

vital to their long-term survival and quality of life. Nursepractitioners are in an excellent position to keep these some-times fragile children healthy before, between, and after theircardiac surgeries. Primary care visits should address develop-mental morbidity. Referral for in-depth evaluations andintervention should be initiated for children with hemody-namically significant heart disease. Infants may also experi-ence poor feeding. Nutritional guidance may includefortifying formulas or enteral tube feedings. Attention toimmunization status and prevention of winter illnesses andendocarditis may reduce complications in this high-riskgroup of children. J Pediatr Health Care. (2011) 25, 373-378.

KEY WORDS

Congenital heart disease, pediatrics, surgical site infection,mediastinitis

The incidence of moderate to severe congenital heartdisease (CHD) is 6 per 1000 births (Hoffman & Kaplan,2002). Surgical correctionandthe medical managementof CHD has improved survival and allowed childrenwith this condition to enjoy a better quality of lifethan has been possible in the past. Keeping childrenwith CHD healthy is vitally important. Children with

CHD should be seen regularly by a pediatric cardiolo-gist, who will monitor their cardiac health. All childrenwith CHD should have a primary health care provider

who will monitor growth and nutrition, assess for at-tainment of developmental milestones, and ensuretimely administration of immunizations,as well as man-age common pediatric illnesses and injuries. Primarycare nurse practitioners (NPs) are in an excellent posi-tion to provide the first level of care to help keep thesefragile children healthy before, between, and after theircardiac surgeries. For the purpose of this article, theterm children will be used when information appliesto patients younger than 18 years of age with CHD, andthe term infant will be used when information specif-ically pertains to children younger than 1 year.

CLASSIFICATION OF CHD

In this article, patients with CHD will be classifiedby thedirection of blood flow through intracardiac shunts.Lesions that cause blood to flow left to right throughshunts are called acyanoticlesions. An example of anacyanotic lesion is an atrial septal defect (ASD). Whenblood flow is shunted across the ASD, it is normally inthe direction from the left atrium to the right atrium.Thus oxygenated blood returning from the lungs tothe left atrium shunts to the right atrium, where it mixeswith deoxygenated blood returning from the body,causing an increased volume load on theright ventricle.In most cases of ASD, the childs oxygen saturations arenormal and no symptoms are seen. Children with largeleft-to-right shunts mayhave so much pulmonary bloodflow that they require medical management for pulmo-nary congestion.

Children with right-to-left shunts have cyanoticlesions. Tetralogy of Fallot (TOF) is the most commoncyanotic congenital heart defect. The cardiacanomaliesthat present with TOF area narrow right ventricular out-flow tract, a ventricular septal defect, and an overridingaorta. Deoxygenatedblood flowexits theright ventriclewhere it meets obstruction as it tries to flow into the

Cathy S. Woodward, Assistant Professor, University of TexasHealth Science CenterSan Antonio, San Antonio, TX.

Conflicts of interest: None to report.

Correspondence: Cathy S. Woodward, DNP, RN, PNP-AC, 2430Enfield Grove, San Antonio, TX 78231; e-mail: [email protected].

0891-5245/$36.00

Copyright Q 2011 by the National Association of PediatricNurse Practitioners. Published by Elsevier Inc. All rightsreserved.

doi:10.1016/j.pedhc.2011.03.007

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pulmonary artery. Following the path of least resis-tance, some of the blood then flows across the ventric-ular septal defect (a right-to-left shunt), where it passesinto the aorta, having never gone to the lungs to obtainoxygen. Depending on the degree of right ventricularoutflow tract obstruction, thechild willhave varying de-grees of cyanosis and decreased oxygen saturationreadings.

Patients with mixed lesions or complex CHD pres-ent the greatest challenge to primary health care pro-viders. An example is a child with single-ventriclephysiology, such as hypoplastic left heart syndrome.Patients with this condition experience cyanosis andventilation-perfusion mismatch. For these patients,blood returning to the heart from the systemic circula-tion and blood returning from the lungs mixes beforebeing pumped by a single ventricle to the systemic andpulmonary circulation. Several palliative surgeries of-ten are required to redirect blood flow.

In general, children with unrepaired CHD and resid-

ual defects after surgery have an increased risk of mor-tality and morbidity because of their underlyingcardiopulmonary compromise. Primary care is the firstline of defense for these at-risk children. At each visitthe NP should monitor the child for growth and devel-opment, feeding difficulties, and immunization status.In addition, NPs can provide anticipatory guidanceand information on endocarditis, respiratory syncytialvirus (RSV) prophylaxis, and the prevention ofinfluenza.

DEVELOPMENTAL ISSUES

Developmental morbidity in infants and children withCHD is a potential problem that should be addressedduring primary care visits. The cause for developmentaldelay is multifactorial and can include changes due tochronic disease, genetic causes, or being placed on car-diopulmonary bypass. No clear patterns of delays existfor children with CHD, but screening tests such as theDenver II can easily be used with any child with CHDin the primary care setting. The Denver II test screensfor cognitive and behavior in four developmental do-mains; personal-social, fine motor adaptive, language,and gross motor. In one study of children evaluatedwith use of the Denver II test, one third of childrenwith CHD who required surgical or catheter interven-tions were found to have developmental delays in grossand finemotor movementsand in personal-social skills.The findings supported the early identification of de-lays and referral for early childhood intervention thera-pies for patients with hemodynamically significantCHD (Weinberg, Kern, Weiss, & Ross, 2001). In a re-cently reported study by Soul and colleagues (2009),38% of subjects with TOF, transposition of the great ar-teries, and ventricular septal defects were found to havehemosiderin foci, indicating subtle hemorrhagic braininjury, on magnetic resonance imaging at 1 year after

surgical repair. Thesefindingswere significantlyassoci-ated with lower scores on the Psychomotor Develop-mental Index. Another study by Kussman andcolleagues (2010) also demonstrated lower Psychomo-tor Developmental Index scores and hemosiderin fociin children who experienced perioperative periods ofdiminished cerebral oxygen deliver as measured bynear-infrared spectroscopy. In contrast, another study

reported no significant changes in neuropsychologicalstatus in children 6 months after repair of acyanotic le-sions (Quartermain et al., 2010).

These studies indicate the need for referral for devel-opmental testing and consideration of early childhoodintervention programs for children with delays notedon the Denver II screening test or for children withdelays in meeting developmental milestones. Whendelays are discovered in primary care, in-depth devel-opmental evaluations and intervention services areavailable for children with CHD through federallyfunded early childhood programs that are free for chil-

dren younger than 3 years.School-aged children with a history of newborn car-

diac surgery for complex congenital heart disease havebeen found to be at increased risk for inattention andhyperactivity, with many requiring remedial school ser-vices (Shillingford et al., 2008). Early recognition andreferral for testing and treatment for attention deficitand hyperactivity should be initiated during primarycare visits.

FEEDING AND GROWING

Infants with CHD, particularly those with complex

CHD, often experience poor nutritional statusas a resultof poor feeding (Jadcherla, Vijayapal, & Leuthner,2009). Because of their cardiopulmonary compromise,they may take longer to feed or have poor appetites andrefuse to eat. Oralaversion maydevelop in some infantsin whom oral feeding was delayed because of hemody-namic compromise at birth. Providing adequate calo-ries for growth can become a challenge for thesechildren and their families. Dietary consultationsshould be initiated for children with feeding difficultiesor poor weight gain.

Plotting weight and length/height at each primarycare visit is important. A red flag should be raised forchildren who are less than 5% on their growth chart,whose weight becomes disproportionate to theirheight, or for whom the rate of weight gain is lessthan 25% of expected findings. A quick calculation ofthe patients expected weight gain should tell the NPif the patient is consuming adequate calories with hisor her current feeding pattern. Newborns up to 3months of age should gain approximately 30 g perday. Infants 3 to 6 months of age gain approximately20 g per day, and older infants (ages 6 months to 1year) should gain about 12 to 15 g per day (Kliegman,Behrman, Jenson, and Stanton, 2007).

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Breastfeeding should be encouraged as long as theinfant is gaining weight. If the child needs additionalcalories, the mother can pump breast milk and fortifyit with formula so it equals 24 to 30 calories per ounceand bottle feed the child during some feedings. Reserv-ing breastfeeding for the nighttime or early-morningfeedings provides emotional and social contact. A sup-plemental nursing device, which adds concentrated

formula during nursing, also may be used.For bottle-fed infants, formula can be fortified to 24 to

30 calories per ounce to provide 120 to 150 kcal/kg/day. Parents should be advised to follow mixing direc-tions carefully.

For infants who fail to gain weight despite being fedfortified formula, enteral feedings can be initiatedthrough nasogastric or gastric tubes. Depending onthe infants needs, continuous or bolus feedings canbe started with use of fortified formula. Some motivatedfamilies can be instructed to bottle feed as desired dur-ing the day and calculate the calories ingested and then

give the remaining formula through a nasogastric orgastric tube continuously at night. The practice of send-ing high-risk infants home with a nasogastric tube iscontroversial because of a risk of aspiration if the tubeis dislodged or incorrectly placed. Therefore some pro-grams insert gastric tubes in high-risk patients beforethey are sent home. If an infant still is not gainingweightdespite these recommendations, the NP should consultwith the patients cardiologist.

The weight and height of older children with CHDshould be monitored at each visit. Dietary referralsshould be initiatedfor children above or below their ex-

pectedweight for height. The exercise of some children

with CHD may be limited by their cardiologist based onthe severity and type of their heart defect. Children withmixed lesions who have undergone single ventricle re-pair often have limited exercise capacity (Takken et al.,2007). Exercise and control of weight is important at allstages of life and should be addressed in consultationwith the childs cardiologist.

REVIEW OF CURRENT MEDICATIONS

Children with CHD often must take medications beforeand after their surgeries. Families should be encour-agedtocarryalistoftheirchilds medications, includingindication and dosing information. The types of medi-cations prescribed might include antiplatelet medica-tions for children with conduits or shunts. Somechildren with left-to-right shunts or mixed lesionswith pulmonary overcirculation will take diuretics orinotropic drugs. Afterload-reducing medications maybe ordered for children with mixed lesions and

single-ventricle physiology to reduce the workload onthe systemic pumping chamber. Infants or childrenwith pulmonary hypertension may taking pulmonaryvasodilator drugs. Table 1 provides examples of classi-fications of medications that may be used in childrenwith CHD. The NP should inquire about the use ofover-the-counter medications and review them withthe family to ensure that no adverse complications oc-cur. If any signs of renal insufficiency or drug toxicityappear, the cardiologist should be notified and druglevelsshouldbe obtained. Adjustment of doses becauseof weight gain also should be done in consultation with

the patients cardiologist.

TABLE 1. Classifications of medications used in children with congenital heart disease

Example Comments

Inotrope

Digoxin Consult w ith c ardiologist r egarding m onitoring l evels a nd e lectrolytes; a void h yperkalemia,

hypokalemia, hypercalcemia, and hypomagnesemia; do not suddenly discontinue

Anticoagulant/antiplatelet

Aspirin Round to nearest quarter of 81 mg tablet; consult with cardiologist about stopping aspirin

during febrile illnesses because of concerns for Reyes syndrome

Warfarin Doses based on international normalized ratio levels should be regulated by the patients

cardiologist; levels difficult to maintain in children < 5 y; instruct parents to report

unusual bleeding or bruisingAfterload reducers

Angiotensin-converting enzyme inhibitors

Lisinopril Hyperkalemia c an o ccur w ith r enal d ysfunction o r with u se o f potassium-sparing d iuretics;

monitor for hypotension when doses are changedCaptopril

Enalapril

Angiotensin II receptor blockers

Losartan May cause hyperkalemia; avoid use of potassium-sparing diuretics

Diuretics

Furosemide Monitor fluids and electrolytes

Spironolactone Potassium-sparing diuretic; avoid potassium supplements; consult cardiologist if signs

and symptoms of potassium toxicity are observed

Pulmonary vasodilators

Sildenafil Do n ot s uddenly d iscontinue b ecause e xacerbation o f p ulmonary hypertension c an o ccur

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IMMUNOCOMPROMISE AND IMMUNIZATIONS

The NP should review the childs current immunizationrecord at each visit. Children mayhave missed their reg-ularly scheduled immunizations because of surgery orillness, and catch-up immunization schedules may beneeded.Of particular interest when discussing immuni-zations in children with CHD are associated syndromesthat result in immunocompromise. One potentially

serious syndrome associated with complex CHD thatcan result in immunocompromise is DiGeorgesyndrome, which is caused by a deletion of 22q11.2.The most common cardiac defects associated withDiGeorge syndrome are TOF, interrupted aortic arch,truncus arteriosus, and pulmonary atresia. Patientswith these defects are often screened in the neonatalperiod for DiGeorge syndrome with use of fluorescentin situ hybridization.

Patients with DiGeorge syndrome exhibit a widerange of abnormalities including CHD, hypoparathy-roidism, and hypoplastic or absent thymus. The effects

of DiGeorge syndrome on cell-mediated immune re-sponse are related to thymic hypoplasia. The responseis widely variable, from no decrease in T cells to severelylowor absent T cells with a resultantdecrease in antiviraldefense and less effective B-cell production (McDonald-McGinn & Sullivan, 2011). In children with DiGeorgesyndrome, an immunology consultation and additionallymphocyte studies should be obtained before live virusvaccines are administered (Box). The absolute lympho-cyte count that is required before the administration oflive virus vaccines is unknown but may be consideredif the CD4 T-cell count is greater than 500 mm3 (Al-

Sukaiti et al., 2010; Perez, Bokszczanin, McDonald-McGinn, Zackai, & Sullivan, 2003). The decision to givethese live-virus vaccines should be made in consultationwith an immunologist and the patients cardiologist.

Asplenia, both functional and anatomical, can occurin conjunction with complex CHD, particularly in pa-tients with heterotaxy. In a patient with CHD who hasheterotaxy, the major visceral organs are distributed ab-normally within the chest and abdomen. Patients withheterotaxy often have many small, non-functionalspleens or no spleen at all (Cohen et al., 2007).The spleen provides primary immunologic defense by

being a reservoir for T lymphocytes that initiate theproduction of immunoglobulin M, the first antibodyproduced in infection. Therefore children with aspleniaare at an increased risk for infection. The risk for infantsyounger than 6 months of age is primarily infectionscaused by Klebsiella or Escherichia coli. After 6 monthsof age, the risk is greater for infections caused byNeisseria meningitidisand Streptococcus pneumoniae.

Therefore children with asplenia should take prophy-lactic antibiotics and should receive all their scheduledimmunizations (Price, Blanchette, & Ford-Jones, 2007).Table 2 provides a list of recommended antibiotics touse for prophylaxis. The age at which antibioticprophylaxis should be stopped is controversial, butthe American Association of Pediatrics (AAP) recom-mends that antimicrobial prophylaxis be discontinuedat 5 years of age provided the child has not hada pneumococcal infection and has received the recom-mended doses of pneumococcal immunizations (AAPCommittee on Infectious Diseases, 2000).

The current Centers for Disease Control and Preven-tion (CDC) recommendations for prevention of pneu-mococcal disease recommends that all children aged2-59 months receive13-valent pneumococ-cal conjugate vaccine(PCV13). An additionalvaccination is war-ranted for childrenaged 60-71 monthswho have medical con-ditions that increase

their risk for pneumo-coccal disease. Thisrec-ommendation would include children withasplenia andcongenital immunodeficiency (CDC, 2010b). In addi-tion, the CDC recommends that children who are at pro-longed, increased risk for meningococcal diseasesreceive two doses of quadrivalentmeningococcal conju-gate vaccine (MCV4) between 2 to 10 years and then re-ceive 1 dose every 5 yearsthereafter(CDC,2011). Table3lists recommendations for common immunizations forchildren with CHD.

PREVENTION OF ILLNESS

Winter illnesses, such as RSV and influenza, presenta major source of morbidity and mortality for childrenwith CHD. Strategies to prevent these common illnessesare an important part of primary care. Focusing on theeducation of families regarding hand hygiene andavoiding crowds during the winter months may reduceexposure.

All children are at risk for RSV during the winter. Ina study by Feltes and colleagues (2003), the use ofpalivizumab reduced RSV-associated hospitalizationsin children with CHD. The CDC and AAP providefrequently updated guidelines for NPs regarding the

BOX. Live virus vaccines

Measles, mumps, and rubella

Varicella

Rotavirus

Live attenuated influenza vaccine

Small pox vaccine

Oral polio vaccine

Yellow fever vaccine

Typhoid Ty21a oral

Bacille Calmette-Guerin

Cholera oral

Winter illnesses,such as RSV andinfluenza, presenta major source ofmorbidity andmortality for

children with CHD.



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use of palivizumab for RSV prevention. Children withcomplex cyanotic CHD or those with left-to-rightlesions who are taking medication to reduce pulmonarycongestionshould be offeredthevaccine starting in earlyfall andeach monthfor5 months duringtheir first 2 yearsof life. NPs can check the CDC Web site for the onsetof RSV infections in their area of the country and notifytheir high-risk patients whenRSV season is approaching.

Influenza is another cause of concern for childrenwith compromised hemodynamics due to heart disease.Influenza prophylaxis is recommended for all children

older than 6 months (CDC, 2010a). Caregivers andhousehold contacts of infants younger than 6 monthsshould receive the influenza vaccine. Live-attenuated in-fluenza vaccine is not recommended for children withCHD, but their caregivers and household contacts canreceive live-attenuated influenza vaccine. Childrenwith CHD who are older than 6 months should receive

the inactivated influenza vaccine. A second influenzavaccine is required in 4 weeks for children youngerthan 9 years who are receiving their first vaccine.

INFECTIVE ENDOCARDITIS PROPHYLAXIS

Certain children with CHD are at greater risk for mor-bidity and mortality associated with infective endocar-ditis. The American Heart Association recommendsmaintaining oral healthand hygiene with regularbrush-ing, flossing, and visits to the dentist starting at age 1year to reduce the incidence of bacteremia from daily

activities. Prophylactic antibiotics prior to dental proce-dures are limited to children with the highest risk ofadverse outcome resulting from endocarditis (Wilsonet al., 2007, p. 1745). Children at highest risk includethose with artificial heart valves, a previous history ofinfective endocarditis, and serious CHD. This categoryincludes children with cyanotic CHD, repaired defectswith prosthetic materials or devices for 6 months afterthe procedure, or any CHD with a residual defect(Wilson et al., 2007). Caregivers should be remindedto inform dentists and dental hygienists of their cardiaccondition prior to any dentalprocedures or cleanings.A

wallet card available on the American Heart AssociationWeb site can be downloaded and given to caregivers.

CASE STUDY

A 15-month-old presents to the NPs office for a regu-larly scheduled visit and to receive immunizations.The parents indicate that the child is in a usual stateof health, but theyare concerned thathe is not walkingyet. The childs medical history is significant for tetral-ogy of Fallot, which was diagnosed at birth, andDiGeorge syndrome. A complete repair was done atage 4 months, and residual mild pulmonary valve in-sufficiency is present. The last visit with the cardiolo-gist occurred when the child was 1 year old, and thefamily was told that another surgery might be neededin the next year to repair the pulmonary valve. Animmunologist has been monitoring the child for im-munocompromise related to DiGeorge syndrome,and the childs last CD4 count was 250 mm3.

The childs weight is 11 kg (birth weight was 3.5 kg).His length is 78cm (birth length was 50cm). Heis at the50th percentile for both weight and length. Currently heis taking furosemide, 10 mg by mouth twice a day.

The examination reveals a well-nourished, active 15-month-old. He is cruising around furniture but has not

TABLE 2. Antimicrobial prophylaxis recommendations for asplenic children

Age Prophylaxis Comments

2 mo-2 y Penicillin VK, 125 mg BID Allergy to penicillin; consider erythromycin, trimethoprim

2-5 y Penicillin VK, 125 mg BID or amoxicillin, 20 mg/kg/day BID Sulfamethoxazole or clindamycin

> 5 y Penicil lin VK, 250 mg BID or amoxicill in, 250 mg BID

BID, Twice a day.

TABLE 3. Overview of common immunizations

for children with CHD

CHD

CHD with

asplenia

CHD and

immunocompromised

DpT O O OMMR O O *Hep A O O OHep B O O OHib O O OPneumococcal O O ^ O ^

Rotavirus O O *Varicella O O *IPV O O OMeningococcal O O # O #

IAV O O OLAIV * * *

CHD, Congenital heart disease; DPT, diphtheria, pertussis, teta-

nus; MMR, measles, mumps, rubella; Hep A, hepatitis A; Hep B,hepatitis B; Hib, Haemophilus influenza type B; IPV, inactivated

poliovirus; IAV, inactivated influenza vaccine; LAIV, live attenu-

ated influenza vaccine; MCV4, meningococcal conjugate vac-

cine; PCV13, pneumococcal conjugate vaccine.

O Immunization should be given on time.*Immunization should not be given without immunology workup.#Administer additional MCV4 to children aged 2 through 10 years

with DiGeorge syndrome and persistent complement compo-

nent deficiency, anatomic or functional asplenia, and certain

other conditions placing them at high risk.^PCV13 for children aged 60 to 71 months with underlying med-

ical conditions that increase their risk for pneumococcal disease

or complications.

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walked unassisted. He says only mama and dada,smiles readily, and laughs out loud. A Denver Develop-mental II screening test is administered with deficitsnoted in personal/social, fine motor, and gross motordomains.

Based on the history of DiGeorge syndrome withimmunocompromise, a decision is made to withholdthe measles, mumps, rubella and the varicella live

virus vaccines. Anticipatory guidance regardingendocarditis prophylaxis and winter illness preven-tion with RSV prophylaxis and inactivated flu vaccineis provided.

Because of the results of developmental screening,a referral is made to a early childhood intervention pro-gram for further evaluation and intervention.

CONCLUSION

Children with CHD can present a challenge to primarycareNPs. These children mayrequire case managementwith a more focused attention on regular visits for

health maintenanceand prevention of ill-ness. Failure to thriveand feeding difficultiesare common amongchildren with CHDand should be ad-dressed at every pri-mary care visit.Immunization status,the need for RSV pro-phylaxis, and the avoi-

dance of live vaccinesis important for children with associated serious immu-nologic compromise. Influenza prophylaxis is recom-mended for all children and should be emphasizedfor children with CHD and their families. Primary carethat is focused on keeping children with CHD healthyis vital for their long-term health and wellness.

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Circulation, 116, 1736-1754.

Failure to thrive andfeeding difficultiesare commonamong childrenwith CHD andshould beaddressed at everyprimary care visit.

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