CLINICAL PRACTICE

AbstractWith the change in the demographic

data in the United States, nurses are

frequently involved in the care of

patients who come from different

cultures and hold different beliefs.

These patients may have beliefs that

differ from the beliefs of the nurse. To

give culturally sensitive care, the

nurse needs to listen carefully to the

family, try to avoid being judgmental,

and separate personal feelings and

beliefs. Nurses grow within their

practice as they learn about different

cultures and religions and integrate

that knowledge into their nursing

care. This article is a case

presentation about an acutely ill

Hasidic Jewish newborn with Down

syndrome. It will review the infant’s

medical problems, the family’s

religious and cultural beliefs, and how

nursing care was modified to optimize

the care.

Copyright 2002, Elsevier Science

(USA). All rights reserved.

CulturallySensitive CaseStudy: ANewborn withDown SyndromeBy Kiersten Wells, MS, RN, CPNP,and Ritamarie John, MSN, RN, CPNP

A critically ill infant was transferred from another facility due to abnor-mal cardiac echocardiogram, bleeding, hepatomegaly, and trisomy 21without translocation. Her mother and a social worker accompanied the

child. The father refused to come to the hospital.

Case Presentation

History of the Present Illness

The infant had dysmorphic facies typical of Down syndrome with upwardslanting palpebral fissures, widened inner canthus, Brushfield spots, low nasalbridge, small ears, and brachycephaly. Bilateral simian creases, short metacar-pals, and wide gaps between the first and second toes were also noted.1,2 Theinfant was diagnosed with trisomy 21 without translocation. At birth, the infanthad several purpuric lesions that covered the forehead and left eyelid and adiffuse pustular rash on the body, predominantly on the abdomen and face. Shehad serosanguineous discharge from the nose. The complete blood count (CBC)revealed lymphoblasts, and the diagnosis of congenital leukemia was suspected.

Mother’s Obstetrical History

A.K. was the sixth child for this 36-year-old Hasidic female. Her other 5pregnancies were remarkable for a premature birth at 30 weeks in the third childand the fourth child was stillborn at 20 weeks of gestation. The sixth pregnancywas complicated by gestational diabetes and borderline hypertension. Themother’s serum was screened with the expanded-alpha-fetoprotein screeningtest (X-AFP),3–5 but amniocentesis was not done due to religious objection (seeTable 1). The use of the X-AFP in place of amniocentesis or chorionic villussampling is controversial.4 The mother failed to follow the insulin regimen, butno diabetic ketoacidosis occurred. The mother’s hemoglobin A1C level waselevated at 11 (upper limit of normal for this laboratory test was 6.8) (see Table1). The only medication used during the pregnancy was insulin. The mother’stests for hepatitis B, human immunodeficiency virus (HIV), and syphilis werenegative.

From the Lucille Salter Packard Children’sHospital, Division of Adolescent Medicine,Stanford, CA; and Springfield Pediatric,Columbia University School of Nursing,New York, NY.

Address reprint requests to Ritamarie John,CPNP, 9 Corle Place, Hillsborough, NJ 08844.

Copyright 2002, Elsevier Science (USA).All rights reserved.

1527-3369/02/0204-0004$35.00/0doi: 10.1053/nbin.2002.36081 Newborn and Infant Nursing Reviews, Vol 2, No 4 (December), 2002: pp 207–213207

Immunizations and Current Medications

No hepatitis B vaccine was given. Vitamin K, 1 mg,intramuscular (IM) and erythromycin ophthalmic ointmentwere given at birth.

Birth History and Infant’s Hospital Course

The infant was born via a normal spontaneous vaginaldelivery to a 36-year-old mother with apgar scores of 9, 9,and 9. At birth, the infant was irritable and subsequentlyhad short sleep periods of 2 hours at a time.

Medical Problems by System

Respiratory. The child developed respiratory distresson the third day of life and was intubated and placed on

intermittent mandatory ventilation (IMV) 30, peak inspira-tory pressure (PIP)/positive end-expiratory pressure(PEEP) of l8/5, and 40% fraction of inspired oxygen(FiO2). A chest radiograph showed cardiomegaly with wetlungs. Over the course of 25 days, the FiO2 was decreasedto 23%, with a PEEP of 5 cm H20. Finally, the baby wasextubated and, after a few days on nasal continuous pos-itive airway pressure (CPAP), was weaned to nasal can-nula oxygen.

Cardiovascular. The child had 2 small ventricular sep-tal defects, patent ductus arteriosis with left to right shunt-ing, and a small patent foramen ovale. A small pericardialeffusion was also noted shortly after birth. Furosemide(Lasix) was given with subsequent decrease in cardiomegaly.

Infectious Disease. Septic workup was done, and am-picillin and gentamicin (Garamycin) were given for 7days. Toxoplasmosis, rubella, cytomegalovirus, and her-pes simplex (TORCH) titers were negative.

Hematology. The CBC was abnormal since birth (SeeTable 3).

Other Laboratory Values. Prothrombin time (PT), par-tial thromboplastin time (PTT) were normal since birth,but the neonatal thyroid screen was positive. The thyroid-stimulating hormone (TSH) value was elevated at 60mU/L, with normal being �40 mU/L. Free thyroxine (T4)was low at 4.0 �g/dL, with normal being 4.5 to ll.5 �g/dL(see Table 1).

Hematologic. There was concern that the child mighthave congenital leukemia, although transient leukemoidreaction (also called myeloproliferative syndrome) wasalso considered. The child was monitored for an increasingwhite blood count (WBC) and lymphoblast count.

Feeding and Nutrition. The liver enlargement was firmand enlarged to 4 cm below the right costal margin. Oncethe baby was stabilized, she advanced to oral feedings,tolerating 60 cc of Enfamil� (Mead-Johnson Nutritional,Mountainview, CA) every 3 hours with excellent weightgain.

Elimination. The baby had daily stools with wet dia-pers.

Integument. At birth, small, diffuse, pinpoint pustuleson the skin were present, predominantly on the face andtrunk. These lesions did not change during the first monthof life.

Social History

The family lived in a 3-room apartment with 5 children.The father worked full time as a teacher, and the motherwas a homemaker. The children attended the local Ortho-dox school, and the family was active in the local syna-gogue and neighborhood. There was a strong supportivecommunity that, like the family, spoke Yiddish. Due to the

Table 1. Understanding the Lab Work

Expanded alpha-fetoprotein screening test: Includes HCG,alphafetoprotein, and unconjugated estrogen.Hyperglycosylated HCG: Used since January 2000, it is

9.9-fold higher in Down syndrome cases than in normalpregnancies.3

Alphafetoprotein: Alphafetoprotein is a protein found in thefetus. Only very small amounts go into the maternalblood, unless there is a break in the fetal skin. It isproduced in the fetal liver and is present in only smallamounts in amniotic fluid due to fetal urination. It canbe elevated in the mother who is carrying a baby with aneural tube defect, such as spinal bifida andanencephaly.3,7

Unconjugated estriol: Rises progressively throughoutgestation. A decreased level early in the second trimestercan indicate a neural tube defect.3

Special note: Racial, ethnic background must be marked,since African Americans have 10% to 15% higher levelthan Caucasians and Asians. Gestational age, maternalweight, maternal age, diabetic static, and multiple fetusesmust be known to interpret test results.3

Neonatal screening for thyroid diseaseOne of the most preventable forms of mental retardation.Most programs use a 2-stage laboratory test to diagnose

hypothyroidism.TSH levels can be falsely positive from the mother.Ideal testing time is 2–6 days later.A low level of T4 and any level of TSH over 40 mU/L

indicate primary hypothyroidism.33

Hemoglobin A1c

HbA1c is formed when HbA is glycosylated with glucoseand will reflect the average blood sugar over the past1–3 months, with glucose control of the previous 2–4weeks heavily weighted.34,35

Abbreviations: HbA, hemoglobin; HbA1c, glycosylated hemo-globin; T4, thyroxine; TSH, thyroid-stimulating hormone.

208 Wells and John

Table 2. Stages of Grief and Nursing Care

General Response Intervention Cultural Input

Shock is the universal firstresponse to an acute situationand serves as the primarydefense mechanism of thepatient.

Avail yourself to the patient both physicallyand emotionally.

Allow parents to remain together as long asneeded.

If the situation calls for quick decisionmaking, help parents work throughemotions and ask for decisions.

Halachah Jewish Law is based on the Torah (5books and Moses and the Talmud).

Talmudic law does not discuss certainconditions or offer information forappropriate medical decisions. WhenTalmudic law does not discuss certainmodern medical problems, rabbinicalinterpretation is used in these instances. Thisexplains why different Rabbi may reachdifferent decisions.

Denial and Disbelief followsshock. Other feelings at thisstage include guilt, blame,fear, and a sense of failure.

Allow parents to vent their feelings.Know that parents will grieve all these

stages at different times.Reassure parents that feeling are normal.Give them safe and private place to talk.

Defect may be seen as punishment forwrongdoing or painful atonement of sins.

Others may view this as a challenge to theirfaith.

Adoption may be chosen, depending on theircommunity and the capability of theirdaughter to marry at this time.

Anger: Can also experiencehelplessness, frustration, andloss of control. It canmanifest as depression orjealous fits. They may alsotry to bargain with God.

Family may lash out at nurses or doctor.They may feel their bodies have failedthem and may refuse to help. The nursemust model for the parents and help themto assimilate normal behaviors, such asbathing and feeding when appropriate.

Feeling may turn to disappointment.

Hasidic women have an obligation to theirreligion to procreate. Their feelings may bepersonal but have a tremendous impact ontheir community.

They are not allowed to lie about the conditionof their baby; they may struggle with factthe baby is not at home. Allow them to ventthese fears.

Men will return home and maintain the familyimage to the community. Respect that this isa part of their religious obligation.

Sadness and depression may bemanifested by apathy,listlessness, withdrawal,increased crying spells,changes in sleeping, eatingpatterns, and sexualrelations.36,37

The mother may experience loss from thedecision to adopt.

Hasidic women may refuse counseling fromwestern therapists.

Hasidic families do not often choose to adoptchildren to other families.

If they do, it should be done through Hasidicor Orthodox agencies.

Mother may need extra sessions and helpdealing with the added grief from adoption.

This family does not have the support of theircommunity.

Need to use Rabbi for religious strength andsupport.

Equilibrium and reorganization. Time may help to heal guilt.Mothers and father may feel occasional

guilt seeing other families with healthychildren.

Having bereavement ceremony may behelpful.

The community will not know about theunhealthy infant. They will be told only thatthe infant cannot come home from thehospital. The adoption is often secretive.

The baby must be over 28 days to name thechild, and most likely a bereavementceremony may not be allowed. Hasidicfamilies will not be allowed to talk aboutthe death of a baby. The nurse caring forthe family may find it helpful to consultwith a Rabbi to be in accordance with theHalachah.

Viddui/Vidduy prayer (confessional prayer)may be said to the social worker or Rabbi.

A Newborn with Down Syndrome 209

closeness within the community, knowledge of a babywith a genetic defect had negative implications for the“marriageability” of the other children. As a result, thefamily decided to give the child up for adoption to aJewish adoption agency, where placement would besought with a Hasidic family. The family was on publicassistance and had Medicaid.

The parents refused any genetic counseling during theprenatal period and did not want genetic information afterthe delivery. The parents were aware of the seriousness ofthe child’s condition, and on the 27th day of life, the childwas transferred to a facility with an active oncology ser-vice for further evaluation. The infant would stay there for5 days prior to transfer to a long-term care facility, await-ing adoption by a Jewish family.

Summary

This child was a critically ill, 27-day-old infant with Downsyndrome, hepatomegaly, congenital hypothyroidism,transient leukemoid reaction versus congenital leukemia,congenital heart disease, and a history of pericardial effu-sion. Before discussing the nursing care, an overview ofthe key medical problems will be provided.

Medical Problems

Down syndrome is the most frequent form of mentalretardation, caused by a chromosomal aberration.2

The DNA sequencing of the 21st chromosome is a recentmajor milestone to understanding Down syndrome.6 Thisled to the identification of a proposed Down syndromeconsensus region of about 250 genes.7

The cytogenetics of trisomy 21 varies, but 95% have 3free copies of chromosome 21. A gamete should have asingle copy of one half of the parent chromosomes. Nor-mally, pairs of chromosomes split up and go to differentareas in the dividing cell. This is called disjunction. If,occasionally, 1 pair does not divide, the whole pair goes to1 spot, causing 1 gamete to have 24 chromosomes and theother to have 22 chromosomes. This accident is callednondisjunction. In meiosis I, homologous pairs of chro-

mosomes have replicated and now separate. There iscrossing over that occurs in this phase. If the nondisjunc-tion occurs in meiosis I, none of the gametes will have anormal number of chromosomes, some having 1 more andothers having 1 less. If the nondisjunction occurs duringmeiosis II, when the pair separates into gametes, there maybe 24 chromosomes in 1 gamete, 22 chromosomes inanother gamete, and 2 gametes with the normal number of23 chromosomes.

Translocations are far less common, affecting around5% of infants with Down syndrome. Translocations are thetransfer of a piece of 1 chromosome to a nonhomologouschromosome. Translocations are often reciprocal; that is,the 2 nonhomologous chromosomes swap segments. InDown syndrome, 1 copy is translocated to another acro-centric chromosome, usually 14 or 21. With transloca-tions, one fourth are related to a familial translocation, andthree fourths occur spontaneously or de novo. Within thetranslocation cases, there is nearly equal occurrence ofD/G and G/G translocations.1 In 2% to 4%, there is mo-saicism with 2 cell lines being present, 1 for the trisomyand the other for a normal cell line.1

Neonatal leukemoid reactions and true congenital leu-kemia can be difficult to distinguish.8–10 The genetics oftransient leukemoid reactions (also called myeloprolifera-tive syndrome) is not completely understood.7 Most in-fants do not survive the first months.7,11 If they do even-tually become stable hematologically, they are at high riskfor leukemia during early childhood.10 The clinical man-ifestations of an acute leukemoid reaction include elevatedWBC and an increase in primitive lymphoblast cells inperipheral blood. Variable symptoms include anemia,thrombocytopenia, bone marrow containing lymphoblastsor megakaryocytopoiesis, pericardial effusion, and liverdisease progressing to liver failure. One of the most dis-tinguishing features is the presence of megakaryocytes.Impaired cellular immunity, decreased immune surveil-lance, and a faulty DNA repair mechanism are also a partof this disease. Chemotherapy induction frequently fails toinduce a remission, and most infants do not survive thefirst month.11

Table 3. Complete Blood Counts

Date

WhiteBloodCount Lymphoblasts Platelets

H/Hg/dL/% SEGS Lymphocytes Monocytes Basophils

First day of life 41.4–52 20%–55% 149,000 15.2/45 36 20 2 1.5Third week of life 45–60 30%–45% 150,000 15/45 30 20 2 2.1

Abbreviations: H/H, hematocrit/hemoglobin; SEGS, segmented neutrophils.

210 Wells and John

Plan of Care

There are 250,000 Hasidim in the world, of which 200,000live in the United States, with approximately 100,000residing in New York State alone.12 Hasidism was startedin Europe by Rabbi Israel ben Eliezer (1700-1760), theBaal Shem Tov (the Master of the Good Name).12 Hestressed the value of religious observance and taught thatthere should be a strong belief in God, deep feelings, andstrict adherence to ritual.12

There are many groups with strong religious teachings;nurses need to be aware of how different beliefs mayaffect health care practices. This section will focus on thepsychosocial and genetic aspects of the care of this child.

The attitude toward mentally challenged children hasdramatically changed since the first half of this century,when such children were placed in institutions. In theUnited States, more resources are devoted to providingassistance to both mothers and to children.13 In a recentstudy, there was a 25% relinquishment rate of childrenwith Down syndrome in Israel.13 The study reviewed thecharts of 847 Jewish children with Down syndrome be-tween l979-l983 and l987-l991 and showed the relinquish-ment rate was not related to differences in gender, mater-nal age, birth order, birth weight, or in which period thechild was born.13 However, in the United States, mostrelinquished children with Down syndrome are adopted.14

Nurses need to understand the reasons why a family maydecide to give up a child and provide nursing care basedon knowledge of religious and cultural differences.

Multidisciplinary Approach

The overall goals for children with Down syndrome in-clude maximizing potential developmental milestones,providing emotional support for the family, developingplans of care that are culturally sensitive, reducing risks ofassociated complications by screening for problems, andmeeting the needs of both the child and the family. Amultidisciplinary approach is important to address themedical, developmental, psychological, recreational, andnutritional needs of affected infants to help the familymanage the genetic problem and maximize the potential ofthe child. However, the family’s wishes regarding whoshould be involved in the care of the child is very impor-tant and privacy wishes need to be discussed and re-spected. Since the family was not going to keep the child,it became very important to be available for the mother’semotional needs, while not being overly probing. Themother wanted privacy and that wish was respected. Themother did not want volunteers to visit for fear that theywould know people from her community.

Offering Emotional Support

Understanding that each family may have very differentemotional reactions to the birth of a child with a disability,the nurse accepted the mother and asked what could bedone to help her. According to Benkendorf,15 families willmost often grieve the loss of the idea of a new perfectchild. Benkendorf15 states the family will often go throughseveral different stages of grieving: shock, denial anddisbelief, sadness and anger, and equilibrium and reorga-nization. Table 2 shows the various stages of grief alongwith interventions and cultural aspects of care. It is im-portant to recognize that while the nurse may only see themother in the hospital, there are other family members thatmay feel loss, including the children and grandparents.

Providing Genetic Counseling

The basic genetic counseling plan should include the iden-tification of the patient’s ethnic or cultural group. Thefamily was active within a community of Hasidic Jews.The mother was the most important member of the familyfor this child. The parents had several children of “mar-riageable” age and did not want this child. The motherexpressed interest in maintaining contact with the babywhile in the hospital.

In order to provide genetic counseling, it is important tounderstand the cultural norms. Hasidic women do nottouch men and do not shake hands. Hasidic families do nottalk about death, but since the baby is being adopted, themother may use the term dead or talk about the patient inthe past tense. The baby was considered to be “dying” bythe mother. The most common feeling among Hasidicfamilies with children with a genetic syndrome is that theyare being punished or are paying painful atonement fortheir sins. Strauss16 states that many families do not ven-ture outside of communities to utilize special educationresources. Leyer17 showed that Orthodox parents adapt tostress in a similar way to parents with disabled children inother cultures. Communication with support groups andother families of children with Down syndrome might bebeneficial if the family plans to keep the child.17

Since the introduction of prenatal diagnosis for chro-mosomal anomalies in the l970s, the standard of care is tooffer maternal serum screening with a follow-up cytoge-netic diagnosis.7 The Jewish Rabbi refused amniocentesisbased on the religious decision. The hospital Rabbi wascalled at the request of the mother. It is important to checkwith the mother, who may not want to discuss anythingwith a Rabbi out of her community, since the 2 Rabbismay hold different opinions.

While it is important for the mother to understand theresults of the testing and to be offered additional genetic

A Newborn with Down Syndrome 211

testing, it is also important for her to be able to refuse anyfurther information. The mother wondered why there wasan increased risk for trisomy in the Hasidic population.Sharav18,19 felt that this may be the result of delayedfertilization and delayed sexual practices (niddah) of Ha-sidic women. Hasidic women separate themselves fromtheir husband for l4 days once their period starts. To endthe period of niddah, the women immerse themselves in aritual body of water (called the mikvah) on the seventh dayafter they have completed menstruating.20 This delay maydecrease the fertilization power of the ovum. There may bea delay in the fertility of sperm due to increased age ofmales, but most researchers feel maternal age is the pre-dominant factor in the increased risk for trisomy 21.4,21

The social worker did explain that as she feels better,she might be reminded of her daughter by seeing childrenwith similar problems on the street. She encouraged her tovent these feelings when they occurred. The social workerand the Rabbi at the hospital agreed to allow the mother tocall when she needed support. The mother was also en-couraged to pray when there was no one available for herto talk with.

Various ethnic groups that live in the United States seeWestern medicine differently, and health care providers needto consider this when planning care.22 When working withpatients from other cultures, a basic understanding of theirbeliefs toward medicine, as well as Western medicine, isimportant in understanding the differences in responses andmedical decision-making processes.23 If translators are used,they should be the same age or older and the same sex toprovide the best possible communication.22

The family may not want the child in their home, sincethey may feel it will affect the other children’s prospectsof marriage within the small community of which they aremembers. While Strauss16 reports that most families keeptheir baby, the Rabbi is frequently used as a person tofacilitate adoption. In this case, the hospital social workerstarted adoption plans with the approval of the hospitalRabbi. The adoption agency must specifically place Ha-sidic children with Hasidic families outside of the family’sstate. The hospital Rabbi may be chosen for monitoringthe adoption if the family does not want the local Rabbi toknow anything about the child.

Religious Plan of Care

Prayer is very important as a healing tool in the Jewishreligion. One of the most widely known prayers amongJewish people is the Shema, and it is commonly saidduring a crisis or when in stress or danger.23 To providecomfort for the mother, a Siddur or Jewish prayer bookwas at the bedside along with the Star of David. It wasimportant to coordinate who was coming to the bedside

and to coordinate care to allow the mother time for prayer.The Rabbi tried to come and pray 3 times a day. Nursingcare was planned so that it would not interfere with themother’s time to pray with the Rabbi.

The mother decided the Jewish social worker would hearher feelings. Vidui is a Jewish tradition similar to confessionamong Catholics, which enables the mother to make thingsright with God.24 The daily sessions with the social workerhelped the mother adapt to the feelings she may have whenshe sees other children with Down syndrome. Since she didnot use the local Rabbi, who is considered the spiritual leaderand educator of the community, she needed other hospital-based support to aid in counseling.

The formula must be Kosher, since in this family, themother accepted the diet of Kashrut (Jewish dietary law).The mother needed to eat kosher food. The Torah forbidsthe eating of animals that do not chew their cud and do nothave split hooves. Fish without fins or scales are alsoforbidden.25,26 To follow kosher dietary laws involveseating meat slaughtered in accordance with the Torah. Allfood must be prepared only with kosher utensils, andmixing meat and dairy products is not allowed.27

Jewish people are commanded by the Torah, the OldTestament. They believe that they should work for 6 daysa week and rest on the seventh day.26 The Sabbath is fromsunset Friday to the following night.26 Since the motherwas an active observer of the Sabbath, she had to refrainfrom all work from sunset Friday to sunset Saturday.During that time, the family will not turn on any electricswitches, ride any electrical vehicles, or do any work. Asa result, lights must be left on in patient care areas andbathrooms.

Denouement

The baby was stabilized and transferred to a long-termcare facility after 5 days. Adoption was never

achieved, and she stayed in the long-term care facility untilshe died at 42 days of life. No autopsy was performed, inaccordance with the mother’s wishes. The Shema prayerwas uttered by the mother at the time of the death, and themother performed the appropriate death ritual. The bodywas completely covered, with the feet pointing toward thedoor. The mother stayed with the baby until it was trans-ferred to the funeral home to ensure that the body wouldnot be desecrated by anyone. Most communities have anorganization to care for the dead, known as chevra kad-disha or holy society. The burial society in the mother’sneighborhood helped with the burial preparation, and theinfant was buried within 24 hours in accordance withJudaic law. The father never came to either the hospital orthe long-term care facility. However, the family did sit

212 Wells and John

during Shiva (death ritual for 7 days). The Shiva is arespected expression of grieving and closure with life onearth.24,28 The social worker was informed of the child’sdeath, and the mother requested that the nurses be toldabout the child’s death.

The nurses who cared for this infant gained a deeperunderstanding of how religious beliefs influence decisionmaking of parents. Respecting religious beliefs allowedthe health care provider to better meet the needs of thepatient. Each nurse had to deal with his or her own feelingsregarding the mother’s decision to give the child up foradoption. Understanding the religious and community im-plications enabled the nurse to provide more culturallyappropriate care.28–30 To provide culturally sensitive care,the nurse needs to ask questions of people who understandthe cultural norms and research articles to improve under-standing. The nurse needs to ask the family if the partic-ular cultural norm applies to that family, as each familymay not subscribe to every cultural practice.29 It is impor-tant not to stereotype but to allow the family to discusstheir beliefs in an accepting environment.31,32

Our ability to map the human genome and to predictgenetic problems in humans carries with it many dilemmasfor families. This case presents one of those dilemmas, sincethe family allowed the X-AFP testing but then wanted nofurther genetic counseling. There are many reasons for thiscase scenario, but in this case, the Rabbi did not want thefamily to have any further testing. Life is very important tothis religious group, and while the family did not want toraise this child, they did want to give the child life. As nurses,gaining knowledge about the family’s religious beliefs andaccepting those beliefs helped the nurses to provide care thatfacilitated supporting the mother.

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