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131110L - ETHICAL ISSUES IN NEONATOLOGY

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Lecture for 3rd year medical students at the Faculty of Medicine King Fahad Medical City on November 10, 2013 by Professor Omar Hasan Kasule Sr.


LEARNING OBJECTIVES 
·         To introduce students the medical, legal and moral concerns in the decision-making process during dilemmas in Neonatology
·         To understand the role of parents and doctors in the decision-making process in the commonly encountered dilemmas in Neonatology

KEY WORDS
·         Decision-making
·         Dilemmas
·         Roles
·         Ethical issues


PROBLEMS ARISING FROM THE INTRA-UTERINE PERIOD: intra-uterine growth retardation:
·         IUGR can be due to fetal, placental, or maternal factors.
·         The fetal factors are: congenital anomalies and congenital infections.
·         Placental insufficiency develops in the third trimester is caused by: abruptio placenta, placenta previa, placental thrombosis, placental infarctions, and multiple pregnancy.
·         Maternal causes of IUGR are: toxemia, HT, maternal malnutrition, narcotic abuse, alcohol intake, and cigarette smoking.

PROBLEMS ARISING FROM THE INTRA-UTERINE PERIOD: malformations:
·         Teratology is the study of abnormalities of embryogenesis.
·         Anomalies may be structural or may be disorders of metabolism.
·         Chromosomal anomalies are Down’s syndrome, Turner’s syndrome,
·         Congenital malformations are due to genetic factors, environmental factors, or an interaction between the two.
·         Environmental factors may be infections such as rubella, syphilis, and toxoplasma.
·         Irradiation, drugs, and chemicals cause anomalies.
·         Hormonal deficiencies and excesses can also cause anomalies.

PROBLEMS ARISING FROM THE INTRA-UTERINE PERIOD: Neoplams & malnutrition
·         Neoplasms are rare in neonates. The most common ones are Wilms' tumor, neuroblastoma, and various types of teratoma.
·         Protein and energy malnutrition in the mother affects fetal growth. Placental insufficiency decreases fetal growth. It may cause premature deliverym  and fetal distress,

PROBLEMS ARISING FROM THE PERINATAL PERIOD
·         Neonatal infections occur during the peri-natal period and may have long-term sequelae if not treated vigorously. Maternal infections may be viral (eg rubella), bacterial, or protozoal (eg toxoplasmosis). The microorganisms cross the placenta and attack the fetus.
·         Transplacental drugs: The following types of drugs can cross the placenta and cause adverse effects in the fetus: analgesics, sedatives, anti-hypertensives, antibiotics, and antithyroids. Narcotics and alcohol can cross the placenta.

PROBLEMS ARISING IN THE INTRA PARTUM PERIOD: birth injuries
·         Infants may have birth injuries due to dystocia or other causes.
·         Bruising, abrasions, and edema may occur.
·         Fractures or nerve injuries can occur but are rare. 
·         Severe anoxia may cause death or brain damage.

PROBLEMS OF THE NEONATAL PERIOD: Pre-maturity
·         Pre-term or premature infants are born before the 37th week.
·         Small for gestation age newborns must be distinguished clinically from the premature infants because treatments are different. 
·         Premature infants have respiratory problems due to deficiency of surfactant and have difficulty sucking at the breast.
·         Premature infants have more difficulty maintaining body temperature.
·         Prematurity is associated with higher mortality and mental retardation among survivors.

PROBLEMS OF THE NEONATAL PERIOD: infections
·         Infections can be transcervical or trans-placental.
·         Maternal rubella in the first 8 weeks of pregnancy is found in 50% of cases with congenital anomalies.
·         CMV infection may cause death or brain damage among survivors.
·         Toxoplasmosis may cause microcephalus, hydrocephalus, and mental retardation.
·         Infections are bacterial and cause pneumonia, meningitis, and septicemia
·         Infants with agammaglubulinemia may die of overwhelming infections.

PROBLEMS OF THE NEONATAL PERIOD: metabolic disorders: .
·         Tetany can occur due to low serum calcium, high plasma phosphate, or low plasma magnesium. 
·         Metabolic disorders due to genetic causes are more severe and long-lasting.
·         The common metabolic disorders are inborn errors of metabolism such as  PKU, galactosemia, cystic fibrosis, SIDS.
·         Phenyketonuria (PKU) is due … and is detected using the Githrie test. It is easily managed by dietary modifications.

PROBLEMS OF THE NEONATAL PERIOD: Respiratory disorders:
·         The Respiratory distress syndrome is common in the premature infants, infants of diabetic mothers, and infants delivered by Ceserian section. 
·         Pneumothorax and atelectasis occur and may be fatal
·         Pneumonia may be due to pre-natal or post-natal infection.
·         Meconium inhalation may block respiration.
·         Pneumothorax and atelectasis may occur.
·         Sudden Infant Death Syndrome (SIDS) usually at night and of unknown cause

PROBLEMS OF THE NEONATAL PERIOD: Cardiovascular disorders:
·         Neonatal cardiovascular disorders are congenital either due to chromosomal anomalies, infection (eg rubella), or developmental anomalies of unknown cause.
·         Congenital cardiovascular disorders are associated with chromosomal disorders (Down’s or Turner’s syndromes) or maternal rubella
·         Blood disorders: Erythroblastosis fetalis is due to incompatibility between an Rh-negative mother and an Rh-positive infants. Anemia is a neonatal blood disorder.

PROBLEMS OF THE NEONATAL PERIOD: Gastrointestinal and genitourinary disorders: 
·         Vomiting may be due intestinal obstruction or overfeeding. Infants may have pyloric stenosis or various forms of intestinal obstruction
·         Physiological jaundice is normal in newborns. Neonatal jaundice may be physiological or may be due to septicemia, liver disorders, or bile duct obstruction. Excessive jaundice causes nerve damage (kernicterus) that leads to deafness and cerebral palsy
·         Kidney and urinary tract disorders: Neonatal kidney anomalies are usually congenital such as renal agenesis, renal dysplasia, and polycystic kidney. The bladder or the ureter may be obstructed. Infections.

PROBLEMS OF THE NEONATAL PERIOD: neural tube defects
·         The neural tube, the embryonic structure that develops into the central nervous system, normally closes by the end of the third week of fetal growth; severe deficits result if it fails to close.
·         Examples of neural tube defects include the absence of brain (anencephaly) and a cyst replacing the cerebellum. The spinal canal or cord may also fail to close up.

PROBLEMS OF THE NEONATAL PERIOD: neural tube defects: spina bifida
·         Spina bifida is a neural tube defect that varies in severity.
·         In spina bifida occulta there is only X-ray evidence of damage to the spinal cord.
·         The meningocele form of the spina bifida disorder is characterized by a meningeal pouch that visibly projects through the skin. Spina bifida meningomyelocele is diagnosed when such a pouch contains elements of the spinal cord or nerve roots.
·         Function of the legs and bladder and bowel control is often severely impaired in individuals with spina bifida. Infants with the defect commonly have hydrocephalus as well.

 PROBLEMS OF THE NEONATAL PERIOD: neural tube defects: hydrocephalus
·         Hydrocephalus, the accumulation of cerebrospinal fluid in the ventricles, or cavities, of the brain, causes progressive enlargement of the head.
·         The condition usually results from a congenital malformation that blocks normal drainage of the fluid.
·         A tube called a shunt is required to drain cerebrospinal fluid from the brain and prevent further expansion of the skull.

PROBLEMS OF THE NEONATAL PERIOD:  Nervous, endocrine, musculoskeletal disorders and neoplasms:
·         Nervous system disorders are usually congenital: anencephaly, microcephaly (retarded brain growth), hydrocephalus (CSF obstruction), and spina bifida.
·         Infants may convulse due to traumatic brain injury, infection, or metabolic disorders.
·         Convulsions are due to brain damage or due to infections or metabolic disorders.
·         Endocrine disorders are congenital such as hypothyroidism and adrenal hyperplasia
·         Congenital musculoskeletal disorders include clubfoot (talipes equinovarus), talipes calcaneovulgus, and dislocation of the hip
·         Tumors, benign and malignant. The malignant tumors are usually: neuroblastoma, retinoblastoma, and Wilm's tumor
 
PROBLEMS OF THE NEONATAL PERIOD:  Maternal disease:
·         Infants of diabetic mothers have large organs (macrosomia), hypoglycemia, and respiratory distress.
·         Infants born to mothers addicted to heroin or morphine suffer from withdrawal symptoms. Infants of alcoholic mothers may get the feto-alcohol syndrome which consists of mental retardation, growth retardation, and microcephaly.
·         In mild or moderate maternal malnutrition, the infant may not be affected. The infant is affected in severe maternal malnutrition.
·         Fetal malnutrition may be caused by placental insufficiency.

FIQH ISSUES FOR THE NEW BORN..1.
·         Adhan and iqamat are required for the newborn.
·         A name should be chosen as soon as possible. A problem could arise in cases of indeterminate gender.
·         The ‘aqiiqah ceremony for the newborn is a social occasion for introducing the baby as a new member of the community.
·         Uncontrollable bleeding may complicate circumcision of newborns with hemostatic diseases. Screening newborns for metabolic & genetic disorders is encouraged since it leads to discovery of diseases early to enable earlier treatment.

FIQH ISSUES FOR THE NEW BORN..2
·         Newborn Immunization is encouraged because it prevents disease.
·         Breast-feeding is mandatory for 2 years according to Qur’anic injunction. Breast-feeding by a wet-nurse is allowed. Milk banks are discouraged because they may create unregistered foster relations that invalidate marriage later in life. Payments are made to a divorced mother for breast-feeding the baby.
·         Nafaqat includes all material sustenance needed for the infant such as food, clothing, and medical care. The father is responsible for nafaqat during marriage and also after divorce. The extended family and the state are responsible for financial maintenance of single poor mothers.

ETHICAL DILEMMA 1: Dystocia and interventions:
·         In difficult labor, contradictions in the purposes and principles of the law can arise because there are two lives to consider, the mother and the fetus.
·         Early medical and surgical intervention in the birthing process is generally for the benefit, maslahat, of the mother but could be detrimental, dharar, to the pre-mature fetus.
·         In some cases like those of ecclampsia, early delivery is more to the benefit of the mother but delay of delivery could eventually be harmful to the fetus as well.
·         The principle of necessity, dharuurat, is invoked in situations of respiratory distress when delivery must be effected as early as possible to prevent further deterioration in the fetus.

ETHICAL DILEMMA 2: vaccination
·         According to the purpose of preserving life, taking an infant for immunization is waajib. Vaccination is usually against smallpox, chicken pox, measles, and mumps.
·         The risk of vaccination reactions is small compared to the advantages of the procedure.

ETHICAL DILEMMA 3: delivery of neural tube defects
·         Before OR at term? Anencephaly, Spina bifida, Hydrocephalus
·         Vaginal OR Caeserean? Anencephaly, Spina bifida, Hydrocephalus
·         CPR at birth: provide or withhold: Anencephaly, Spina bifida, Hydrocephalus

ETHICAL DILEMMA 4: routine neonatal screening
·         Disease screened for: PKU? Cystic fibrosis? Sickle cell disease? Muscular dystrophies?
·         Ethical issues: Informed consent, Benefits vs risks, detection of carriers (worry for nothing?)

ETHICAL DILEMMA 5: decisions
·         Parents and doctors disagree
·         Parents disagree with one another

ETHICAL DILEMMA 6: disclosure of anomaly to parents: case study 1
·         Zulaikha, a 45-year old housewife and mother of 7 healthy children, went into labor with no worries or anxieties since she has been through this many times.
·         When the baby was delivered she wanted to see him immediately but the midwife seemed reluctant and her face showed that she was worried but she said nothing.
·         The mother was told that the doctor has been called to look at the baby and that after that she will be able to see and hold the baby. Zulaikha suspected that something was wrong because on previous occasions she was able to see and hold the baby immediately.
·         She was told after half an hour that the baby had difficulty in breathing and was being treated in the intensive care unit.
·         Q1. What ethical issue (s) can you identify at this stage?

ETHICAL DILEMMA 6: disclosure of anomaly to parents: case study 2: Pediatric examination:
·         Examination by a specialist physician showed a child with unusual facial features but not much was made of these because normal new borns have faces distorted by the birthing process.
·         Heart murmurs were heard.
·         The examining pediatrician requested chromosomal analysis. The results indicated a karyotype of 47,XY,+21.
·         Q2. What do you think is the problem?

 ETHICAL DILEMMA 6: disclosure of anomaly to parents: case study 3: Encounter with the pediatrician 2
·         It was not until 3 days after birth hours later that the pediatrician came to talk to Zulaikha.
·         The doctor went straight to the matter ‘I am sorry Mrs Zulaikha, you have produced an abnormal baby with a congenital condition of genetic origin. You should not be surprised at this outcome because mothers of your age have a high risk of having abnormal babies.
·         Someone should have advised you not to get pregnant this late in your life. We have delivered a couple of such babies in the past but very few survived early childhood. I only pray that your also survives for sometime’.

ETHICAL DILEMMA 6: disclosure of anomaly to parents: case study 4: Encounter with the pediatrician 2
·         Mrs Zulaikha asked the pediatrician why she was not informed of the genetic anomaly during pregnancy.
·         The pediatrician answered that it was the fault of the obstetrician who looked after her in the pre-natal period.
·         Q3. What is your opinion about the communication between the pediatrician and Mrs Zulaikha?
·          Q4. Give a reason for and reason against screening for genetic anomalies during pregnancy

ETHICAL DILEMMA 6: disclosure of anomaly to parents: case study 5: Encounter with the baby
·         Zulaikha was shocked but she retained her calm and asked the doctor that all she needed was to see the baby. The doctor ordered the nurse to bring the baby.
·         Zulaikha was shocked to see the baby and refused to touch him. “This is an abnormal baby. This is not my baby. You have mixed up my baby with someone else’s baby. I actually suspected this because the midwife would not let me see the baby immediately after delivery as is the usual practice’.
·         She started crying and moving off the bed and has to be restrained and calmed down.
·         The baby was taken back to the newborn nursery.