Pediatric Issues

1. Pediatric Issues Lee Chuy, Katherine Lee, Sidney Albert C.L. Legaspi, Roberto Jose DelaFuente Lerma, Daniel Joseph M. Li, Henry Winston Carpio Li, Kingbherly Lu Lichauco, Rafael Lim, Imee Loren Chan Lim, Jason Morven Yu Lim, John Harold Sy Lim, Mary Carmona Lim, Phoebe Ruth Uy

2. Congenital Anomalies

3. Congenital Anomalies • Refers to structural defects, chromosomal abnormalities, metabolic errors, and hereditary diseases present at birth • Major causes of stillbirths and neonatal deaths • Early recognition of anomalies is important for planning care • Immediate medical and surgical therapy is essential for survival.

4. Congenital Anomalies Approximately 3% of newborns have a serious handicapping or potentially lethal condition; in longterm studies the frequency is much higher.

5. Common Life Threatening Congenital Anomalies

7. Congenital Anomalies • Any medical condition that is present at birth • Can be recognized before birth (prenatally), at birth, or many years later • Does not imply or exclude a genetic cause • Can be a result of genetic abnormalities, the intrauterine environment, a mixture of both, or unknown factors.

8. Types of Congenital Anomalies • Physical Anomalies • Metabolic Disorders • Genetic Disorders

9. Physical Anomalies • An abnormality of the structure of a body part • Some minor anomalies may be clues to more significant internal abnormalities

10. Minor Physical Abnormalities • curvature of the 5th finger (clinodactyly), • a third nipple, tiny indentations of the skin near the ears (preauricular pits), • shortness of the 4th metacarpal or metatarsal bones, • dimples over the lower spine (sacral dimples)

11. Metabolic Disorders • Also referred to as an inborn error of metabolism • Most of these are single gene defects, usually heritable • Many affect the structure of body parts but some simply affect the function

13. Genetic Disorders

14. GENERAL MORAL OBLIGATIONS IN MEDICAL DECISION-MAKING • Respect the wishes of competent persons (autonomy) • Do not harm others (nonmaleficence) • Benefit others (beneficence) • Produce a net balance of benefit over harm (usefullness) • Distribute benefits and harms fairly (justice)

15. A moral dilemma is viewed in the context of four general ethical principles: • beneficence, nonmaleficence, autonomy, and justice

16. In Clinical Practice • situations arise where there is apparent conflict between different principles • in assessing which principle is the more important • give priority to what is in the best interests of the individual patient • weigh the possible benefits against the potential adverse effects for each proposed therapy

17. Neonatal Issues

18. Newborn Screening Act of 2004 • The state shall institutionalize a newborn screening program that is comprehensive, integrative and sustainable.

19. Newborn Screening Act of 2004 • Objectives • health practitioners are aware of the advantages of newborn screening and of their respective responsibilities in offering newborns the opportunity to undergo newborn screening • To ensure that parents recognize their responsibility in promoting their child’s right to health and full development

20. Provisions • Health care providers should inform the parents or guardian of the nature and benefits of newborn screening prior to delivery • Screening must be done after 24 hours but not later than 3 days after delivery • Patients that need to be placed in the ICU: before 7 years of age

21. Procedure • Blood sample: at least 24 hours after delivery • Obtained by pricking the baby’s heel (Guthrie spot) • Dried on a special paper • Sent to the Newborn Screening Program for testing

22. Importance • Metabolic disorders • Phenylketonuria, galactosemia • Hormonal disorders • Congenital adrenal hyperplasia, hypothyroidism • Genetic disorders • Cystic fibrosis, Duchenne muscle dystrophy • Transplacental infections • HIV, congenital toxoplasmosis

23. Principles • Identification of the genetic condition must provide a clear benefit to the child • a system must be in place to confirm the diagnosis • treatment and follow-up must be available for newborns affected with the condition

24. Genetic Manipulation • May be ethical provided that they respect the embryo’s life & integrity and do not involve disproportionate risks -Bioethics for Students Altering human genetic patrimony aimed to cure illness or improve future quality of life with illness caused by genetic or chromosomal anomalies

25. 3 different ways Splicing into human cells a healthy gene to displace a defective gene By administering pharamaceuticals containing altered cells By stifling harmful genes by interfering with their protein production

26. The efforts to eliminate defective genes through splicing or by limiting the activity of defective genes are ethically acceptable: • in the sense that they resemble the effort to use pharmaceuticals to sustain or improve health

27. Stem cells: • offer the possibility of renewable sources of replacement cells and tissue to treat illnesses • the main issue arises from the SOURCE of the cell • most are from aborted fetuses or frozen fetuses stored for future use  destruction to human beings

28. Solution = stem cells from adults • more adapted to overcoming rejection • in conclusion, genetic engineering is ethically acceptable provided that it is properly designed to protect human dignity and does not use as a source of stem cell embryonic material from human fetuses.

29. -Bioethics for Students • However, genetic manipulation that select sex or other predetermined qualities (gene enhancement) which change the genotype of the individual to improve a baby violates: • Stewardship • Non maleficence • Respect for human dignity

30. Stewardship -Bioethics for Students • Any manipulation should enhance not diminish humanness • Efforts to go beyond nature are wrong • Willfulness over giftedness (choose how the child should be rather than acknowledge them as gifts as they are) • Dominion over reverence (change accdg. to our desires are rather than accept as they are)

31. Stewardship -Bioethics for Students The right of parents to “beget” children instead to “design” them as well as to raise them with accepting and transforming love must be respected.

32. Non-Maleficence -Bioethics for Students The state of art is still with uncertainties and imperfections with yet unknown long term medical hazards. Known genetic characteristics may lead to discrimination.

33. Respect for human dignity -Bioethics for Students The fetus is objectified as something to be altered as desired. Financial gain or patents might be obtained from human genome in its natural state.

34. ETHICAL ISSUES

35. The Value of Human Life Best Interest Deliberate action to end life Ethical Issues Critical Care Decisions in Fetal and Neonatal Medicine

36. The Value of Human Life SANCTITY OF LIFE taking human life is categorically wrong and it is never permissible not to strive to preserve the life of a baby all humans are of equal intrinsic value and should be treated with the same respect under some circumstances preserving the life of a baby can only lead to an ‘intolerable’ existence (extreme level of suffering or impairment which is either present may develop in the future) Ethical Issues

37. Ethical Issues Best Interest the best interests of a baby must be a central consideration in determining whether and how to treat him or her interests can be understood in terms of the factors that affect a person’s quality of life constitutive elements of wellbeing - a person’s wellbeing prospers or declines as their interests grow or wane a person benefits from having their interests promoted and suffers from having their interests neglected Ethical Issues

38. Deliberate action to end life Taking intentional measures to end the life of a newborn baby is commonly regarded as a violation of the duty to protect the life of the patient This applies even when that baby’s condition is intolerable, with no prospect of survival or improvement Ethical Issues

39. What makes a Newborn a Person? Three Approaches Absolutist Subjectivist Procedural Compromise

40. Absolutist All newborns are persons Their personhood is merely an extension of the personhood possessed earlier by fetuses Like all other persons, they have the moral right to receive everything to sustain life and not be prematurely allowed to die

41. Subjectivist Moral characteristics define personhood According to Engelhardt, “ fetuses and infants should be viewed as human nonpersons because they lack the necessary and sufficient condition for being persons” According to Kant, “persons can be defined in terms of : self-consciousness, rationality and the possession of moral sense Infants lack these, so they lack the rights of person, which include the right not to be killed or prematurely allowed to die

42. Procedural Compromise Newborns as potential persons Infants will subsequently become person and they will acquire full moral status Grant parents and physicians the right to make withholding or withdrawal decisions jointly, in limited contexts and under limited circumstances Infants have the right not to be killed, allowed to die, or significantly, harmed, because they will naturally become actual persons

43. Case A Baby A was born prematurely, at 25 weeks gestational age, to a 21 year old unwed mother who had taken multiple abortifacients. At birth, the baby was limp, with no spontaneous respiration, poor cardiac activity and no response to stimuli What should be done?

44. Case A What happened to Baby A? Procedural Compromise Newborns as potential persons Physicians: manual respiration, antibiotics and hydration Parent: requested that the physician to do whatever possible despite her inability to pay the expenses Baby A went into cardiac arrest after 48 hours and died

45. Analysis How can this be ethical? The received care and respect due to a human being (a warm environment, manual ventilation, hydration and antibiotics) This treatment is not overly aggressive but nature was allowed to take its course

46. CASE B • Is duodenal atresia an opportunity for a mongoloid child to die young or is it merely a surgical emergency which should be dealt with like any other surgical problem?

47. DUODENAL ATRESIA • Complete obstruction of the duodedum which takes the form of an imperforate mucosal diaphragm or a string-like segment of bowel connecting intact proximal and distal intestine.

48. Christian Principles • Inviolability of life • Stewardship • Nonmaleficence • Beneficence • Justice

49. Inviolability of life • All human life from the moment of conception and through all the subsequent , is sacred. • It is a gift of GOD and the fruit of love. • The principle recognizes that death is a natural end of life and biological life is not the highest value.

50. Stewardship • Man has dominion over God’s creations: himself, other creatures and environment. • Man must take care and cultivate creatures within the creature’s innate nature and teleology and within man’s knowledge and understanding.