Lee Chuy, Katherine Lee, Sidney Albert C.L.

Legaspi, Roberto Jose Dela FuenteLerma, Daniel Joseph M.Li, Henry Winston Carpio

Li, Kingbherly LuLichauco, Rafael

Lim, Imee Loren ChanLim, Jason Morven Yu

Lim, John Harold SyLim, Mary Carmona

Lim, Phoebe Ruth Uy

1

2

Refers to structural defects, Refers to structural defects, chromosomal abnormalities, chromosomal abnormalities, metabolic errors, and hereditary metabolic errors, and hereditary diseases present at birthdiseases present at birth

Major causes of stillbirths and Major causes of stillbirths and neonatal deathsneonatal deaths

Early recognition of anomalies is Early recognition of anomalies is important for planning careimportant for planning care

Immediate medical and surgical Immediate medical and surgical therapy is essential for survival.therapy is essential for survival.

3

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

4

5

NAMENAME MANIFESTATIONSMANIFESTATIONS

Tracheoesophageal fistulaTracheoesophageal fistula Polyhydramnios, aspiration pneumonia, excessive salivation, unable Polyhydramnios, aspiration pneumonia, excessive salivation, unable to place nasogastric tube in stomach. Suspect VATER syndrometo place nasogastric tube in stomach. Suspect VATER syndrome

Choanal atresiaChoanal atresia Respiratory distress in delivery room, apnea, unable to pass Respiratory distress in delivery room, apnea, unable to pass nasogastric tube through nares. Suspect CHARGE syndromenasogastric tube through nares. Suspect CHARGE syndrome

Diaphragmatic herniaDiaphragmatic hernia Scaphoid abdomen, bowel sounds present in chest, respiratory Scaphoid abdomen, bowel sounds present in chest, respiratory distressdistress

Pierre Robin syndromePierre Robin syndrome Micrognathia, cleft palate, airway obstructionMicrognathia, cleft palate, airway obstruction

NAMENAME MANIFESTATIONSMANIFESTATIONS

Ductal-dependent congenital Ductal-dependent congenital heart diseaseheart disease

Cyanosis, hypotension, murmurCyanosis, hypotension, murmur

Neural tube defects: Neural tube defects: anencephalus, anencephalus, meningomyelocelemeningomyelocele

Polyhydramnios, elevated α-fetoprotein, decreased fetal activityPolyhydramnios, elevated α-fetoprotein, decreased fetal activity

Intestinal obstruction: volvulus, Intestinal obstruction: volvulus, duodenal atresia, ileal atresiaduodenal atresia, ileal atresia

Polyhydramnios, bile-stained emesis, abdominal distention. Suspect Polyhydramnios, bile-stained emesis, abdominal distention. Suspect trisomy 21, cystic fibrosis, cocainetrisomy 21, cystic fibrosis, cocaine

Gastroschisis, omphaloceleGastroschisis, omphalocele Polyhydramnios, intestinal obstructionPolyhydramnios, intestinal obstruction

Renal agenesis, Potter Renal agenesis, Potter syndromesyndrome

Oligohydramnios, anuria, pulmonary hypoplasia, pneumothoraxOligohydramnios, anuria, pulmonary hypoplasia, pneumothorax

6

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.

7

1. Physical Anomalies2. Metabolic Disorders3. Genetic Disorders

8

An abnormality of the structure of a body part

Some minor anomalies may be clues to more significant internal abnormalities

9

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)

10

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

11

12

13

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)

14

A moral dilemma is viewed in the context of four general ethical principles:

beneficence, nonmaleficence, autonomy, and justice

15

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

16

17

The state shall institutionalize a newborn screening program that is comprehensive, integrative and sustainable.

18

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

19

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

20

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

21

Metabolic disorders Phenylketonuria, galactosemia

Hormonal disordersCongenital adrenal hyperplasia,

hypothyroidism

Genetic disordersCystic fibrosis, Duchenne muscle dystrophy

Transplacental infectionsHIV, congenital toxoplasmosis

22

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

23

Altering human genetic patrimony aimed to cure illness or improve future quality of life with illness caused by genetic or chromosomal anomalies

-Bioethics for Students

•May be ethical provided that they respect the embryo’s life & integrity and do not involve disproportionate risks

24

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

25

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

26

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

27

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.

28

However, genetic manipulation that select sex or other predetermined qualities (gene enhancement) which change the genotype of the individual to improve a baby violates:StewardshipNon maleficenceRespect for human dignity

-Bioethics for Students 29

Any manipulation should enhance not diminish humanness

Efforts to go beyond nature are wrongWillfulness 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)

-Bioethics for Students 30

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.

-Bioethics for Students 31

The state of art is still with uncertainties and imperfections with yet unknown long term medical hazards.

Known genetic characteristics may lead to discrimination.

-Bioethics for Students 32

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.

-Bioethics for Students 33

ETHICAL ISSUES

34

The Value of Human Life Best Interest Deliberate action to end life

Critical Care Decisions in Fetal and Neonatal Medicine

Ethical Issues

35

The Value of Human LifeSANCTITY 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

36

Best Interestthe 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

37

Deliberate action to end lifeTaking 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

38

Three ApproachesAbsolutistSubjectivistProcedural Compromise

39

All newborns are personsTheir personhood is merely an extension of the

personhood possessed earlier by fetusesLike all other persons, they have the moral right to

receive everything to sustain life and not be prematurely allowed to die

40

Moral characteristics define personhoodAccording 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

41

Newborns as potential persons Infants will subsequently become person and they

will acquire full moral statusGrant 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

42

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?

43

What happened to Baby A?Procedural CompromiseNewborns as potential personsPhysicians: manual respiration, antibiotics and

hydrationParent: 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

44

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

45

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?

46

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.

47

Inviolability of life Stewardship Nonmaleficence Beneficence Justice

48

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.

49

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.

50

One should not do and risk harm

A healthcare giver should do no harm. Harm are providing incompetent care, disrespecting dignity etc.

51

One should prevent or remove harm or risk of harm, do good, provide a benefit.

One condition that require one to perform a beneficent act is:

THE ACTION IS NEEDED AND LIKELY TO SUCCEED

52

Justice is both a principle and a virtue relating to the rightness on people’s interactions and relationships.

One should give one another what is due.

53

54

Civil code of the Philippines Civil code of the Philippines Competency of minorsCompetency of minors Art. 38. Minority, insanity or imbecility, the state

of being a deaf-mute, prodigality and civil interdiction are mere restrictions on capacity to act, and do not exempt the incapacitated person from certain obligations.

Art. 402. Majority commences upon the attainment of the age of twenty-one years. • The person who has reached majority is

qualified for all acts of civil life.

55

Informed consentInformed consent

• Right & responsibility that each person has with regard to his/her own well-being & pursuit of happiness & eternal life.

• Physician, Patient, Proxy• Christian concept:

– Right to choose & request the medical care that will fulfill one’s responsibility to God, self & neighbor

• If a person is not able to give Informed consent, it must be obtained from the patient’s proxy

56

Elements of Free and Informed Elements of Free and Informed ConsentConsent

1. InformationPresentation – full disclosure to the person must be in understandable words and manner

2. Comprehension - the person must understand the information.

3. Freedom - independence of the person to make a free choice.Competence - ability of the person to receive the information, remember, understand, and assess it.

57

Children cannot provide informed consent because they lack the capacity to become fully informed

58

Person designated when the patient is not competent to make medical decisions himself/herself.pediatric patientsseverely ill patients

Selected from the patient’s family or by means of advanced directive.

- Basis : relative loves the patient, thus, medical decisions are based on relative’s best interest

59

Considered incompetent under the law Usual surrogates: Parents of the child Unusual circumstances: Other parties

authorized by law

60

The physician should: ascertain the exact nature of the relationship verify the authority of the surrogate document the legal basis of the surrogate-

child relationship and the exercise of the informed consent

61

Legal Assumed to act in the best interest of the

child Most appropriate decision makers

Genetic bondSocial aspect of the familyAffection for the childLong term relationship with the childLegal obligation to take care of the child

62

Grandparents Step-parents Adults not biologically or legally related

to the child

63

Issues in Therapeutic Therapy

1. Emergencies - situations when the child's life is in imminent danger and the parent cannot be informed should be treated with bias toward preserving life and limb at all cost

2. Disagreements - parents may be poorly informed about a disease process and its treatment; distrust the physician providing information.

Sometimes, physicians should oppose parental actions or decisions. The physician must always report suspected child abuse or neglect regardless of parental wishes Possible harm to child

64

3. Refusal of Medical Intervention (vaccination)

- gains and risks for the individual child need to be weighed, as well as the public health risk an unvaccinated child poses to other children (public health issue); medical neglect, withholding immunization from a child may harm that child

4. Disclosure of Information - information that is presented in an age-appropriate manner to help them participate in decision-making

65

Exceptions To Parental Authority 1. Special statutes giving authority to

minors2. Emancipated minors3. Mature minors4. During emergencies

66

1. Almost all jurisdictions now have special provisions for the treatment of certain conditions without the consent of the minor’s parents.

Drug Abuse Venereal Disease Contraception, Abortion and Mental Illness

(sometimes included and at other times are specifically excluded)

67

2. Emancipated Minors e.g. Married Minors, Those in the Armed

Forces and Those Living Away at College

3. Mature MinorsLegal Authorities Concluded that the Physician May Respond to their Requests Under the Following Conditions: 

Patient is at the age of discretion (15 years or older) Medical measures are taken for the patient’s own

benefit The measures can be justified as necessary by medical

opinion For some good reason It is also advisable for the physician to clarify any billing

arrangements, medical bills may be sent to parents and thus may breach the confidentiality of the patient

4. Emergency (self explanatory…)68

Parents of Serious Incompetence

Parents with psychiatric disorder Parents who seemed unable to

comprehend the needs and interests of a child

69

Neonatal Care• Withdrawal of life-sustaining

medical treatment: Who decides?1. Parents2. Physician3. Infant Care Review Committees

70

Parents; Presumed to be the appropriate decision-makers for their childrenLOVE is the factor that motivates them to do what is best

Physician; Position to help ensure that parental decisions do not close off a child’s open future as a unique person

Infant Care Review Committees; To assist parents and physicians in developing sound decisions regarding difficult choices

71