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
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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.
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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.
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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
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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.
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1. Physical Anomalies2. Metabolic Disorders3. Genetic Disorders
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An abnormality of the structure of a body part
Some minor anomalies may be clues to more significant internal abnormalities
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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)
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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
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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)
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A moral dilemma is viewed in the context of four general ethical principles:
beneficence, nonmaleficence, autonomy, and justice
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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
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The state shall institutionalize a newborn screening program that is comprehensive, integrative and sustainable.
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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
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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
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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
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Metabolic disorders Phenylketonuria, galactosemia
Hormonal disordersCongenital adrenal hyperplasia,
hypothyroidism
Genetic disordersCystic fibrosis, Duchenne muscle dystrophy
Transplacental infectionsHIV, congenital toxoplasmosis
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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
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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
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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
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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
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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
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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.
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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
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The Value of Human Life Best Interest Deliberate action to end life
Critical Care Decisions in Fetal and Neonatal Medicine
Ethical Issues
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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
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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
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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
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Three ApproachesAbsolutistSubjectivistProcedural Compromise
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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
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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
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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
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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?
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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
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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
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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?
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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.
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Inviolability of life Stewardship Nonmaleficence Beneficence Justice
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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.
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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.
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One should not do and risk harm
A healthcare giver should do no harm. Harm are providing incompetent care, disrespecting dignity etc.
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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
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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.
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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.
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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
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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.
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Children cannot provide informed consent because they lack the capacity to become fully informed
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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
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Considered incompetent under the law Usual surrogates: Parents of the child Unusual circumstances: Other parties
authorized by law
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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
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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
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Grandparents Step-parents Adults not biologically or legally related
to the child
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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
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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
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Exceptions To Parental Authority 1. Special statutes giving authority to
minors2. Emancipated minors3. Mature minors4. During emergencies
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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)
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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
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Neonatal Care• Withdrawal of life-sustaining
medical treatment: Who decides?1. Parents2. Physician3. Infant Care Review Committees
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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
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