beginning of life

Beginning of Life

Pediatric IssuesBy: 2D-MDQue, Scylla Kneisel C.Querubin, Genevieve Anne R.Quetulio, Ma. Kristina A.Quito, Ederlyn P.Rabo, Justin Iohanne S.Rama, Ardie S.Ramones, Roma P.

PEDIATRIC ISSUES

http://www2.doh.gov.ph/noh2007/NOHWeb32/NOHperSubj/Chap4/NewbornIC.pdf

Around 2 million babies are born in the Philippines each year. The number of children aged 0 to four years old run up to around 10 million, and children aged five to 10 are another 10 million.

Newborns refer to infants during the first month of life. Infants are those that are still below one year old. On the other hand, children refer to the age group between one year old to less than 10 years old.

Newborns, Infants and Children

Congenital Anomaly

are a major cause of stillbirths and neonatal deaths, but they are perhaps even more important as causes of acute illness and long-term morbidity.

refer to structural defects, chromosomal abnormalities, metabolic errors and hereditary disease present at birth.

It may occur as an isolated defect or as multiple malformations.

Isolated congenital anomaly, is the structural defect, which can be traced down to one localized error in morphogenesis while multiple congenital malformations result from two or more different morphogenetic errors, which occur during development of individual.

CONGENITAL ANOMALIES

Nelson Textbook of Pediatrics, 18th ed 2007

Early recognition of anomalies is important for planning care; with some, such as tracheoesophageal fistula, diaphragmatic hernia, choanal atresia, and intestinal obstruction, immediate medical and surgical therapy is essential for survival.

Parents are likely to feel anxious and guilty on learning of the existence of a congenital anomaly and require sensitive counseling.



TABLE 1 -- Common Life-Threatening Congenital Anomalies

NAME MANIFESTATIONS

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

Pierre Robin syndrome

Micrognathia, cleft palate, airway obstruction

Diaphragmatic hernia Scaphoid abdomen, bowel sounds present in chest, respiratory distress

Tracheoesophageal fistula

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


CHARGE, coloboma of the eye, heart anomaly, choanal atresia, retardation, and genital and ear anomalies; VATER, vertebral defects, imperforate anus, tracheoesophageal fistula, and radial and renal dysplasia.

NAME MANIFESTATIONS

Intestinal obstruction: volvulus, duodenal atresia, ileal atresia

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

Gastroschisis, omphalocele

Polyhydramnios, intestinal obstruction

Renal agenesis, Potter syndrome

Oligohydramnios, anuria, pulmonary hypoplasia, pneumothorax

Neural tube defects: anencephalus, meningomyelocele

Polyhydramnios, elevated α-fetoprotein, decreased fetal activity

Ductal-dependent congenital heart disease

Cyanosis, hypotension, murmur



http://wps.prenhall.com/wps/media/objects/740/758036/congenital_anomalies.pdf

http://wps.prenhall.com/wps/media/objects/740/758036/congenital_anomalies.pdfANOTHER VIDEO

Prenatal Testing

The need to develop satisfactory therapies for gene defects is medically important, as is evident in the ff: There are approx. 3,000 different diseases which

are known to involve single defective genes. 33% of infant deaths are related to genetic causes Parent carriers of defective genes may have as

much as a 50% risk of generating offspring with a genetic defect

-Health Care Ethics 4th ed.

Chorionic Villi Sampling

It is a technique in prenatal testing in which a plastic catheter is inserted through the cervix to biopsy villi or hairlike projections in the placenta. The results of chromosome tests of these rapidly growing tissues are available in a few days.


Amniocentesis

It is a technique frequently employed in diagnosing the genetic and sexual characteristics of unborn infants.

It is the extraction of amniotic fluid from a pregnant woman (in the 15th week) to aid in the diagnosis of fetal abnormalities.


In “The Gospel of Life”, Pope John Paul II wrote: In view of the complexity of prenatal diagnostic

techniques, an accurate and systematic moral judgment is necessary.

MORALLY LICIT: When they do not involve disproportionate risks for the child and the mother, and are meant to make possible early therapy or even to favor a serene and informed acceptance of the child not yet born.

But since the possibilities of prenatal therapy are still limited today, it not infrequently happens that these techniques are used with eugenic intention which accepts selective abortion in order to prevent the birth of children affected by various types of anomalies. Such an attitude is shameful and utterly reprehensible, since it presumes to measure the value of a human life only within the parameters of “normality” and physical well-being, thus opening the way to legitimizing infanticide and euthanasia as well.

Genetic Testing is licit: if the motive is to identify diseases in order

to correct a defect or to prepare the parents The methods used are with the informed

consent of the parents and respect the life & integrity of the embryo and the mother without subjecting them to disproportionate risks.

-Bioethics for Students

Genetic Manipulation

Genetic Manipulation

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

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


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 Justice


Stewardship

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)


Stewardship

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.


Non-Maleficence

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

Known genetic characteristics may lead to discrimination.


Respect for human dignity

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.


Justice

The procedure is only available for the rich.


Borderline of Viability

Borderline of Viability time of birth of extremely premature babies who

are born alive at or before the gestational age of 25 weeks, six days Causes

spontaneous labour Delivered early to safeguard the health of the baby and/or

the mother

At these stages of gestation, the prospects of healthy survival are reduced, often necessitating critical care decisions after birth

Clinician’s Perspective on Resuscitation

The doctors will try to ascertain whether parents would want resuscitation or, if there is little chance of survival, they would prefer the baby to be given palliative care alone, allowing him or her to die without the stress and pain of attempted resuscitation and intensive care.

Maximizing the baby’s quality of life through relief from pain and stress is an important part of palliative care.


Where parents would prefer that the clinical team made the decision about whether or not to initiate intensive care, the clinicians should determine what constitutes appropriate care for that particular baby.

Where there has not been an opportunity to discuss a baby’s treatment with the mother (and where appropriate her partner) prior to the birth, the clinical team should consider offering full invasive intensive care until a baby’s condition and treatment can be discussed with the parents.


If the mother does not want their baby to be subjected to prolonged intensive care, or feel that they could not cope with a disabled child, or believe that they could easily get pregnant again, the neonatologist may be more likely to opt for palliative care for a baby born in poor condition.

If, on the other hand, a mother may not have another chance to have a pregnancy and she is willing to accept any outcome if the child survives, the doctor is likely to use all appropriate therapy to support the baby, even if the chances of survival without some level of disability are very low.

Ethical Issues

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

Critical Care Decisions in Fetal and Neonatal Medicine

Ethical Issues 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

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

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

Withhold or withdraw life sustaining medical treatment? Who decides

Parents Physician Infant Care Review Committees

DECISION MAKING

Parents are generally considered to have the moral authority to make decisions in their child’s best interests in all the circumstances of life, though not as if they owned them

They are often best placed to know what is in the interests of their child because they share a special bond that begins during pregnancy and develops over time

DECISION MAKING

Doctors have a responsibility to promote the best interests of the newborn baby and will be able to give a prediction of the outcome for the baby based on their knowledge and experience.

Other people, such as family members,

religious advisers or healthcare specialists may contribute advice.

Neonatal Issues

Should these infants receive or be denied of life-sustaining medical treatment?

What is the moral status of these infants with mental and physical disabilities? The moral status of an infant can be

established only after personhood has been defined

What makes a Newborn a Person?

Three Approaches Absolutist Subjectivist Procedural Compromise

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

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

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

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?

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

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

Proxy Consent

Informed 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

Elements of Free and Informed Consent

1. Information Presentation – 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.

Competency 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.

Civil Code of the Philippines

Patient’s Proxy Person designated when the patient is not

competent to make medical decisions himself/herself. pediatric patients severely ill patients

Selected from the patient’s family or by means of advanced directive. Basis: relative loves the patient thus make medical

decisions based on relative’s best interest.

Proxy Consent

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

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

Issues in Therapeutic Therapy

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

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

Issues in Non-Therapeutic Therapy

Nontherapeutic Research – results in knowledge that is beneficial to others but does not directly benefit the subject of research. Proxy consent not licit in experimentation,

even when risk is minimal. Principle of Human Dignity Extensive Interpretation

Neonatal Care

Withdrawal of life-sustaining medical treatment: Who decides?

1. Parents

2. Physician

3. Infant Care Review Committees

Parents

Presumed to be the appropriate decision-makers for their children

LOVE 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

THANK YOU!!!

beginning of life

Documents

isolated congenital

year old

heart anomaly

years old

structural defects

childrencongenital anomaly

nasogastric tube

vertebral defects