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By: Group 2

Cruz, K., Cruz, K.O,


Cruz, R.
Cudal, ., Dancel, J.,
Dans, K.,
Daquilanea, M., De
Aquino A.

PEDIATRIC ISSUES
ISSUES BWETWEEN THE BEGINNING and END OF LIFE
• branch of medicine
dedicated to the PEDIATRICS
attainment of the best
– Physical
– emotional Pediatrics was
– social health founded with the
idea that children
• For:
have special
– infants developmental and
– children health-care needs
– and young people
.
PEDIATRICS
Neonatologists
– Pediatricians and Surgeons specialize in
pediatric surgery
– specialize in the care of premature babies,
critically
– ill children, and those with congenital
malformations.
Different ProxyConsent 
Congenital Neonatal Issues
Anomalies Ethical Issues
– IntrauterineScreeni Social/Medical Issues
ng 
– NewbornScreening  PrinciplesInvolved
 
– Congenital and
Genetic
INTRAUTERINE SCREENING
c/o Karen
NEWBORN SCREENING
Genetic and Congenital
Impairments
c/o Ten
2 Kinds of Errors

• Genetic errors
– Occurrence of mutation in the coding of DNA
or presence of inherited defective gene
• Congenital errors
– Errors that result during the developmental
process
– Impairment is not in the original blueprint but
maybe from genetic damage or imcorrect
reading of the blueprint
Factors affecting fetal development
• Radiation (x-rays)
• Drugs (thalidomide)
• Chemicals (mercury)
• Nutritional deficiencies
• Biological diseases (viruses or spirochetes)
Genetic and Congenital Errors
• Genetic impairments are inherited
• Congenital impairments are not inherited and
cannot be passed on
• Some genetic diseases can be diagnosed
before birth
Diagnosing before birth
• Blood test for presence of alphafetoprotein
can indicate likelihood of neural tube defects
characteristic of spina bifida
• Ultrasound can be used to confirm or detect
developmental abnormalities
• Amniocentesis, procedure for drawing fluid
from uterus and cells from developing
embryo are examined for genetic
abnormalities.
Down Syndrome
• Genetic disease identified in 1886 by english
physician J.L.H. Down
• Results from the presence an additional
chromosome from the 23-pairs
• Also called Trisomy-21 because instead of
the 21st pair of chromosome, the affected
person has a 21st triple.
Effects of Down Syndrome
• Child is born with retardation and various
physical abnormalities (broad skull, large
tongue and upward slant of eyelids)
• Upward slant of eyelids led to the name
“mongolism”
• There is no cure for down syndrome, no way
to compensate for the abnormality in the
development
Occurrence of Down Syndrome
• Occurs in 1 of every 1000 births
• Occurs most frequently in woman over the
age of 35
• In 1984 researchers discovered an extra
copy of a segment known as “nucleolar
organizing region”
• Families in which either parent has the
abnormality are 20 times more likely to have
an affected child
Down Syndrome affected
characteristics
• Usually carries a 50-80 IQ
• Usually requires the care and help of others
• Can be taught easy tasks
• Usually seem to be happy people
Spina Bifida
• General name for birth defects that involves
an opening in the spine
• Spine of the child fails to fuse properly and
often the open vertebrae permit the
membrane covering the spinal cord to
protrude to the outside
• Membrane forms a bulging, thin sac that
contains spinal fluid and nerve tissue
• When nerve tissue is present, condition is
called “myelomeningocele”, a severe form of
spina bifida
Treatment of Spina Bifida
• Spina bifida must often be treated surgically
• Opening in the spine must be closed up
• Sac is removed and nerve tissue inside is
placed within the spinal canal
• Normal skin is grafted over the area
• Danger of infection of the meninges
(meningitis) is great, thus antibiotics is also
necessary
Treatment of Spina Bifida
• Child is also likely to require orthopedic
operations to attempt to correct the
deformities of the legs and feet because of
muscle weakness and lack of muscular
control due to nerve damage
• Bones of such children are thin and brittle,
fractures are frequent
Effects of Spina Bifida
• Child is virtually paralyzed to some extent, usually below
waist
• Because of nerve damage, child will have limited sensation in
the lower part of the body
• No control over his bladder of bowels
• Lack of bladder control may result in infection of the bladder,
urinary tract, and kidneys, because undischarged urine may
serve as breeding place for microorganisms
Occurrence of Spina Bifida
• Occurs between one and ten per 1000 births
• Rate in white families of low socio-economic
status is 3 times higher than that in families of
higher socio-economic status
• Rate in black population is less than half of that
in the white population
• Women taking multivitamins during pregnancy
ran less than half the risk of having an affected
child
• Spina bifida is almost always accompanied by
Hydrocephaly
• Literally means “water on the brain”
• When the flow of fluid through the spinal
canal is blocked, the cerebrospinal fluid
produced within the brain cannot escape
• Pressure buildup from the fluid can cause
brain damage, and when not released, the
child will die
• It is frequently a result of spina bifida, it may
also have several other causes and can
Treatment of Hydrocephaly
• Treatment requires surgically inserting a thin
tube, or shunt, to drain the fluid from the
skull to the heart or abdomen where it can
be absorbed.
• Operation can save the baby’s life but
physical and mental damage is frequent
• If hydrocephaly comes with spina bifida, it is
always treated first
Anencephaly
• Literally means “without brain”
• Defect is related to spina bifida, for in some
forms the bones of the skull are not
completely formed and leave an opening
through which brain material bulges to the
outside
• Death is a virtual certainty
• Individuals is so severely retarded that he
Esophageal Atresia
• Atresia is the closing of a normal opening or
canal
• Esophagus is the muscular tube that extends
from the back of the throat to the stomach
• Sometimes the tube forms without an
opening, or it does not completely develop
so that it does not extend to the stomach
Treating Esophageal Atresia
• Surgery is needed to correct the condition
• Chances of success in such surgery is very
high
Duodenal Atresia
• Duodenum is the upper part of the small
intestine
• Food from the stomach empties into it
• When the duodenum is closed off, food
cannot pass through and be digested
• Surgery can repair this condition and is
successful in most cases
Occurrence of all defects
• Estimated 6% of all live births, some 200,000 infants
a year require intensive neonatal care
• Afflictions presented here are those that are most
often the source of major moral problems
• Those correctable by standard surgical procedures
present no special moral difficulties but when paired
with other impairments such as Down Syndrome,
they become important factors in moral deliberations
TREATMENT
c/o IVAN
PROXY CONSENT
c/o Chub
Issues Between the Beginning of Life and Death
ETHICAL
c/o Kunny
SOCIAL and MEDICAL ISSUES
Treating or
Terminating
Dilemma of extreme Prematurity
The more premature an infant,the
lower birth weight, the more likely it is
the infant to die soon after birth or be
severely physically and mentally
impaired.
Extremely premature neonates are
fetal infants
The cost of keeping alive = $3000/day
“The even most defective
“The suffering of the infant, the anguish newborn is a human person.
of the parents and family, the monetary Defective newborn should
cost of saving the life of such infant is received care of the same
greater than the social and personal type provided for a normal
benefits that can be expected. Such a infant. It would be immoral
child should not be allowed to live, and it to kill the child or to cause
should be killed as painlessly as possible its death by withholding all
to minimize its suffering” care”

“The infant does not threaten our


own existence, and we have no “Although we have a prima
grounds for killing them. But we facie duty to preserve the
should allow the child to die. child’s life, our actual duty
is to allow it to die”
Imaginely put ourseleves in the place
of the infant, we might express our
autonomy and rationality by choosing
to refuse treatment that would
prolong a painful hopeless life.”
JOHN A. ROBERTSON
Defends a conservative natural
law position critisizing two
arguments in favor of
withholding “necessary but
ordinary” medical care from
MICHAEL TOOLEY
impaired infants Infants are not persons
Rejected the claim that “infants On the contrary there is no
are not persons” arbitrary consideration that
”We have no obligation to requires us to protect the
treat defective newborns past realization on conceptual
when the cost of doing so capablity but not its potential
greatly outweighs the realization
benefits” (a utilitarian
argument)
Life itself may be of sufficient
worth to an impaired person
to offset his/her suffering.

Examination of Arguments in Favor of Withholding Ordinary


Medical Care from Defective Infants, John A. Roberson
permits

VES
C T I
SP E
PER
good death (medical Perspective)
• it doesn't take fancy techniques
• you just need to be
As a physician, – sincere and patient and interested.
YOU can't – Listen more and talk less.
always make
those things
– Try asking something like, "Knowing that all of us
happen. But have to think about dying at some point, what
YOU can help would be a good death for you?“
the dying an affirmation of love
person get
completion of important work
ready-and in
this way, last visit with an important person.
contribute to a
death that is
decent.
What you need to understand to care for the dying

• The patient's story - including how that person has


viewed her life, the other persons important to her, and
how she could bring her life to a close in a way that would
be true to herself.
• The body - which covers the biomedical understanding of
disease, and what limits and possibilities exist for that
person.
• The medical care system available for this particular
patient - knowing how you can make the system work for
the patient, as well as the relevant law and ethics.
• Understand yourself - because you, as a physician, can
be an instrument of healing, or an instrument that does
damage.
Physicians Dealing with their own Feelings

• It helps to learn your strengths and


weaknesses, and to actively seek
whatever will nurture you - in or out of
medicine.
• A strategy of detachment may not serve
you well in the long run. There are indeed
rewards for physicians who care for the
dying, but as a Zen master once
observed of a bingo game, "you must
be present to win."
Neonatal ICU Issues
"Neonatal intensive care is
responsible for the survival of a
significant number of infants who
formerly would not have survived. "Neonatal intensive is a good
This increased survival has been example of medicine out of
accomplished with an acceptable control. There is
level of burden and without inappropriate use of
substantially increasing the technology by health care
population of handicapped children." professional who are out of
   - A touch with patients and their
proponent families. The benefits of
increases survival of high
risk infants are outweighed
by the associated burdens."
  - An opponent
justification for the existence of neonatal intensive
care units

(University of Washington NICU Data Base)


*Gest Age in Weeks Added Arbitrarily Assuming Infants +- AGA at Birth
Data source: National Center for Health Statistics
Sample case: NICU

M.S. is a married 35-year-old pregnant childless


woman who has lost four previous pregnancies
between 16 and 23 weeks gestation. She
currently has reached 23 weeks and 3 days of
gestation, her fetus is seemingly healthy, and
has an estimated weight of 550 grams (+/-1.2
lbs). She has ruptured her bag of waters and is
now having labor that seems unstoppable with
tocolytics. Delivery seems inevitable. What are
the management options and who decides what
form of care should be instituted following
delivery?
• B.R. is a term female infant from an unexpected
pregnancy. She has Down syndrome (Trisomy
21) and also has a complex cardiac lesion that
will require at least two major surgical
procedures during early infancy for her to have a
chance to survive beyond childhood. B.R.'s
parents, ages 44 and 45, have three other
children, all in college. They have considerable
ambivalence as to what to do: continue to
pursue potentially beneficial though burdensome
and costly treatments, or forego such treatments
in favor of a more conservative approach. What
are the issues involved?
The duty to treat a newborn baby

• If there is doubt about a baby’s future prognosis,


there is a strong presumption in favour of
treatment prolonging a baby’s life
Whether the life of this child is demonstrably going to be so awful that in
effect the child must be condemned to die or whether the life of this child
is still so imponderable that it would be wrong for her to be condemned to
die
Considerable weight...must be attached to the prolongation of life
there will be cases in because the individual human instinct and desire to survive is
which...it is not in the strong and must be presumed to be strong in the patient. But it is
interests of the child to not absolute, nor necessarily decisive, and may be outweighed if
subject it to treatment the pleasures and the quality of life are sufficiently small and the
which will cause pain and suffering or other burdens of living are sufficiently great.
increased suffering and
produce no
commensurate benefit, it is settled law that the court’s prime and paramount
giving the fullest possible consideration must be the best interests of the child. This is
weight to the child’s and easily said but not so easily applied. What it does involve is
mankind’s desire to that the views of parents, although they should be heeded and
survive weighed, cannot prevail over the court’s view...of best interests
Withholding or withdrawing treatment

• case by case basis


• Decisions to withhold or withdraw
treatment made consensually by a baby’s
parents and doctors are lawful providing
that the decisions are made in the best
interests of the baby.
PRINCIPLES INVOLVED
APPROACH TO DIFFERENT
CASES

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