Seth's Journal |
Email Tim and Suzanne |
At the
direction on of Tim and Suzanne Penziner, this page is being created
for the family and friends of Seth Rodney Penziner. It will serve as
your single point of information on the current medical challenges Seth
is facing and hopefully allow you to gain a better understanding of
"what's going on".As
you read through this, you may be a bit overwhelmed with some of the
stuff our little guy is going through (and that's ok, cause we are too!).
Tim and
Suzanne ask that you please take some time to digest this information
before you try to reach out to them. Your understanding, support, friendship
and love are all welcome. Sympathy is not welcome. As new parents,
they are taking this situation day-by-day.
Your understanding that they may not be able (or want) to talk with
people or respond to emails in a timely fashion (if at all) is greatly
appreciated :)
Overview
of Seth's Medical Condition (updated:
04/27/2006)
On September
12, 2005 at 8:44 PM ET Seth Rodney Penziner was brought into this world
via an emergency c-section. This was done because the placenta (which
'feeds' the baby) was shutting down and cutting off nutrients to the
baby. If left in the womb, Seth would have died. Due to medical intervention,
he was brought into this world.
Seth was
born 6 weeks premature. A premature baby always has it's own challenges
to deal with and Seth is no different in that arena. We'll try and cover
each of the major issues he's facing due to being a 'premie' and also
talk about a birth defect that Seth has been diagnosed with.
Seth was
initially at risk, but never contracted
Necrotizing Enterocolitis (NEC).
Issue:
Patent Ductus Arteriousus (PDA)
Layman's Terms: A blood vessel that normally closes
off after birth has not closed.
Treatment/Status: Seth
underwent surgery on 9/16/05 to address this issue. The surgery was
successful!
Details: What
is a Patent Ductus Arteriousus (PDA)? From WebMD,
here is an explanation:
"The
patent ductus arteriosus (PDA) is a special blood vessel that we all
have as babies in our mother's uterus. The ductus is responsible for
transporting blood from the right side of the heart, bypassing the
nonfunctioning lungs of the baby, and putting it directly into the
aorta for circulation to the baby's tissues and organs. This mechanism
is essential for survival while the baby is in the uterus. However,
shortly after birth, it is important for the ductus to close, which
then directs blood to the now functioning lungs for oxygenation. If
this closure doesn't occur, some unoxygenated blood gets sent to the
lungs like its supposed to, and some unoxygenated blood gets pumped
directly into the aorta." ~WebMD
The actual
procedure that Seth underwent on 9/16 was called a PDA Ligation and
it took place bedside (i.e. not in an operation room). The surgeon went
in via the side of the chest wall, between the ribs. From there he was
able to reach and clamp off the PDA, thereby preventing blood and fluid
from going back into his lungs. A breathing tube was be inserted into
his chest to help ensure he gets enough oxygen and he was put on a ventilator.
The breathing tube and use of the ventilator stopped after only one
day.
Issue:
Partial Atrioventricular Canal Defect
Layman's Terms: A heart defect in which the inner chambers
of the heart have not formed properly
Treatment: Seth underwent
surgery on 4/24/06 to address this issue. The surgery was successful!
Details: From WebMD:
"Atrioventricular
septal defect (ASVD) is a general term for a group of rare heart defects
that are present at birth (congenital). Infants with ASVDs have improperly
developed atrial and ventricular septa and adjoining valves.
The normal
heart has four chambers. The two upper chambers, known as atria, are
separated from each other by a fibrous partition called the atrial
septum. The two lower chambers, known as ventricles, are separated
from each other by the ventricular septum. Valves (e.g., mitral and
tricuspid) connect the atria (left and right) to their respective
ventricles. The valves allow for blood to be pumped through the chambers.
Blood travels from the right ventricle through the pulmonary artery
to the lungs where it receives oxygen. The blood returns to the heart
through pulmonary veins and enters the left ventricle. The left ventricle
sends the now oxygen-filled blood into the main artery of the body
(aorta). The aorta sends the blood throughout the body.
The parts
of the heart described above are formed from an embryonic structure
called the endocardial cushions. In individuals with ASVD there is
some combination of malformation of these parts of the heart. They
may include a hole in the atrial septum, a hole in the ventricular
septum, and/or abnormalities of the mitral and triscupid valves. ASVD
may be classified as one of three forms: an incomplete (or partial)
ASVD (atrial septal defect primum); a transitional form (atrial septal
defect and small ventricular septal defect); or a more severe or complete
form (large atrial and ventricular defects).
The symptoms
of ASVD vary greatly and depend on the severity of the malformations
(e.g., valve leakage between ventricles and ventricular size)"
Issue:
Necrotizing Enterocolitis (NEC)
Layman's Terms: An infection and inflammation of the
lining of the intestines. It is the most common type of intestinal disorder
experienced by premature infants.
Treatment: Depending on the severity it can be treated
either through medications (antibiotics) or by surgery in more severe
cases.
Details:
Reminder:
Seth has not been diagnosed with NEC, but he remains at a high risk
for contracting it. On 9/19 he will start feeding on breast milk (in
small amounts). Once he starts this and begins to process the food the
doctors will have a better understanding of how he's doing. UPDATE:
As of 10/29, Seth seems to be doing well and is not showing signs of
NEC. This condition can still present itself so he is being closely
monitored.
Necrotizing
Enterocolitis (NEC). From WebMD:
"Necrotizing
enterocolitis (NEC) is infection and inflammation of the lining of
the intestines that affects some newborns, usually those born prematurely.
It can be mild, moderate, or severe, leading to bowel obstruction
and tissue death (necrosis). While its severe form can be life-threatening,
most newborns who develop NEC survive with few problems.
What
causes NEC?
The cause
of NEC is not clear. It is believed to occur from a combination of
factors, including premature birth and immature digestive and immune
systems. Digestive system problems may be caused by premature birth
or complications during pregnancy or delivery. These problems can
lead to decreased or blocked blood and oxygen supply to the newborn's
intestines.
What
puts a child at risk for NEC?
Being
born prematurely and with low birth weight puts an infant at risk
for NEC.
Other
possible risk factors (which pertain to Seth specifically)
include:
- Being
exposed to bacteria. A newborn with intestinal damage is more susceptible
to infection.
- Having
patent ductus arteriosis (PDA), a congenital heart defect."
(Seth has been diagnosed with this)
How
is NEC treated?
Depending
on the severity, NEC can be treated via medication or in severe cases,
via surgery.
Issue:
Down Syndrome
Layman's Terms: "People with Down syndrome have
an extra or irregular chromosome in some or all of their body's cells.
The chromosomal abnormalities impair physical and mental development.
Most people with Down syndrome have distinctive physical features and
mild to moderate below-normal intelligence." ~WebMD
Treatment: There is no cure for Down Syndrome. Is is
a life long condition
Details: As
a lifelong condition, down syndrome will be very challenging for Seth,
his family and friends to initially deal with. Though lots of love,
effort, and special care, there is a good chance that Seth will end
up being a contributing member to society and the world around him.
Didn't
Suzanne get tested for down syndrome during her pregnancy?
Suzanne underwent a triple screen blood test. This test measures levels
of three substances in the mother's blood that indicate the likelihood
that a fetus will be born with Down syndrome. Sometimes the tests erroneously
indicate a fetus has Down syndrome (false-positive) or fail to detect
the condition (false-negative). Suzanne's test did not indicate Down
Syndrome and therefore had a false-negative result.
Both Amniocentesis
and Chorionic villus sampling are both tests which can be done during
pregnancy. Because they increase the chance of causing a miscarriage,
they are generally no recommended unless the mother is considered to
be at high risk for a child with down syndrome. Suzanne was not considered
to be at a high risk.
The following
information is from the March
of Dimes site:
"What
is Down syndrome?
Down syndrome is a disorder that includes a combination of birth defects;
among them, some degree of mental retardation, characteristic facial
features and, often, heart defects, increased infections, problems with
vision and hearing, and other health problems. The severity of all of
these problems varies greatly among affected individuals. Down syndrome
is one of the most common genetic birth defects, affecting approximately
one in 800 to 1,000 babies. It generally is caused by an extra chromosome,
the structures in cells that contain the genetic information (genes).
According
to the National Down Syndrome Society, there are approximately 350,000
individuals with Down syndrome in this country. Life expectancy among
adults with Down syndrome is about 55 years, though life span varies
depending on the individual and his or her medical condition.
What
causes Down syndrome?
Normally, each egg and sperm cell contains 23 chromosomes. The union
of these creates 23 pairs, or 46 chromosomes in total. Sometimes, an
accident occurs when an egg or sperm cell is forming, causing it to
have an extra chromosome number 21. When this cell contributes the extra
chromosome 21 to the embryo, Down syndrome results. All of the features
and birth defects associated with Down syndrome result from having this
extra chromosome 21 in each of the body's cells. Down syndrome also
is called trisomy 21 because of the presence of three number 21 chromosomes.
What
health problems might a child with Down syndrome have?
- Almost
half of babies with Down syndrome have heart defects.
- About
10 percent of babies with Down syndrome are born with intestinal malformations
that require surgery.
- More
than 50 percent have some visual or hearing impairment. Common visual
problems include crossed eyes (amblyopia), near- or far-sightedness
and cataracts. Most can be improved with glasses, surgery or other
treatments.
- Children
with Down syndrome may have hearing loss due to fluid in the middle
ear, a nerve defect or both.
- Children
with Down syndrome tend to have many colds and ear infections, as
well as bronchitis and pneumonia.
What
does a child with Down syndrome look like?
A child with Down syndrome may have eyes that slant upward and small
ears that may fold over a little at the top. His/her mouth may be small,
making the tongue appear large. His/her nose may also be small, with
a flattened nasal bridge. Some babies with Down syndrome have short
necks and small hands with short fingers and, due to less muscle tone,
appear somewhat "floppy."
The child
or adult with Down syndrome is often short and has unusual looseness
of the joints. Most children with Down syndrome will have some, but
not all, of these features.
How
serious is the mental retardation?
The degree of mental retardation varies widely, from mild to moderate
to severe. Most fall within the mild to moderate range, and studies
suggest that, with proper intervention, fewer than 10 percent will have
severe mental retardation. There is no way to predict the mental development
of a child with Down syndrome based upon physical features.
What
can a child with Down syndrome do?
Children with Down syndrome usually can do most things that any young
child can do, such as walking, talking, dressing and being toilet-trained.
However, they generally start learning these things later than other
children.
The exact
age that these developmental milestones will be achieved cannot be predicted.
However, early intervention programs beginning in infancy can help these
children achieve their developmental milestones sooner.
Can
a child with Down syndrome go to school?
Yes. There are special programs beginning in the preschool years to
help children with Down syndrome develop skills as fully as possible.
Along with benefiting from early intervention and special education,
many children are integrated in the regular classroom. The outlook for
these children is far brighter than it once was. More mildly affected
children can learn to read and write and participate in diverse childhood
activities both at school and in their neighborhoods.
While there
are special work programs designed for adults with Down syndrome, many
people with the disorder can hold regular jobs. Today, an increasing
number of adults with Down syndrome live semi-independently in community
group homes where they take care of themselves, participate in household
chores, develop friendships, partake in leisure activities and work
in their communities.
Can
Down syndrome be cured or prevented?
There is no cure for Down syndrome.
Can
Down syndrome be diagnosed before the child is born?
Yes. Prenatal testing using amniocentesis or a newer test called chorionic
villus sampling can diagnose or, far more likely, rule out Down syndrome.
As both procedures carry a small risk of infection and/or miscarriage,
doctors generally offer them only to women at increased risk of having
a baby with chromosomal or certain other birth defects.
A doctor
may suggest amniocentesis if a woman receives an abnormal result on
a blood test (often called the triple screen) done around the 16th week
of pregnancy. However, this blood test does not provide a conclusive
diagnosis: it simply means that additional tests such as amniocentesis
should be considered. Ultrasound can also be used to detect many cases
of Down syndrome." ~ March
of Dimes
Additional
Information:
I
will post additional updates as directed by Tim and Suzanne.
Click
here to return to "Seth's Journal"
~
Scott "Penz" Penziner a.k.a. Uncle Penz :) |
