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An Introduction to Extremely Premature Babies
This note is intended to help parents who may have an extremely
premature baby born 22, 23 or 24 weeks into a pregnancy.
Please note that this information is from a doctor/ hospital's
point of view.
Although we understand that having an extremely premature baby
is one of the most difficult experiences imaginable, the tone of
this note is straightforward and dispassionate, with the goal to
be as clear as possible.
This note contains a lot of information. It can be hard to take
it all in with just one reading. This is especially true with
the inevitable stress that comes with being in this situation.
Also, some of the drugs often given to a mother in premature
labour may affect her ability to think clearly. For these
reasons, you may want to read this note more than once. You may
have to make one of the hardest decisions of your life based
partly on what you read here.
This note emphasizes the chances of an extremely premature
baby's survival and the chances of various degrees of permanent
handicaps for the babies who survive. Parents of extremely
premature babies must understand these things, because the law
and our society in general have decided that parents have the
right to choose whether or not intensive care is the best thing
for their extremely premature baby. Deciding whether or not to
choose intensive care for your baby is the "hardest decision"
mentioned in the previous paragraph.
The alternative to intensive care is hospice care, where the
emphasis is on comfort and being with loved ones, rather than on
curing disease. For an extremely premature baby, this usually
means being held by parents, being kept warm and, when
appropriate, being given medications for sedation and pain
relief. Beginning hospice care is often referred to as
"withdrawing intensive care" in this note (and elsewhere).
Most of this note is about the negative things that can result
from an extremely premature birth. The negatives are emphasized
because most people do not know about them. We assume you
already know the many positive things about the very existence
of a child, the things that make up every parent’s hopes for
their baby.
Before 22 and after 24 weeks
Babies born before 22 weeks into a pregnancy virtually never
survive. Therefore, we provide hospice care for such babies,
unless there is a significant chance the baby is really more
mature than we thought.
At 25 weeks and beyond, although much risk still remains, the
chances that a baby will survive and be healthy in the long run
are better. Therefore, once the 25 week point has been reached,
intensive care is given at least initially unless there are
special circumstances.
22 week babies
Nationwide, most 22 week babies are given hospice care. Very few
22 week babies have survived. Our estimate of the chance of a 22
week baby surviving with intensive care, 10%, really is just an
estimate, because we have not yet succeeded in sending a 22 week
baby home alive here despite several attempts. Most of those 22
week babies died after the brain was badly injured by severe
bleeding into the brain and intensive care was withdrawn.
Before we begin the intensive care of a 22 week baby, we want to
be as sure as possible that the baby's parents are fully aware
of the high odds against the survival of such a baby. Also,
little is known about the outcomes of such babies, except to
guess that the risk of handicaps is higher than it is at 23 and
24 weeks.
Survival at 23 weeks
Nationwide, many 23 week babies are given hospice care. However,
we have given intensive care to most, but certainly not all, 23
week babies born here since 1990. About 50% of 23 week babies
given intensive care here survive. About half of the deaths have
followed withdrawal of intensive care after severe bleeding into
the brain.
An individual baby's chance of surviving may be much different
from that 50% overall figure, however. These individual
differences are mostly due to four issues:
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the time into that week (a baby barely 23 weeks is less likely
to do well than a baby almost 24 weeks),
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the baby's gender (girls tend to do better than boys),
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multiple pregnancy (singletons tend to do better than individual
babies from multiple pregnancies), and
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whether there was time before birth to give the steroid (betamethasone,
also called Celestone) shots to the mother (which helps the
baby's chance of surviving and avoiding severe brain bleeding).
Depending on these factors, we might estimate an individual
baby's chances for survival to be anywhere from 25% to 75%.
Survival at 24 weeks
At 24 weeks, most babies are given intensive care nationwide,
but some are given hospice care. We have given intensive care
nearly all 24 week babies born here since 1990. Overall, about
75% of 24 week babies given intensive care here survive. As
noted in the last section, there are reasons that an individual
baby's chances may differ from the overall figure. Depending on
those same factors, we might guess an individual baby's chances
for survival to be anywhere from 50% to 90%.
Long term health and handicaps at 23 or 24 weeks:
"Quality of life"
It is important to keep in mind that there is much more to this
difficult situation than survival.
Most extremely premature babies who survive have at least some
degree of handicap. The problems related to the brain are by far
the most important, because brain injuries often affect what is
most human about us, and brain injuries cannot heal themselves.
The outcomes of babies who have gone home from the newborn
intensive care unit (ICU) are usually divided into four
categories, which will be described in the next four paragraphs.
At 23 and 24 weeks, each of these four types of outcomes is
nearly equally likely, so there is about a 25% chance your baby
will be in any one of the four outcome groups, presuming your
baby does survive. Please understand that some babies within
each group will not exactly match the description of that group.
Our intent here is to give you a realistic picture of the
spectrum of handicaps faced by extremely premature babies,
without going into all of the many possible outcomes.
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Children in the no handicap group have intelligence and physical
abilities within the normal range, and they perform normally in
school when they are older. Even in this group, however,
children may be physically small or need to wear glasses to see
well.
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Children in the mild handicap group have intelligence within the
normal range, although it is usually somewhat below average.
They also usually have some sort of problem that makes things
difficult for them in school. Attention deficit disorder is a
common example. Children with attention deficit disorder are
easily distracted, and may be hyperactive. Other problems found
in this group include learning disabilities, language problems,
difficulty with math, and social/emotional issues. Many children
in this group are also somewhat clumsy, but are able to do what
they need to do. Some of these children will need special
education in school.
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Children in the moderate handicap group have borderline
intelligence that falls between "low normal" and mildly mentally
retarded, and also often have mild cerebral palsy. The mild
cerebral palsy means these children have permanent difficulties
with muscle control (such as awkward walking or difficulty with
handwriting), need physical therapy, and usually begin to walk
much later than most children. Vision may be somewhat impaired,
even when using glasses. Most children in this group will need
special education in school. Many children in this group will
not be able to live independently as adults.
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Children in the severe handicap group are mentally retarded
and/or have severe cerebral palsy, usually to a degree that
keeps them from ever walking without assistance. Children in
this group also tend to have the most serious problems with
their vision. While blindness is quite rare, vision is often
impaired enough to be a significant problem, even with the best
possible glasses. Virtually all children in this group will need
special education in school, and most will not be able to live
independently as adults.
We all fear the extremely handicapped outcome, the child who
grows up unable to communicate, and perhaps not aware of what is
happening around him or her. Fortunately, even when there is
serious bleeding into the brain, such extreme outcomes are rare.
Most of the children in the severely handicapped group are
capable of carrying on at least a simple conversation.
The important point of this section is that long-term outcomes
are not simply a matter of being either perfectly normal or
extremely handicapped. On the contrary, the outcomes of
extremely premature babies cover a wide spectrum. Few will be
truly normal, but very few of the handicaps we see are as
serious as our worst fears.
Predicting outcomes for extremely premature babies as a group
An equal chance for each of the four outcome groups, as given
above, is the best guess we can make at this time. It is a guess
because, to really know how a child will do, we must wait until
that child is at least eight years old. It is only around that
age, when the child is working with letters and numbers and is
in a more complicated social setting, that we can finally begin
to estimate a child's adult potential with reasonably good
accuracy.
Because we must wait eight years to know how a child will do, we
are by necessity basing our guesses for the future outcomes of
babies born today on the current outcomes of babies born eight
or more years ago. However, newborn intensive care has changed a
great deal in the last eight years. Extremely premature babies
are surviving more often now than they did eight years ago and
before. It is tempting to assume that today’s survivors will
also have better outcomes than the survivors of years ago.
However, the trend over time has been that the percentage of
those extremely premature survivors who are handicapped to
varying degrees has remained fairly constant as their survival
has improved over the years. In other words, there are more
normal survivors now than years ago, but there are also more
handicapped survivors. It is likely that this trend will
continue, so our outcome estimates for today's babies will
probably be fairly accurate.
Predicting outcomes for individual babies
Of course, you do not want to know how other babies similar to
yours will do as a group. You want to know how your own baby (or
babies) will do. Unfortunately, our ability to predict how an
individual baby will do in the long run is rather poor. This
uncertainty is one the most difficult things about this whole
situation.
Babies can be vigorous and very healthy as fetuses and yet have
great problems after birth. This can happen because life outside
the womb has very different demands than life within the womb.
It is generally better when a baby is vigorous at birth, but
vigour at birth is still a poor predictor of the later health of
individual babies. Even extremely premature babies who need CPR
at birth have outcomes not much different from those who did not
need CPR.
The same is true for the overall health of a baby during the
time spent in the newborn ICU, with one exception that will be
discussed in a moment. It is generally better when a baby has
minimal difficulty with immature lungs, blood pressure,
infections, and the many other problems that can happen after an
extremely premature birth. However, there are too many
exceptions (in both directions) to rely on overall health to
predict the outcomes of individual babies.
One problem that does predict handicaps at least relatively well
is the problem of severe bleeding into the brain, which happens
to some extremely premature babies. There can be small amounts
of bleeding in the brain (called grade 1 or 2 bleeds) that have
little or no effect on a baby. On the other hand, severe
bleeding in the brain (called grade 3 or 4 bleeds) often cause
significant permanent handicaps.
When severe bleeding does happen, it almost always happens in
the first three days after birth. That is why we look at the
brain with ultrasound after the first three days. If no severe
bleeding is seen, that is a major hurdle successfully cleared.
If severe bleeding is seen, the chances for severe handicaps are
much greater. The likelihood of needing surgeries (and the
additional pain and inconvenience that goes with them) later for
hydrocephalus (excessive fluid accumulation within the brain) or
for complications of cerebral palsy also greatly increases if
severe bleeding occurs.
Even though the brain ultrasound is probably our best predictor
of permanent handicaps while a baby is in the newborn ICU, it is
still far from perfect. Some extremely premature babies who do
not have severe bleeding in the brain have severe handicaps
later in life. A few babies with severe bleeding manage to be
fairly close to normal later in life.
In general, we are better at predicting severe handicaps,
largely because most of those babies have severe bleeding in the
brain, or perhaps a rarer problem (called periventricular
leukomalacia) that shows up later during the hospitalization on
other brain ultrasound tests. However, we have no good way of
predicting which babies will be normal and which will have mild
or moderate handicaps.
Other medical issues
So far we have concentrated on survival and brain-related
problems, because those issues have the most permanent impact.
There are other health issues that must be mentioned. Infections
are not uncommon, and can cause a baby to become much sicker.
Some babies die from infections. The ventilators that help
babies breathe and keep them alive also damage the lungs. This
can lead to problems with wheezing or pneumonias through the
early childhood years or perhaps longer, and may require more
time in the hospital. Many extremely premature babies grow
poorly, have feeding problems, and/or have difficult
dispositions. Parenting an extremely premature baby can be a
difficult, frustrating experience.
Multiples: Twins, triplets, or more
Multiple pregnancies make this already difficult situation even
more complicated. For example, if one of a set of triplets is in
serious trouble before birth at this extremely premature stage,
do we do a c-section to try to save one baby? Doing so could
endanger the lives of the other two. On the other hand, the
death of one fetus can, in some circumstances, endanger the
health of the remaining fetus(es).
Extremely premature multiples, as individuals, appear to have a
somewhat lower chance of surviving than single babies. However,
the chance of one of your babies surviving may be better than
that of a single baby, but that is at the price of the lower
chance that all of your babies will survive.
Suffering
Clearly, no one would choose to be a patient in an intensive
care unit. It is a difficult experience at any age, although we
do everything we can to keep babies comfortable.
Extremely premature babies are generally kept heavily sedated
with morphine, which is also a potent painkiller, during the
first three days of life, so we feel they are comfortable during
this time. (We must admit that our ability to estimate how much
pain a baby is having is imperfect, but we do give enough
morphine to keep the babies very sleepy the great majority of
the time.) Most babies are then allowed to awaken so they can
breathe on their own without the ventilator.
Needle pokes are kept to a minimum by using long-term IVs and
arterial lines. Long term IVs can be left in for weeks, sparing
babies many pokes for standard IVs. Arterial lines also usually
last for weeks, if we need them for that long, and are used for
drawing blood samples, sparing babies many pokes in the elbow
for drawing blood. Most extremely premature babies begin their
stay in the ICU with an IV and an arterial line placed in the
umbilical cord's blood vessels. This is good from the comfort
point of view because the umbilical cord has no sensation at
all, so placing these devices is virtually painless.
When a hospital stay goes smoothly, the amount of suffering
experienced by a baby is relatively low. (We understand that the
words "relatively low" are not very comforting when we are
talking about your child's suffering.) Some complications that
can occur later on in the hospitalization, on the other hand,
may cause pain that is less manageable.
The effect on the family
There is always grief when a baby is born extremely prematurely
because, no matter how well things go thereafter, the dream of a
full term pregnancy and a big, healthy baby has been lost. As
with grief that follows the death of a loved one, overwhelming
emotions of all kinds are common. Please be aware that such
extreme emotions are a normal part of grieving.
It is almost impossible not to feel guilt about the birth of an
extremely premature baby. This is especially true for a mother,
who often feels the premature birth is her fault, no matter how
carefully she took care of herself and her pregnancy. In most
cases of premature birth there is no fault, just bad luck.
When children grow up to have serious handicaps, it is hard to
predict how the family will be affected. A seriously handicapped
child can be a cherished member of one family, while another
family may be torn apart by the experience. Other children in
the family may feel neglected because of the greater attention a
seriously handicapped child requires, but they may also learn
important lessons in compassion.
Having a child with many medical problems can also be a heavy
strain on the family budget. If expenses are high enough,
financial aid can be obtained, but this is a time-consuming
process for parents who are already pressed for time.
Even when things work out well in the long run, families can be
affected greatly by the experience of having an extremely
premature baby. Some parents experience something similar to the
post-traumatic stress disorder seen in veterans who experienced
extremely stressful combat situations. Some marriages fall apart
under the stress. Varying degrees of depression are not
uncommon, and may require treatment.
Breast milk
If you had not originally intended to breastfeed your baby, you
may wish to reconsider that decision due to your risk of giving
birth so prematurely.
There is some evidence that premature babies fed breast milk
have fewer brain-related problems later in life than do those
fed commercial formulas.
The intestines of extremely premature babies work rather poorly,
and can cause serious illness. Some premature babies die of this
intestinal illness (called necrotizing enterocolitis), while
others may need surgery. Babies fed breast milk are less likely
to develop this intestinal illness than are babies fed formula.
We strongly encourage you to use a breast pump so we can use
your milk for at least the first two months or so of your baby's
life. Both your obstetric nurses and the newborn ICU nurses can
help you with this. During this time, your milk can be given to
your baby through a tube that goes into the mouth and down to
the stomach. Tube feedings are necessary at first because of
poor swallowing ability. At about two months of age the risk of
intestinal disease is much less, so, if you wish, we can switch
to formula feedings around that time. This is also about the
time we begin to give some feedings by mouth instead of by
feeding tube.
Using a breast pump is a difficult process that is not always
successful. We will help you any way we can.
It is usually the ability to take all feedings by mouth that
determines when a baby is ready to go home. This usually occurs
shortly before the original due date.
Blood transfusions
Extremely premature babies need many blood transfusions during
their stay in the hospital. It is natural to worry about blood
transfusions, but the risk of complications from blood
transfusions is very small compared to the many other risks
faced by extremely premature babies.
Options
The first difficult choice is whether or not to have a c-section
if your baby is showing signs of being in serious trouble before
birth. A c-section could save your baby's life or minimize brain
injury. However, as with any baby born this early, the brain
could be injured or your baby could die later on. A c-section
this early in a pregnancy may mean that you will have to have
any future babies by c-section. A c-section done this early may
also add a small risk that your uterus could rupture in a future
pregnancy, which is dangerous for both your future baby and for
you. Your obstetrician can tell you if these latter two risks
could apply to you.
Once an extremely premature baby is born, we may provide either
intensive care or hospice care. This decision is best made
before birth, because the intensive care of an extremely
premature baby should begin immediately after birth, to minimize
the chance of brain injury. There are no reliable ways to
predict a baby's long term health at the time of birth, unless
the baby's maturity is clearly much different from what we had
thought before birth.
Beginning intensive care does not mean it must be continued no
matter what happens. For example, we can reconsider continuing
intensive care after the first three days, when the breathing
and blood pressure problems are usually resolving and the first
brain ultrasound has been done. If things are going well, it is
reasonable to continue intensive care. If there is severe
bleeding into the brain, on the other hand, hospice care might
be considered.
If something serious happens later in the hospital stay, we may
approach you again about continuing intensive care. That does
not mean that we think hospice care is the right thing to do. It
simply means that the outlook has significantly changed since
our prior discussions.
Please do not hesitate to discuss your baby's care with us at
any time, whether there has been a major change or not. Just ask
your baby’s nurse if you wish such a meeting. Issues we might
discuss include the following:
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What are my baby’s chances for survival, various degrees of
handicap, and long-term health problems now?
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What medical problems are affecting my baby now?
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How can I get more information about my baby’s problems?
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How are those problems being treated?
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What side effects could those treatments have?
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Are there reasonable alternative treatments we could consider?
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How can I get more involved in my baby’s care?
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What can I do to best nurture my baby?
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How do I find emotional or spiritual support?
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Can the newborn ICU’s social worker help me with transportation,
local housing, financial aid, or other practical problems while
my baby is in the newborn ICU?
What will be done if there is no parental decision about
intensive care?
For a variety of reasons, we sometimes do not have a clear
parental decision about intensive care when a baby is born. In
that case, we will usually provide intensive care to 23 and 24
week babies and hospice care to 22 week babies. This is done
because, in our experience, those are the wishes of most people.
Conclusion
We have reviewed the chances for survival and varying degrees of
handicaps for extremely premature babies. The emphasis has been
on long term outcomes, because that is what is most important
when choosing between intensive care and hospice care.
Perhaps it all comes down to this: If you were in your baby’s
(or babies’) place, would you want a chance at life despite the
medical problems, the suffering, and the likelihood of at least
some degree of handicap, or would you feel that is a fate worse
than death? We cannot know what a baby would want to do, but we
do know that people eventually tend to share their parents’
views about such things. Therefore, it is a baby’s parents who
are most likely to make the same decision that a baby would make
if he or she were able to do so.
The choice is clear to some parents, to keep their baby alive if
possible and deal with whatever problems may come. Other parents
just as clearly feel they cannot put their child through those
same problems. Both views are held by well-informed, reasonable,
loving parents. Many parents see both views clearly, and find
this an excruciatingly difficult decision to make. A mother and
a father may have different views, an especially difficult
situation with no easy solution.
At the risk of oversimplifying this difficult situation, there
are basically three options here, at least for the first few
days.
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If the risk of mild and moderate handicaps seems too great, then
perhaps hospice care should be provided at birth.
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If the risk of handicaps seems acceptable, but you also want to
try to minimize the risk of severe handicap and minimize
discomfort, then perhaps your baby should be given intensive
care and heavily sedated for the first three days and then the
decision can be made.
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If the risk of severe handicap is acceptable, then perhaps
intensive care should be continued unless the situation becomes
hopeless.
We are perfectly willing to talk with you at length to clarify
and expand on the points made in this note. Your pregnancy may
have special circumstances not covered here. We can talk about
emotional issues that are not covered in this intentionally
dispassionate note. If you wish, we can try to put you in touch
with parents who have been in the situation you are in now. Ask
your nurse to contact us if we can offer any help. We are here
to help you and support you in any way we can.
We hope that your pregnancy can be safely prolonged to a point
that is safer for your baby, to 25 weeks or even to 30 weeks.
Even that best outcome is difficult, however. If only there was
an easier way out of this frightening situation!
Resource:
http://hometown.aol.com/dderleth/extreme.html
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