At times, parents of premature babies must make difficult decisions. To make matters worse, these decisions often must be
made quickly. Parents may have a limited understanding of the total situation and are often under emotional, financial, and
physical duress.
Although in many ways decisions are ultimately left to the parents, decisions are based on information that comes from medical
staff. Understanding where medical staff is coming from, so to speak, is important for parents when making decisions.
The doctor’s perspective
All the staff at the NICU do their utmost to make every premature baby well. It is their desire to see premature babies get
healthy, be discharged from the hospital, and grow to be thriving children. The entire facility is designed to make this happen
as much as possible.
At the same time, not all premature babies in the NICU will survive. Some who do may have severely disabling conditions. Often,
with this knowledge at hand, doctors and nurses at the NICU must balance the hope that the premature baby will get better
with the probability that the baby will not get better.
Although every premature baby is different, statistics play a part in finding that balance. In an attempt to make the best
of bad situations, doctors will want to preserve hope while at the same time keeping an understanding of the reality of a
baby’s situation. This is not easy to do: not for parents nor for staff in the NICU.
Initial reactions
Very few parents expect their baby to be born prematurely. Initial reactions to a premature birth vary, but are often highly
charged and emotional. Some parents react with anger: they have done everything “right” during the pregnancy but they still
find themselves in a difficult position, with their premature baby facing grave disabilities or even death. These emotions
should be acknowledged. Some parents direct their anger at the NICU staff and, while this may be understandable given the
circumstances, it is not very productive.
Almost every NICU will have a staff member trained to help parents get over their initial shock and help them direct their
energies to something more positive, no matter what the situation. If you are having trouble coping, don’t wait for someone
to ask you if you need help; just ask. Having a premature baby in the NICU is not easy and no one expects parents to breeze
through the experience. The staff of the NICU, while sympathetic to a parent’s distress, have seen it before and have helped
many parents before. Again, don’t wait to get support; directing your efforts in a positive way will help everyone involved:
your baby, you, and the professionals charged with taking care of your baby.
One certain thing: uncertainty
Following the parents’ initial reaction, the realities and the facts of their premature baby’s condition can be explained.
Parents should become as informed and knowledgeable about the situation as possible. Expectations about the course of events
should be discussed with NICU staff as should the limits of what is medically and biologically possible.
Medical people almost never speak in absolutes, which is usually what a parent wants to hear. Will my baby get over this and
thrive? Will my baby live? Will my baby be disabled in some way? Although it would be reassuring to know the answer to these
questions with absolute certainty, even if the answer is negative in some way, the doctors familiar with your baby’s case
will likely only be able to answer at best with probabilities. For example, in the large scheme of things, doctors know that
premature babies born at 26 weeks have about a 50% survival rate and that of those that do survive, many will have severe
disabilities.
While the statistics address the population of premature babies of this age as a whole, they do not address any premature
baby in particular. In other words, a doctor at the NICU cannot look at a premature baby born at 26 weeks and know what the
long-term outcome will be for that particular baby. At the same time, the statistics cannot be ignored, and well trained staff
who have seen and treated many premature babies are sometimes capable of getting a sense of the course of a baby’s condition.
Because this is the way in which doctors think and communicate, parents who are looking for absolute answers may get frustrated
during what is already a difficult time.
Unfortunately, there is not really a way around this. As much as they would like to answer questions and predict outcomes
with certainty, doctors and medical people in general understand that there are no absolutes. Sometimes a premature baby who
appears to be well and progressing will suddenly and unexpectedly have a turn for the worse. Conversely, a baby who is not
expected to do well can have a full recovery. While treatment in general will improve outcomes, the way in which outcomes
are determined can go beyond the best efforts of the NICU and parents.
Probability and hope
When some parents are faced with a difficult situation in the NICU, understandably they hang on to the smallest hope. If doctors
estimate a very low probability of a positive outcome for a premature baby in their care, parents often hold on to that low
probability. While the staff in the NICU do not want to eliminate hope, they will encourage parents to have their hope framed
within reality. There are several reasons parents may be encouraged in this manner. First, hope framed within reality helps
parents prepare for the worst and may possibly encourage them to immediately make the best of a bad situation. Second, unrealistic
hope can motivate parents to feel that they must do everything medically possible regardless of the situation. Again, this
is understandable but not necessarily helpful to anyone, including their baby. For some parents, a desire to do something
no matter what is an expression of love for their premature baby and a guard against future guilt: they fear that if all possible
measures have not been taken and their baby has a bad outcome, they will not be able to live with themselves.
As one can imagine, decision making within this context can be very difficult indeed. The challenge is to consider what is
in the baby’s best interest and to get an understanding of what the long-term implications are for the baby, the parents,
and the rest of the family. Decisions, whether large or small, are best made without the influence of guilt or an unrealistic
evaluation of the premature baby’s condition and probable outcome.
Getting to this point may not be easy and again, there are trained staff in the NICU to help parents not only understand the
medical situation but the wider implications that situation is likely to have.
