The
NICU, Loss and Grief
by Donna Bottomley, M.S.W., R.S.W.
Although having a baby is generally a joyful, exciting event. Having
a baby who, as a result of prematurity, has to be immediately transferred
to a Neonatal Intensive Care Unit (NICU) is a less positive experience.
In fact, it is an experience frought with grief and loss, feelings not
normally associated with childbirth, and often not recognized by those
not directly affected. The following article will outline some of the
issues surrounding this experience and provide support references to
help you through this difficult time.
Feelings of loss often begin with the recognition that
one's pregnancy will not reach full-term. Mothers often feel cheated
of the experience of a "normal" pregnancy and of not delivering a full-term
baby. Often, these parents mourn the loss of "what might have been"
(i.e. the full-term pregnancy, the discharge from hospital 1-3 days
after delivery, the sense of contentment and completion of a job well
done). Moms particularly mourn the loss of not being able to bring baby
home with them after delivery. It is not unusual to feel angry, powerless,
sad, and empty about having to deliver early and perhaps under less
than ideal circumstances (ie. Emergency C-section instead of vaginal
delivery with family present). Moms will have to grapple with the reality
of going home empty handed, perhaps not to have baby with them for many
weeks or even months. A large part of the celebration of childbirth
is stolen from you. However, it is important to begin to acknowledge
these feelings and thoughts, and to speak about them with your partner,
family, friends, and NICU staff. You are not alone and you are not the
first to feel this way.
Frequently a powerful element of grief is experienced
upon entering the NICU. This is a foreign, high tech environment; or
at least so it seems initially. By virtue of being in the NICU, you
are aware that your baby is extremely fragile, perhaps even critical.
Again, that sadness about "what might have been" may overwhelm you.
You quickly learn that your baby's course through the NICU can be difficult
and that a healthy, "normal" baby may be just a dream. You begin to
let go of your "ideal child" and begin to move towards acceptance of
the possibility of a child with some type of physical, developmental
or intellectual handicap. That is not to say that all babies who leave
the NICU have deficits, but you begin to realize this is a real possibility.
It is not uncommon to deny this reality and to look only for the positive
outcomes. You are so happy that your little one is here and alive. But
over time, you may allow this sadness and grieving to occur and this
will help you to move on and meet the challenges ahead of you.
Even with all the advancements in research and technology,
not all babies can be saved from the complications of prematurity. Some
do die. This event, and the hours leading up to the death of a baby
are full of incredible sadness and loss, perhaps mixed with a tiny bit
of joyfulness at having had the opportunity to spend time with your
baby. It would not be unusual to move through a range of feelings, from
anger, blaming, self doubt, acceptance, powerlessness and emptiness.
These emotions are very raw during this period, and time may seem to
fluctuate between crawling and whizzing by. This is a time when you
are encouraged to spend time with your baby, before and after death:
hold your little one, bathe him or her, have your baby baptised or blessed
if this is your belief, take videos and pictures. Cherish the moments
and build a lifetime of memories. The NICU staff, the social workers
and pastoral care personnel can help aid you through this journey. Most
NICU's have a bereavement program which provides mementos, such as footprints
and handprints, to you and your family. Your grief is not a short lived
event, but rather a process. With time, your grief wil lessen somewhat.
However, it is important to express your miriad of feelings, through
writing, talking with loved ones or counsellors, joining such groups
as Bereaved Families of Ontario, or Compassionate Friends. What works
for one person does not necessarily work for the next. Be aware that
your spouse, children and extended family will likely not grieve exactly
the same as you do.
Having a premature baby can be an exciting adventure,
with many highs and lows. Survivors of the experience equate it to a
"roller coaster ride" or even sometimes "a trip to the moon and back".
It is important to identify and acknowledge the multitude of feelings
that you are experiencing, even the negative ones. Loss and grief are
an integral part of the NICU, and the staff are prepared to help you.
Please use the resources available to you from personnel in the unit,
to psychologists, social workers, your family doctor, other parents
who are currently going through or have gone through the same experience,
family and friends. This is an experience you can survive and can actually
grow from, even if the story doesn't always have the happiest ending.
