xi
The birth of a baby is one of the most rewarding, exhausting, exciting, beautiful, person-
al, and emotionally charged events of a lifetime. When everything proceeds perfectly, it
is also one of the most joyous and satisfying experiences. But when everything does not
go well—when labor is complicated or the baby is born prematurely or with a congenital
malformation or an illness of one sort or another—different emotions take over. If your
baby is now in an intensive care nursery, you may be feeling anxiety, confusion, sadness,
guilt, anger, and even grief over the loss of the normal, healthy birth experience you had
envisioned. But your primary focus is likely obtaining as much information as you can
about this new situation.
You probably have a multitude of questions—for which you want concrete, simple
answers. You want to know what will come next, whether your baby is suffering, and
what is being done to alleviate his or her pain. But most of all, you want to know the
implications and eventual outcome of your child’s condition, both over the next few days
and for your child’s lifetime. All too frequently the answers to many of these questions
are not immediately available. Despite our tremendous progress in both the science and
the art of neonatology over the past 2 to 3 decades, we can seldom predict the outcome
of most neonatal conditions for an individual baby until we have had the benefit of some
time to watch those conditions—and the complications associated with them—evolve.
But we do know a great deal about your baby’s medical condition, what may come next,
and what can be done to decrease pain and suffering. In fact, the amount of information
is so voluminous, it is unlikely that you will be able to absorb it all during the many dis-
cussions you will have with the doctors and nurses caring for your baby. This book will
help you prepare for those discussions and know what questions to ask. It will also serve
to reinforce, review, and clarify the information you receive from those who are helping
your baby.
Neonatal intensive care has evolved from a single physician and a single bedside nurse
caring for a baby to one or more complex teams of physicians, nurses, and allied person-
nel working together to apply their combined expertise to deliver optimum care to your
baby. Although this team approach compounds the knowledge and skills available to
help your child, it can also sometimes cause confusion, particularly when you receive
information about the same subject from multiple sources in different forms and from
different perspectives. Remember that you are also a critical member of this team and
your questions, opinions, and recommendations should be highly valuable and respected
by the other members.
Foreword
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