Dealings
Making Peace with Life & Death Decisions in the NICU

By: Mara Tesler Stein, Psy.D. and Deborah L. Davis, Ph.D.
Should we have trusted our doctors’ advice?
Your doctors had the benefit of years of training, experience, collecting and reviewing information, consulting with colleagues and specialists. Especially when there are many uncertainties, relying on your doctors’ judgement can be a very reasonable course to take. If you discover a few years later that your doctors are giving different advice or are using better techniques, it’s because knowledge & technology has changed since your baby was in the NICU.

Did/Does my child resent me?
To feel resentful, your child would have to hold you responsible for invoking life or death. But you know all too well that you do not hold that power. If you did, you would have made sure your baby was born healthy and at term. Instead, all you could do was hope and pour your nurturing and devotion onto your baby. Because your decision arose out of caring, protection and deep emotional investment, and your baby sensed/senses your love.

I was under so much stress. Did that interfere with my judgement?
While it’s true that you made your decisions under duress, it’s also a fact that these kinds of decisions cannot be totally rational. There is a huge and crucial emotional component to the situation. Your emotional duress actually played an important role in your judgement. It enabled you to make this decision with your heart and gut, not just your mind.

Did I do what my baby wanted?
Because your overriding concern was your baby’s best interests, you may wish you could have asked your baby about his or her own desires. Without absolute confirmation, you may feel unsure if this was what your baby wanted. Do remember, you were in an excellent position for making such a judgement. No one was closer to your baby in blood, body and spirit than you. You may feel like you were merely making your best guess, but your best guess is the best one of all. For a different baby, you might have made a different decision. Trust in your sense of what this baby wanted.

Shouldn’t someone else have made such an important, difficult decision? My feelings of responsibility are such burdens to bear.
You may wish that someone else could’ve decided, someone who knew more, who could think more clearly, who could foresee the future. But there is no such person. Because these decisions deal heavily in matters of the heart, parents are the most appropriate decision-makers. It is a heavy responsibility to bear, but your baby would want you, not strangers to decide.

Will second thoughts always haunt me? How can I stop questioning my decisions?
Whether your baby lives or dies, you will grieve for what might have been. Asking "what if?" is a natural part of your grief. At first, "what if’s" can be sharp and self-incriminating. As you deal with your grief, particularly your anger and guilt, and as you come to terms with your baby’s life and/or death, you will notice a subtle shift. You will come to accept reality—it happened, that was your decision, you can live with it—instead of fighting it. Lingering "what if’s" become reflective daydreams rather than willing reality to change. They may become gentler and broader: "If only he hadn’t been born so prematurely", rather than, "If only I had made different choices." In time you will be able to let go of what might have been and accept what is.

Wrestling with second thoughts gives you the opportunity to evaluate, solidify and embrace the beliefs, principles and intuitions that guided your decision. As you grieve, be gentle with yourself and give yourself credit for facing an impossible situation with courage, faith and love.

Parts of this article were adapted from Deborah Davis’ book Loving and Letting Go: For parents who decided to turn away from aggressive medical intervention for their critically ill newborns (Centering, 1993).

Mara Tesler Stein is a clinical psychologist in private practice and Deborah L. Davis is a developmental psychologist and author of Empty Cradle, Broken Heart (Fulcrum, 1991;1996). They both specialize in perinatal & neonatal crisis and adjustment, parent education and child development. They are currently writing a book, The Emotional Journey of Parenting Your Premature Baby: A Book of Hope and Healing.

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