NICU Stories - A Mother's "Guilt"

This is an excerpt from a monthly email I receive from the March of Dimes "Share Your Story" campaign. It says a lot of how I felt and how I still feel, read on:

Getting Through Guilt
Liza Cooper, LMSW, Director, March of Dimes NICU Family Support

"Guilt is the very nerve of sorrow" – Horace Bushnell

Recently a mother told me she absolutely knew what caused the traumatic, premature birth of her baby girl. "It was," the mom stated candidly, waiting it seemed for my judgment and confirmation, "it was because I had a Coca Cola during my pregnancy." She had been replaying this moment over and over in her mind, wishing she could go back and have an opportunity to make a different choice.

In my nearly 15 years as a social worker serving families in the perinatal field, I have heard stories from hundreds, maybe thousands of mothers who blame themselves for a birth gone awry. And whether it was the mom who said her premature 24-week twins were born because of an itch she had in the shower that she ignored or the mom that told me that she had insisted on putting up the Christmas decorations that year and that's why her son came so early, all moms focus on some small detail, or set of details, that they are certain they had done that brought this painful experience upon their family.

In all likelihood, most doctors would say that none of the above things could on their own cause a baby to be born sick or born early, but even with the reassurance of their physicians, mothers feel profound guilt. So, why do so many women and mothers feel guilt because of infertility, miscarriage, pregnancy loss, the birth of a sick or premature baby?

Guilt, as Grief

First, and perhaps most important for all mothers to know, is that these painful, isolating feelings of guilt are normal. They are also incredibly common. It is one of the most acute (and unspoken) emotions of grief.

Women may think "What did I do wrong to deserve this?" or focus on how they think they have disappointed their partners, families and themselves.

When something goes contrary to what we expect — especially something we place so much importance on, like the birth of a child — we grieve. We grieve for what could have been, we grieve for what we have lost. And grief has a number of common feelings and stages including shock and denial; sorrow and depression; anger and rage; guilt and blame; and ultimately, for many — not closure, as it was once called (who can have "closure" on the loss of a child?), but instead integration or the weaving of a loss — the tenderness, the pain — into a person’s heart, into their very being, into how they live their lives and how they move forward. And so guilt comes as part of this powerful and very natural process.

A Strange Medicine

Something else happens when things go wrong, when a baby arrives too sick or too soon. We feel out of control and helpless. In a desperate effort to regain a sense of control over the world around them, people often feel guilt or self-blame. It serves as a painful way to place order back in the universe when everything seems so arbitrary, senseless and chaotic. If I blame myself for my baby’s premature birth, if I can identify the reason I believe this happened, then at some very profound level, I can make sure that nothing like this ever happens again. In this way, guilt is a strange medicine we give ourselves.

“It’s not your fault”

One mother I met told the story that when her baby was first hospitalized in the NICU, a nurse found her crying by her daughter’s bedside, and told her “You did not do this”. For her, this was the beginning of healing. Many mothers talk about someone who helped relieve their guilt – an obstetrician, a neonatologist, a trusted nurse, spouse, or dear friend – who reassured them “it’s not your fault”. It doesn’t usually take all the feelings of guilt away, but it is comforting when someone you respect tells you it’s not your fault. Let these important people in your life know what you need. Tell your doctor what you blame yourself for. Tell your spouse, your mother, your best friend what words would be helpful. Even those that love us don’t always know.

Guilt, When It’s Confirmed

There is a lot we do not yet know about what causes premature birth and birth defects – what risk factors cause some women to give birth early, and not others. March of Dimes dedicates itself to finding the causes and ways to prevent pre-term birth. There are things we do know about however. For example, we know that there are risks of smoking, illegal drugs, alcohol, and folic acid deficiency during pregnancy. And this information can be found in books and on the internet. So what do you do if these are the behaviors that you feel guilty for? You can share these feelings too, know that you are not alone, acknowledge these concerns to a friend, family member or healthcare provider who is trusted and compassionate. Remind yourself that no matter what happened before, you never intended for your baby to be born early or sick. And remember that what you do now, how you love, nourish and protect your baby, your children and/or future pregnancies is most critical.

Moving Through Guilt

So when does the guilt end? How does one move through this heart-breaking emotion? Healing begins with revealing this feeling – sharing it with others who understand in the NICU, with a caring therapist, in a support group, on ShareYourStory.org. Speak about it, write about it. Allow others to normalize this feeling for you, as you can normalize it for them. And then get informed – discuss with your doctor what you think caused things to go wrong to get clarification and to develop a forum to process these difficult thoughts. Rather than retracing your steps, stay present. Learn and explore what meaningful things you can do for your baby now – whether its kangaroo care, reading to your baby, keeping your child away from cigarette smoke, integrating his or her life or memory into your heart and your future. And finally, most importantly, allow yourself to move forward, to smile, to laugh, to forgive, and to find light and hope again.

Liza Gene Cooper, LMSW
Director, March of Dimes NICU Family Support