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Key points
- It can help parents to know that they are not alone in their distress, they grieve many losses, and they might be experiencing trauma.
- Separation from the baby is especially distressing due to their bond, being primed to nurture their baby, and the resulting grief and panic.
- Making sense of what's happening to them as parents and why it's so distressing can help them adjust to this unexpected path.
September is Neonatal Intensive Care Awareness Month. It honors the families who have spent time in a Neonatal Intensive Care Unit (NICU) and the medical professionals who work with them.
After finding out they're pregnant, most parents expect to have an uncomplicated pregnancy, a healthy newborn, and all the special moments of meeting, holding, and caring for their little one, and bringing their baby home to eager friends and relatives. Unfortunately, for some parents, these expectations are cruelly violated.
Imagine giving birth many weeks before the baby's due date or discovering that your baby has problems that require intensive care after birth.
Imagine requiring a cesarean section because it might increase your baby's chances of survival.
Imagine the doctors whisking your baby away while you recover from the birth.
Imagine your precious new baby being cared for by strangers.
Imagine longing to be with your baby, but only receiving photographs and updates from the nurses.
Imagine visiting your baby in a strange place, surrounded by equipment you've never seen and sounds you've never heard.
Imagine seeing your baby for the first time and feeling scared and sad instead of joyful.
Imagine your baby's face and body covered, not by a blanket, but by tape, gauze, wires, and tubes.
Imagine your baby appearing so small and/or so strange that you wonder how survival is possible.
Imagine struggling to understand what the doctors are telling you about your baby's condition.
Imagine being afraid to touch your baby because you worry about being an agent of harm.
Imagine rarely being allowed to hold your baby, when you yearn, with every fiber of your being, to offer your warm embrace.
Imagine leaving the hospital without your baby, who is cradled by medical technology, instead of being in your arms.
Imagine your milk coming in, but your baby cannot breastfeed, so all you can do is use a breast pump and save every precious ounce so that when your baby's digestive system is ready, it can be administered by a tube.
Imagine feeling isolated from your friends and relatives who think that your baby just needs to grow or that your baby's problems can be fixed by modern medicine, and they don't understand why you're so upset.
Imagine feeling guilty, wondering what you did or didn't do that makes your baby require intensive care.
Imagine feeling as if you've failed as your baby's parent.
If you are a NICU parent, you needn't imagine—you already know.
Making Sense of What's Happening
What you need is to make sense of what's happening, to understand why you feel so distressed, and to pinpoint what is so distressing about this experience. When you can make sense of it and understand why you're struggling, you and your brain can more easily adjust to this unexpected path of NICU parenting.
First, know that you are not alone. These painful experiences are typical for many parents whose babies are admitted to the NICU, and it is a bewildering time. Profound feelings of disorientation, fear, sadness, longing, confusion, isolation, guilt, and failure are common whether a baby's NICU stay was expected or there was a shocking discovery at birth, and whether a baby is admitted to the NICU for an hour's worth of stabilization, testing, and observation or months of continuous, life-saving treatments.
Second, recognize that you are experiencing many losses. There's the loss of a healthy baby, a celebratory homecoming, a happy newborn period, and congratulations from friends and family. You may also miss your baby reaching milestones at the typical age, or the uncomplicated ease of taking care of a baby without special needs. And, therefore, you grieve.
Finally, consider that the impact of this experience may be traumatizing for you, particularly due to fear and worry for your newborn, plus a sense of helplessness, and, most distressing of all, separation from your baby.
Why It's So Distressing
Why is separation from your baby so distressing?
By the time your baby was born, your parental bond had been deepening since you became pregnant and embraced the idea of adding this child to your family. As a result of this bond, you are primed for nurturing and protecting your baby. So when you are separated from your little one, you are neurobiologically wired to experience grief and panic. You also require close contact and reciprocal interaction with your infant in order to feel like your baby's parent.
But when your baby requires intensive care, your loving arms are not enough, and you are often blocked from getting close to and caring for your baby, which can disrupt your developing identity as a "good parent" to this baby. How can you feel like a good parent when you worry that even your gentle touch might hurt your baby? How can you feel like a good parent when you can't easily feed or rock or snuggle with your little one? How can you feel like a good parent when you feel responsible for your baby's predicament and there's nothing you can do to fix it? How can you feel like a good parent when you don't even know how to read your baby's cues or respond? And how can you feel like a good parent when you aren't qualified to give the care this baby requires, much less take your baby home with you?
Indeed, in the NICU, one of the biggest challenges parents face is learning to become a different kind of parent to a different kind of baby. You must learn to manage your feelings of fear, guilt, and failure. You must learn that your grief is normal and accept how it finds expression. You must learn about your baby's medical condition and how to communicate with your baby's doctors and nurses. You must learn the kinds of touch your baby can tolerate. You must learn how to feed a baby who may struggle with coordinating sucking with swallowing and breathing. You must learn how to advocate for your baby and perhaps make some difficult medical decisions. Naturally, all of this learning takes time and practice, but your bond to your baby is the most powerful motivator, and, with the right support, you are neurobiologically wired to succeed.
Also read: What Kinds of Support Help Parents Thrive in the NICU?
References
Maroney, D. The Imagine Project: Stories of Courage, Hope, and Love. Yampa Valley Publishing, 2013.
Kosminsky, Phyllis S. & Jordan, John R. Attachment-Informed Grief Therapy: The Clinician's Guide to Foundations and Applications (Series in Death, Dying, and Bereavement). Routledge, 2016.
Bergman, N.J. Birth practices: Maternal‚neonate separation as a source of toxic stress. Birth Defects Research. 2019: 111(15), 1087-1109. http://doi.org/10.1002/bdr2.1530
Maddox, S. A., Hartmann, J., Ross, R. A. & Ressler, K. J. Deconstructing the Gestalt: Mechanisms of Fear, Threat, and Trauma Memory Encoding. Neuron. 2019: 102, 60–74.
