Fear vs. Hope in the NICU
Parents of preemies usually come into the NICU in a daze, or as one mom described it, “in the middle of a storm.” The storm of emotions may include shock, sadness, anger and guilt about their unexpected premature delivery. Parents feel their lives are rapidly spiraling out of control, and sense that their baby is slipping into a remote realm where they will be stripped of a meaningful role as parent. And, to make matters worse, parents recognize immediately that they are in a foreign environment where a different language—one they don’t know yet—is spoken. Fear is an ever-present emotion, as every NICU parent will tell you, including the ones who share their narratives here.
Parents of preemies face a challenging task: how to balance their fears with their hopes. As one NICU dad told me, “We are scared out of our minds.” Parents are scared that Baby might not live, scared that Baby might suffer disabling complications, and scared that Baby might have lifelong problems. The unknown future stretching out in front of them can be terrifying; they don't know what will come next, or even how they will handle it when it does come. On the other side of fear is hope. But, if hope doesn’t balance fear—or better yet, win out over it—fear will overwhelm parents, leaving them feeling so depressed or stressed out that they can barely function.
There is a lot to hope for in a NICU. Most parents have heard stories of preemie miracles made possible by both the advanced technologies now available and the meticulous care of the medical staff. They fervently hope their baby will be the next miracle, and that their long-held dreams of growing their family will come true.
NICU staff, both doctors and nurses, can help tip the balance from fear to hope. Whenever I admit a tiny or critically ill baby to the NICU, the primary message I try to communicate to parents from the get-go is, “We don’t know where your journey will take you, but we will be with you every step of the way.” The road through the NICU is long and winding, with lots of hairpin curves to get around, many seemingly impossible hills to surmount, and plenty of deep valleys to tumble into. At times, parents may feel like they are trapped in a cruel game of Chutes and Ladders, as their baby progresses nicely one day, only to have a setback the next.
It is an arduous, frightening journey for parents, and sometimes even for staff. As medical caregivers who guide parents on their journeys, we need to let them know that they are indeed their baby’s parents, and we doctors and nurses are merely privileged to be the baby’s stewards through this part of their lives. We will not replace the parents in their baby’s heart, nor is their baby ours to keep. We need to do everything we can to encourage bonding between parent and child (think Kangaroo Care), and to strengthen parents’ confidence in their roles, giving them hope while continually acknowledging and validating their fears. To minimize their feelings of helplessness, we need to show them how they can help care for their fragile baby—empower them—even if their own hearts race with anxiety while doing so.
We need to respect where parents are on their emotional journeys. We must give them time to sort out their feelings and to find their “new normal.” It may take months. As one father confided in me, “Don’t assume we are okay when we seem to have a handle on everything. I just acted strong for my wife. I was a mess inside. It wasn’t until the end of the third month of our four month NICU stay that I really got a handle on things.” Patience is more than a virtue for medical staff; it’s a necessity. Compassionate patience, that is.
We should encourage dialogue with parents as our partners, and really listen to what they say about both their fears and hopes. We must let them decide what to hope for. If their hopes seem unrealistic to us, we need to tread lightly. Because without hope, how can parents keep going forward? And the NICU staff’s best hope for parents should be that they ultimately feel good about themselves as parents, when they finally get to take home the healthiest baby we can give them.