In the Loop

News and views from across Mayo Clinic

September 26, 2019

Parents of Premature Babies Find Special Support System: Each Other

By In the Loop

The experience of having a child in the NICU often creates connections among families, who provide a unique source of support made possible through shared experience.

Mindy Alexander sat in the quiet room, nervously awaiting an update on her 3-week-old daughter, Emsley, who was having surgery. It was a hard day, another in a string of difficult days since Emsley had arrived 16 weeks before her due date and thrust her parents into the unfamiliar world of the neonatal intensive care unit at Mayo Clinic.

It was a sometimes terrifying and often lonely place. Or, it had been. But that day, there was someone else in the waiting room: Tallia Church. Tallia also had a baby born at 24 weeks. Her daughter, Hillevi, was just three days younger than Emsley. The two women began talking. And suddenly, Mindy felt a little less alone. "We both vented," Mindy says. "It was so nice to talk to someone who understood."

That was the first of many conversations between Mindy and Tallia during the months they kept vigil at their daughters' bedsides. Along the way, they connected with another mother, Kristen McGarry, whose daughter Brynlee was born at just 27 weeks. The three women say their connections to each other provided a unique source of support made possible through their shared experience. "The staff try to understand, and they get what you're going through to an extent, but it's a different feeling when it's your child," Tallia says. "It's nice to talk to another mom who understands the language, to have another mom to cry with because you had a bad day."

And "bad day" takes on a whole new meaning in the NICU, the women say. "At one point, we were told we might need to consider hospice for Brynlee," Kristen says. "Most families don't have to hear the word hospice for their baby. You feel like you go two steps forward, then 10 steps back. It's hard to convey how emotional it is." Mindy agrees. "People don't understand the weight on your heart," she says. "Your baby is on their death bed. You've been told discouraging things. And you're trying to balance taking care of your baby and your other kids at home. The weight of it all is overwhelming. It's really nice to be able to share your experience with other people who truly understand."

Mayo Clinic recognizes the importance of this type of support and offers activities designed to bring families together during their time in the NICU. These include catered lunches each week, where parents are invited to share a meal with other families. There are also weekly activities — from crafts to coffee runs — that give parents another chance to connect. "I can't praise these opportunities enough," Kristen says. "It is really nice to have a reason to get out of your room. I wish we would have taken advantage of these things earlier. We kept to ourselves for too long. It really does help to meet other families."

And sometimes, those connections continue even outside the hospital walls. Emsley, Hillevi and Brynlee are all at home now, but their mothers continue to keep in touch. Tallia tells us the scared and lonely strangers in the waiting room have become "lifetime friends," sharing videos of happy milestones and text messages about ongoing appointments. And whether those appointments come with good news or bad, they now know they don't have to carry it alone.

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Tags: neonatal intensive care unit, Patient Stories, pediatrics

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