Small wonders, big trauma

Uncovering the effects of NICU experiences

By Sara Mohs

Becoming a new mom can be the most magical time in a woman’s life. But, for a growing number of women, that storyline takes an unexpected and even traumatic turn when their babies are born acutely premature or ill.

“Moms prepare for the birth of their child with a certain mindset,” said MacKenzie Kelley, a 2016 graduate of the College of Saint Benedict. “They think they might be in the hospital for a day or two and then go home. They’re anticipating feeling this deep connection with their baby. Then, when the baby is born so young and fragile or critically ill, they can’t do that skin-to-skin time right away. That makes connecting with their baby difficult. The whole story has now been flipped upside down.”

Those stories were the focus of Kelley’s doctoral research in occupational therapy (OT) at St. Ambrose University (Iowa), which she completed in August. But, the journey of her research began much earlier.

As a Saint Ben’s biology major, Kelley felt especially drawn to women’s health and pediatrics. And, she said her liberal arts education was a perfect segue to OT.

“My liberal arts background gave me a holistic mindset that also applies to OT because we talk about the physical, neuro-motor and psycho-social factors of patient care. Having a well-rounded background played right into the OT domain,” said Kelley.

About the Research

When Kelley began thinking about her doctoral research at St. Ambrose, she knew she wanted to choose a topic that would ultimately support new moms through OT. That’s when she noticed two parallel birthing trends. During the last 10 years, new technology and medical advancements have enabled more mothers to conceive and/or prevent miscarriage, which means more high-risk pregnancies and more premature births needing neonatal intensive care. At the same time, advancements in technology and medicine have also decreased mortality rates of premature infants. As a result, more premature babies are being born earlier and surviving longer, creating an increase in Neonatal Intensive Care Unit (NICU) experiences.

“We have babies who are born as young as 23 weeks and are surviving. That wasn’t the case 10 years ago,” said Kelley.

Having a baby born prematurely creates a number of stressors that can be traumatic for new moms and families. First, it shatters the idyllic storylines these new mothers have internalized about the birth. As they try to cope with the trauma of letting go of the infant they thought they were going to have and accepting the infant they do have, Kelley says the situation is further complicated by the NICU’s medically complex setting.

“NICUs are designed to provide the highest quality of care for the infants, but it’s not conducive to the family structure. They are very trauma-inducing and stress-provoking,” she added.

Unfortunately, these stresses don’t end when the mothers and babies go home. Kelley said the trauma that takes place in the NICU often interrupts a mother’s ability to establish routines and roles and participate in daily life activities even after she returns home. To find out how much that stress affects a new mom’s mental health, Kelley’s research involved identifying themes that surfaced during interviews she conducted with mothers post-NICU about their experiences caring for their children during the NICU and at home. The methodology, called qualitative phenomenological study, included a sample of 10 mothers with children under five years of age.

“I picked a qualitative phenomenological study because I wanted to have in-depth conversations. I didn’t want to do a survey where I wouldn’t get the face-to-face time, because this is a more vulnerable topic for women to discuss. There’s a lot of value in being able to tell their story from start to end. I wanted to know what brought them to this point,” she said.

In the 60- to 90-minute interviews, Kelley asked mothers about their day-to-day NICU experience, if and how the experience set them up for their transition home, their current confidence level in caring for their child and how compliant they think they’ll be with home programming based on the amount of time they had to prepare.

The themes that emerged from her research included relationship challenges, difficulty finding their own routine, feeling overwhelmed and isolated, fear of outside childcare and frustration with the absence of any orientation process when they arrived in the NICU. The most prominent theme was lack of self-care, which affected 10 out of 10 new moms. Kelley explained that self-care for post-NICU moms is different from how we may typically define it.

“This isn’t getting your highlights done or treating yourself to something extra. This is showering and getting dressed and changing clothes. These are basic self-cares and wellbeing,” she noted.

The cumulative effects of these stressors can lead to perinatal mood disorders, which often impact the child. Kelley said literature shows that having a mother who’s showing symptoms of perinatal mood disorders has an effect on the infant’s mental health and the mother’s ability to care for the infant.

“When a mom is feeling upset and overwhelmed, she’s going to have less time to be intentional about the way she engages in developmental play with the baby. Then the baby isn’t being set up for success. That’s not any fault of the mom. It’s a lack of services that should have provided her with proper care and education,” she said.

Based on her research, Kelley hopes to create action steps that can be implemented earlier in the NICU experience that will lessen or prevent some of the stress new moms will experience. That could include providing NICU orientation for new moms, creating support groups during and after the NICU experience and implementing routine depression and anxiety screenings for moms post-NICU. She also hopes to use her research to help influence policy reform for increased mental health services.

“I want to help close the gaps of maternal mental health and how we respond as therapists in the clinic versus being on Capitol Hill and supporting legislative changes. To make change in policy, there really has to be an identified problem to the current service delivery method, so I’m hoping to publish my research to support that OTs have a role in this area and I’m hoping my evidence will help make that happen,” said Kelley.

This spring, Kelley finished her last semester and received her doctorate in occupational therapy from St. Ambrose. She’s disseminated her research on “Role Adjustment, Mental Health and NICU Experiences of Mothers” on two national stages – the American Occupational Therapy Association national conference in New Orleans and the National Association of Neonatal Therapists conference in Phoenix – and has recorded an episode for the national OT podcast, Glass Half Full.

Now that she has graduated, Kelley plans to become a certified neonatal therapist and work in the NICU helping parents in those early stages of bonding with their infants. Her goal is to help them establish roles and routines that will be conducive to the health of both the infant and the parents.

Prepped for Success

Reflecting on her role as a researcher, Kelley said Saint Ben’s prepared her more than she could have imagined for graduate school and its work load.

“Having the opportunity to write scientific papers in the biology department while learning the ins and outs of data analysis really gave me a leg up on starting my own research project and the process of writing a manuscript. My grad school classmates even remarked on how easy it came for me. I didn’t have this big learning curve on how to study for both practicals and tests. I had already been doing that at Saint Ben’s,” she said.

She also attributes her success to the exceptional curriculum in the Biology Department and the high-level course work that better prepared her for life after Saint Ben’s.

“Saint Ben’s gave me the courage and strength to be a woman in science and to be a bold leader. It taught me to chase after my dreams,” she concluded.