Bringing a child into the world can feel overwhelming for most new parents, but these feelings are heightened when the new baby must be admitted to the Neonatal Intensive Care Unit, or NICU, due to prematurity, a genetic condition or critical illness that requires around-the-clock care. About 10% of all newborns need this specialty treatment.
For Esther Kangethe, those feelings began in June 2024, when she was rushed to Oregon Health & Science University due to significant cramping and bleeding while 20 weeks pregnant with twins.
Tragically, Kangethe lost one of her twins that day. But she held onto hope as “Twin B” remained stable for the next few weeks. She gave birth to her son at 23 weeks; he weighed just over a pound. He was named Myles — a profound tribute to his health journey, representing the miles traveled between the different hospital units during their stay.
Although overjoyed that Myles was born safely, Kangethe understood there was a long road ahead to ensure he grew strong and healthy.
“Now the reality hit me that I had a baby in the NICU, and I was so scared,” she said. “It was something new I’d never experienced before.”
But Kangethe wasn’t alone for what would be five months in the NICU.
Recognizing the need for both mental health and resource support through the traumatic experience of a NICU stay — particularly for families from racial and ethnic minority groups — OHSU Doernbecher health care teams have established culturally specific support groups designed specifically for Black and Latino families. The groups are open not only to OHSU patient families like Kangethe but all families who have had a child in a Portland NICU.
“It’s hard to explain what’s going on with your baby to someone who hasn’t had that experience. A lot of families are spending days and nights in the hospital, which can lead to a feeling of extreme isolation,” said Devlynne Sasha Ondusko, M.D., assistant professor of pediatrics in the OHSU School of Medicine who helped establish the support groups.
“Peer support groups provide the opportunity for families with similar lived experiences to come together, learn from and mentor one another, and find hope from those families who have come out the other side.”
Personalized support
Navigating a NICU stay is a challenging experience for any family, but can be especially so for racial and ethnic minority groups. An OHSU-led study published recently in the journal Pediatrics found that Black families continue to experience differential treatment in the NICU, including discrimination and poor communication, which reinforces the untrustworthiness of the health care system.
Improving care and the patient family experience requires more transparent communication, advocacy and mental health support, increasing engagement in patient families’ parental roles, and decreasing biased treatment and provision of resources, said Ondusko, corresponding author of the study.
“One thing that is apparent is that there is not nearly enough mental health support for parents who are going through the traumatic experience of a NICU stay,” she said. “Finding resources and staying connected to resources is very hard, especially during and after the transition of taking your baby home. We started to think about how we could better support families of color, who have told us they experience additional isolation in this setting.”
The OHSU support groups seek to address that issue. They are a safe, supportive space where families can come together, share a meal, learn about resources and, most importantly, find connection with others sharing a similar experience. The discussions are participant-led but guided by facilitators, who are qualified mental health professionals, and community organization leaders, including Healthy Birth Initiatives and Healthy Families.
Ondusko introduced Kangethe to the support group for Black families. Kangethe said the group is not only a safe place to speak about her emotional experiences, but also provides the opportunity to ask questions and better understand her baby’s care.
“I’ve been going to the meetings every month and have connected with the parents there who had similar situations to mine, and that has really given me hope,” she said. “These groups make you stronger and remind you that you’re not alone in this.”
Feeling supported by the care team was a crucial part of her overall experience, Kangethe said.
“The doctors in the OHSU NICU were really the best,” she said. “They understood the parents, were very good at explaining things, had empathy and were able to listen. They even offered regular one-on-one time with my doctor where I could ask any questions and write things down.”
Expanding access to support
Ondusko and colleagues are now conducting ongoing research, including in-depth interviews with patient families, to understand what is beneficial about the support groups and what could be improved, as well as how to expand access throughout the community and adapt the format to other groups.
“I’d love to see us make this more inclusive between all of the NICUs, and even alternate between sites to ensure all families can access this resource,” Ondusko said.
Ondusko also hopes to leverage lessons from these groups for the development of a program that could be shared and applied in other NICUs around the country.
For Kangethe, after five long months in the NICU and meeting with her support group, she received the ultimate holiday gift: Baby Myles was discharged just before Thanksgiving. At 8 months old, he’s now happy, healthy and thriving at home with his family.