As Beth Canning* rode in the back of the ambulance watching two EMTs working with frantic precision on her 1-week-old son, she asked herself an unthinkable question: “Is my baby not going to make it?”

Her pregnancy and birth had been unremarkable, just how everyone hopes it will be. Teddy was born just a few days early and made his arrival quickly but with little fanfare. He was Canning’s second baby, so she knew what to expect and was feeling grateful for a positive birth experience and a happy, healthy baby. Everything seemed like it worked out according to plan; she and her husband John were just starting to settle in as a new family of four. 

Just days old, Teddy’s journey took an unanticipated turn. This family, like so many others, found themselves admitted to the Neonatal Intensive Care Unit (NICU) at Boston Children’s Hospital (BCH).

The scope of the crisis

In the early days of parenthood, most families imagine quiet moments of bonding, all the “firsts”, and maybe some sleepless nights. But for thousands of parents each year, those first days, weeks, and even months are spent inside the NICU — a place where newborns fight for survival and families face emotional and logistical challenges they never anticipated.

According to the March of Dimes 2024 report card, the US preterm birth rate is 10.4 percent, a D+ grade for the third consecutive year. In Massachusetts, the rate is 9.1 percent, meaning nearly one in ten babies are born too soon. These infants often require specialized NICU care, which can range from a few hours to several months. Even short stays can disrupt breastfeeding, delay bonding, and trigger long-term emotional stress for parents.

Once discharged, the challenges don’t end. Without coordinated support, families face a heightened risk of hospital readmission, daunting medical follow-ups, and untreated postpartum mental health conditions. Perinatal depression affects up to one in seven women in the US, and studies suggest the rate may be even higher among NICU parents.

“I wouldn’t wish it on my worst enemy”

Teddy had been perfectly healthy. He passed all of his tests in the hospital and received a clean bill of health from his follow-up appointment with his pediatrician. So when he started having trouble breathing one afternoon, Beth knew something was wrong.

The family made a trip to their local emergency room but were quickly transferred to Boston Children’s Hospital (BCH). It was on this trip that Teddy’s health quickly deteriorated.

“It was the longest 45 minutes of my life. I wouldn’t wish that feeling of helplessness or fear on my worst enemy,” she says.

The team at BCH worked quickly to stabilize Teddy, but the critical nature of his condition required admission to the NICU. There, he would receive round-the-clock, 2:1 care from a team of specialized doctors and nurses. And Beth and John would try to juggle a whirlwind of medical interventions, countless procedures, taking care of their 2-year-old at home, and Beth’s postpartum care.

“It was a constant cycle of worry, hope, disappointment, and guilt, over and over,” Beth shares. “Worrying about my baby, hoping that maybe we were getting answers, disappointment when we would be back at square one, and then just so much guilt. Guilt that I can’t help him but also guilt that my other baby is back home wondering why her mommy and daddy are gone.”

Support when you need it most

“I don’t care if your baby was there for six hours or six days or six months, it was a traumatic experience for you as a parent,” says ProgenyHealth’s Katie Luner, MBA, MSW, LCSW, CCM.

Recognizing the complexity of a NICU stay, ProgenyHealth has developed a care management model that treats not just the infant, but the entire family. Harvard Pilgrim Health Care, who offers this service to eligible members, is committed to improving access to quality care that supports better outcomes for families with newborns.

To support these parents, ProgenyHealth’s case managers begin with a comprehensive needs assessment before discharge, asking practical but critical questions: “Do you have a car seat that fits your baby’s size? A safe place for them to sleep? Are you breastfeeding and need support? Have you scheduled a pediatrician visit?”

“They [the baby] are the patient that we’re working with,” says Luner. “But as a real foundation to the situation, mom and dad are going to be a part of that too, so we need to understand what their needs are because their health is super important to being able to take care of that baby to the best of their ability.”

These aren’t just logistical details, they’re lifelines. The organization’s team of board-certified physicians, nurses, social workers, and lactation consultants provide education, emotional support, and connections to resources like transportation, food assistance, and baby supplies. 

“There’s just nothing that replaces having an advocate by your side who knows what they’re talking about, knows what they’re doing, who can get you through probably one of the most difficult journeys you’re going to go through as a parent,” adds Luner.

Building a safety net for NICU families

NICU care is not just medical — it’s emotional, logistical, and deeply personal. Beth recalls sitting in the parent’s area on the NICU floor, where exhausted parents would take a few minutes of reprieve to have a meal, make a phone call, or just take a break. 

“I remember thinking — how is this happening, why is this happening to me? It was hard not to have a few ‘woe is me’ moments,” says Beth. “But I would overhear parents talking about awful things like breathing tubes and coding, and I know in the grand scheme of things we had it far better than most.”

Teddy is home now — he was discharged with supplemental oxygen and 24/7 monitoring but has since been able to ween off all support.

Beth and John were fortunate to have a strong network of family and friends who stepped in to help. But they are acutely aware that many families don’t have that safety net, and for them, the NICU journey can be even more isolating and devastating.

“For people who don’t have that support system, I really can’t imagine how you would get through it.”

*Name changed to protect privacy of respondent.

Harvard Pilgrim Health Care, a Point32Health company, provides nationally ranked health plans and care-based programs and services to nearly 900,000 members in New England and beyond. Founded by doctors more than 50 years ago, it builds on that legacy and partnerships through an expansive network of doctors and hospitals nationwide to improve health outcomes and lower costs through clinical quality and innovative care management.  A leading, not-for-profit health and well-being company, Harvard Pilgrim Health Care guides members — and the communities it serves — to better health each day.