What Works to Help Vulnerable Infants Survive and Thrive?
Two Stanford-led research teams are advancing family-centered approaches to care in the United States and India
Despite advances in modern medicine that have lowered fatality rates for both mothers and infants, newborns around the world remain vulnerable, especially those born prematurely or with low birth weight. Pre-term births are the leading cause of death in children under five, and the World Health Organization estimates that 75 percent of these deaths could be prevented with existing, cost-effective interventions. Babies born in rural or low-income regions face disproportionate risk. Under-five mortality is 1.5 times higher in rural communities than in urban ones, even after controlling for wealth, and limited local resources can make it harder for families to access timely, high-quality care.
Global health researchers and neonatologists widely agree that proven interventions designed to enhance the physical connection between infant and family can meaningfully reduce mortality among those born prematurely. Family-centered care (FCC), a framework in which parents are involved as equal partners in their infant’s care in the neonatal intensive care unit (NICU), improves outcomes for both infants and families. Kangaroo mother care (KMC), which prioritizes continuous skin-to-skin contact between parents or caregivers and the infant as well as exclusive breastmilk feeding, can save lives in low and middle-income countries. There is growing support for expanding both approaches across clinics, NICUs, and communities globally. Two Stanford-led teams, working separately with SIL funding and cross-sector partnerships, are engaged in research projects focused on advancing each intervention.
Malathi Balasundaram, clinical professor of pediatrics at Stanford School of Medicine and Founder and Executive Director of FCC Taskforce, and Morgan Kowalski, Director of Operations for FCC Taskforce, are working with NICU parent leaders to find ways to expand FCC in NICUs across the U.S. Premature babies and critically ill infants face a higher risk of long-term health and developmental challenges. The burden on parents is significant as well: separation from their newborn in the NICU can take a serious toll on parental mental health. Because the FCC model positions parents as active members of their baby’s care team—emphasizing participation, communication, skin-to-skin contact, shared decision-making, and emotional support — it has been shown to reduce parental stress and improve long-term neurodevelopment for the baby.
In India, Gary Darmstadt, the Sue Alvarez Professor of Neonatal and Developmental Medicine and Associate Dean for Maternal and Child Health at Stanford School of Medicine, has partnered with the Community Empowerment Lab (CEL) to develop a model for community-initiated KMC and test ways of scaling KMC across rural Uttar Pradesh by designing strategies with local communities and healthcare providers. Though KMC has a strong evidence base behind it, Darmstadt and team recognize that practicing KMC often requires surmounting a different set of barriers, particularly in rural communities where cultural expectations may pull a woman away from her child to attend to household duties. With an eye toward developing sustainable ways of delivering KMC to vulnerable infants, the team is focused on leveraging broader support and involvement across families, communities, and the health system.
At their core, both research projects are about bringing the primary intervention—families (often the mother)—back to their newborn child, no matter the circumstances. “The separation of the mother and the baby is so inculcated in our systems,” says Darmstadt. “It’s one of the most damaging things our health system has created.”
Changing the culture in the NICU
Family-centered care (FCC) was developed after World War II, when evidence emerged that separating hospitalized babies from their parents led to lasting psychological harm. Since then, FCC has been proven to improve outcomes for both infants and families, by reducing length of hospital stays, lowering mortality rates, and improving the family’s well-being at discharge. Parents engaging in FCC often report leaving the NICU feeling like capable parents who are better equipped to advocate for their children at later specialist appointments. Despite this evidence, FCC is not the current standard of neonatal care.
Balasundaram and Kowalski are currently benchmarking FCC implementation across hospitals, in collaboration with the University of California—San Diego (UCSD), FCC Taskforce, and NICU Parent Network. They have surveyed 99 NICUs, largely in the U.S., with over a dozen based internationally, spanning children’s hospitals, academic teaching hospitals, and rural smaller NICUs. The survey results will be published later this year.
The process has helped raise awareness of FCC among health facilities and shed light for the research team on barriers to its adoption. Understanding how widely used FCC currently is alongside the trends at play in the facilities that use it, Balasundaram explains, can inform her research team’s next steps. Conversely, understanding the hurdles for implementing FCC can help the team consider solutions to overcome them. Ultimately, the team hopes to create a gold standard for FCC and scale their approach in hospitals.
Balasundaram, who has been practicing as a pediatrician and neonatologist for over two decades, is aware that complex health systems don’t make it easy to implement FCC. Against a backdrop of heavy patient loads, administrative tasks, and short staffing, healthcare professionals already feel crunched for time with their patients. “They imagine implementing FCC would mean more work and time to train the families and mentor them. And yes, it will be more work in the beginning,” she acknowledges. “But ultimately FCC will make parents better prepared to take their babies home and it is the right thing to do.”
Through implementation research and education, Balasundaram is pushing to change NICU culture so that families feel welcome at the bedside and are treated as experts when it comes to caring for their child. “Clinicians also need to remember that having a baby in intensive care is “not part of any [parent’s] birth plan,” she adds. If clinicians can understand the trauma parents experience due to separation, they may be more willing to champion FCC.
Getting families to the NICU to play an instrumental role in the care delivered there can also prove challenging. Some NICUs may have limited hours in which parents can be present at the bedside, which can cut into the time that a parent offers their baby skin-to-skin contact. Transportation and parking costs may make coming to the NICU financially prohibitive for low-income families. Some parents lack paid leave to care for their critically ill infants, and must make hard choices about how to use their limited parental leave. “There is not a universal way to get parents to the bedside,” says Balasundaram.
Talking openly with families during and after their NICU stay—about the barriers they face and their specific needs such as mental health support and transportation help—is essential to shaping care plans. Achieving this requires a culture shift toward inclusivity, especially among healthcare professionals.
Overcoming cultural barriers
Kangaroo mother care (KMC) was developed in the late 1970s in rural Colombia, born from the practical reality that many birth centers in low-and middle-income countries don’t have incubators. Instead, mothers are the primary source of warmth and stimulation for low-birth-weight or premature babies through skin-to-skin contact and breastfeeding immediately after birth. KMC can prevent infections and improve the neurodevelopment of high-risk newborns. Today, KMC is used across the world, mostly in low- and middle-income countries. If started immediately after birth, KMC can save up to 150,000 more lives every year. “There’s evidence that it improves survival, development, school readiness, performance, and economic productivity,” says Darmstadt. “Providing KMC has benefits that families can immediately understand.”
In Uttar Pradesh, where CEL is based, KMC combined with essential newborn care at birth (including skilled care at delivery, thermal care, exclusive breastfeeding, and early identification and management of health problems) has cut mortality by more than 50%. Since 2011, CEL has established KMC lounges across every district in Uttar Pradesh and more than 400 nationwide. According to Vishwajeet Kumar, chairman of CEL, the expansion has been driven by demand. One of the key challenges for KMC is continuity: while mothers are introduced to the practice when they deliver at a health center, adoption drops sharply once families return home with their newborn. Sustaining KMC requires a family to temporarily reorganize itself: to enter an emergency mode for the sake of the newborn, in ways that may run counter to deeply ingrained cultural norms.
Adoption rates remain low even in developed countries. But in India, Kumar’s team is seeing rates of 80 to 90%. That success is attributed to the team’s ability to understand the cultural barriers, and to find effective ways around them. In rural India, the mother is often expected not only to care for her newborn, but also for the elderly and the livestock. “She is a superwoman, but she systematically undermines her own needs and the needs of her child,” says Kumar. “For lower-class families, the mother’s time is extremely precious. Families need to distribute her effort until the baby is out of danger. It’s very hard for the family to shift their roles.”
Fathers, while often removed from daily domestic tasks, typically control family logistics and finances, explains Kumar. “They are the gatekeepers. When a new intervention is brought in, their approval is necessary.” The team has observed that when fathers support KMC and arrange for other family members to cover the mother’s usual duties, she can direct her energy towards the 8 or more daily hours of skin-to-skin contact and breastfeeding that KMC recommends. This shift also gives fathers their own chance to bond with the baby. “We see that fathers are willing to step out of their usual normative role and engage with their babies,” says Darmstadt. “Everyone benefits when those normative boundaries and power dynamics are suspended.” Kumar has also found this temporary family reconfiguration to be effective. “Babies cut through all those norms; they reconfigure a family’s heart,” he says.
For KMC to scale more widely across India, and perhaps other rural communities in low and middle income countries, it needs community champions: families who have tried it and are willing to share their experience. “The missing link is the community. We’re saying: if you have a good experience, pass it on,” Kumar says. An amplifier can be anyone — a shopkeeper, or the oldest grandmother in the village.
Still, more work needs to be done to sustain KMC, from identifying the low birth weight babies who can benefit, ensuring access to KMC from birth, and calibrating appropriate care by birth weight. “We want to make sure KMC is integrated and taken up by the system,” says Kumar. “The healthcare system within facilities to the public health systems within communities are not connected. We’re trying to build that bridge.”
“KMC is very disruptive,” he adds. “If designed right, it can set a new normal.”