Preemies and Families: Is it Time for a Do Over?
As new technologies make it possible for babies delivered as early as 24 weeks gestation to survive—and later thrive—how do we equip families for the enormous challenges of caring for preemies? LearnNow editor Emily Gaines Buchler spoke recently with psychologist Martha Vibbert, the executive director of the SPARK Center at Boston Medical Center, a program revolutionizing how we care not just for preemies but also their families. Here, Dr. Vibbert talks about what it’s like for families, and how our systems need to evolve—fast.
Q: At SPARK, you work with parents and practitioners caring for preemies every day. What risks and challenges do these preemies face, especially those born before 32 weeks gestation?
A: Time in the womb is a critical time of development. And babies born too early can face a range of complications converging at once—from respiratory and neurological to developmental delays. When one system goes awry, other things go awry, too, leading to trouble feeding, digesting, breathing, bonding with parents—so many of the things most full-term babies can accomplish, for the most part, on their own.
As a psychologist, I look at this through the lens of family stress and attachment. Prematurity complicates the process of development for the entire family. The trauma of premature delivery and the stress of having a baby live in the NICU [neonatal intensive care unit] for up to three months may complicate parent-child bonding.
Q: In the last few years, the topic of preemies—and the complications of preterm deliveries—has become a hot topic in research. Why?
A: New and better medical technologies are evolving all the time, including improved approaches to respiratory, nutrition, and neurology in newborn preemies. There are even surgical techniques on the developing fetus. Overall, these therapies have dramatically increased our ability to save babies who never would have survived even five or ten years ago. Survival rates go up every year. Studies show, for instance, that the survival rate of babies born at 24 weeks grew from 66 percent in 1995 to 88 percent in 2005. That’s a steep climb.
As we get better with the new techniques to save these babies’ lives, we have an ethical obligation to figure out what they need, not just those first few months in the NICU but throughout childhood and beyond. We have created a new challenge for ourselves: how to address the medical needs of children who used to not make it past a few days of life. What we do know about those infants we ‘graduate’ from the NICU is that by intervening early, we can improve outcomes for babies and families, and save the system lots of money down the road.
Q: What’s it like for the parents of these preemies?
A: Any family would be overwhelmed by the 24/7 job of taking care of a preemie—the constant monitoring of calories, weight gain, breathing, plus the ongoing worry of it all. Even after a preemie gets out of the NICU, the intensity continues, with parents shuffling to and from as many as five appointments with five different doctors every week, especially when and if the preemie gets sick. The parents are the ones connecting the dots, making sense of any conflicting advice, and keeping everyone on the same page.
Q: What about parents who have to go to work so they can pay bills—most parents, for that matter? How can parents keep things afloat with these incredible demands?
A: While it’s hard for all families, lower-income families face the most challenges. They may not have the ability to quit work or cut back on their hours or call grandma to come in and help the family stabilize for five months. Grandma’s probably working, too. Many of these lower-income parents are totally on their own, trying to juggle the endless monitoring, the appointments, and medication regimens with multiple jobs, evening work shifts, unstable housing, mounting bills, other kids to care for, and everything else.
Parents may find it hard to keep up with specialty care appointments, such as the neurologist, audiologist, or developmental therapy session. They prioritize the primary care provider or sick visit, not realizing that all are equally crucial. Healthcare hasn’t traditionally done a very good job of coordinating care and making things convenient and accessible for babies and their families.
Q: So you see a huge disparity between preemie care for low-income families and those with more means?
There are multiple disparities: if you are poor and a member of a racial/ethnic minority, you have a higher chance of delivering a premature and low birth weight baby who then has a greater risk of developmental and health problems. And you have a greater risk of being unable to keep up with all the specialty care and interventions your baby will require.
There can also be a big disparity in care because, without financial resources, how can a family juggle it all? The stressors and challenges of managing the 24/7 care of a premature infant make families vulnerable to a whole cascade of problems: the parent quits a job to care for the infant; the parent can’t pay bills; health insurance lapses; and then the family loses their housing. It can be catastrophic. And it’s simply not fair to expect these families, or any family, for that matter, to take on the burden alone. If we’re going to save babies in the NICU as a society, we’re going to have to do a better job of planning for their care and supporting their parents, especially when those families live in poverty.
Q: Tell me about the SPARK Center. How does it differ from other models of preemie care?
A: Centers like SPARK, which stands for Supporting Parents and Resilient Kids, are few and far between. SPARK is a center-based, hospital linked program that offers on-site nursing, nutritional, and both developmental and mental health care. We provide all of this within a convenient childcare format, five days a week year-round, so our babies get concentrated services in one place—and parents can get respite, keep their jobs, maintain their own health, and get the encouragement, support, and compassionate parenting guidance they need.
Parent support often gets overlooked. But the reality is that it’s essential because parents understandably face high rates of depression, anxiety, and stress. SPARK has evolved as a national (and international) model of integrated care for fragile children, especially those born into poverty. Our system integrates with each child’s electronic medical records, and pediatric practitioners can have real-time exchanges of clinical information with our specialists and families. This enables everyone to stay on the same page and keep a close eye on how a child is doing. In other models, it’s up to parents to keep everyone informed. That may not be realistic.
Q: How can we use what’s happening at SPARK to improve preemie care elsewhere—and better support these premature babies and families?
A: Our systems need to evolve, especially as more babies survive. We need to think outside the box and not default to simplistic, once a week home-based models, which may work for some families but not all. Preemies with complicated challenges need more, and so do their parents.
We also need a more child-driven system instead of a funding-driven system. Treatment decisions should be based on a child’s evolving needs and data about how to optimize long-term outcomes. What happens too often is that a child’s treatment plan is defined by whichever entity will foot the cost. That’s just not right. Every child deserves quality care, whether the family can pay or not.
To post or reply to a comment below, please enter your email address here if you’re not yet part of LearnNow’s network.