Personalized care model enhances preterm babies’ development

NICU baby with his mother
Christian, born at 26 weeks gestation, has lived in the NICU since May. (Photos: Katherine C. Cohen, unless otherwise noted)

November 17, 2017 is World Prematurity Day.

From a cozy, dark and quiet existence, a preterm baby is forced out into a harsh, bright and noisy environment. Instead of being comforted and held securely by their parents, preemies are poked and prodded, hooked up to machines and exposed to jarring sights and smells as their developing brains struggle to realign.

Each year, an estimated 15 million babies around the world — 1 in 10 — are born prematurely. Medical advances enable more of them to live, but often with medical and developmental problems.

Heidelise Als, PhD, director of Neurobehavioral Infant and Child Studies at Boston Children’s Hospital, has worked for more than 30 years to create better outcomes, developing the Newborn Individualized Developmental Care and Assessment Program, or NIDCAP.

The NIDCAP model of care seeks to support the development of fragile newborns and reduce their stress. In a series of studies, Als and colleagues at other hospitals have documented its successes: improvements in lung function, feeding and growth; shorter lengths of stay; a reduction in brain hemorrhage and improved brain function and structure, with brain effects lasting until at least 8 years of age. Benefits have been documented even in medically fragile, very preterm infants and infants with severe intrauterine growth restriction.

In the beginning

In the late 1960s, Als studied for her PhD thesis at the University of Pennsylvania the relationship between healthy, full-term newborns and their mothers, and how the baby influences the interaction. A pediatrician invited her to come observe in a newborn intensive care unit (NICU).

NICUs themselves were still in their infancy, and Als, was deeply affected by the premature babies she saw. “Many were active, trying to fight the ventilator, trying to curl up,” she says. “Yet they were stretched out and tied down so they wouldn’t ‘interfere’ with what needed to be done to help their lungs.”

She wondered: “How can we make use of their natural competencies, rather than undermine them?”

In 1973, Als joined the Child Development Unit at Boston Children’s, founded just one year earlier by the famous pediatrician T. Berry Brazelton, MD.

NIDCAP founder Heidelise Als, PhD
Heidelise Als, founder of NIDCAP

Brazelton was also interested in the competencies of newborns and became a key mentor. He brought Als into the NICU at the Boston Lying-In Hospital, which later became part of Brigham and Women’s Hospital. There, she spent two to three years just observing and cataloguing preemies’ behaviors, usually coming in the evening.

“I was trying to see, ‘When are they most calm and relaxed? When are they getting stressed?’ Then I tried to figure out what would be feasible to help them.”

The earliest intervention

One of the NICU nurses was interested in what Als was doing. When Als noted distress signals from preemies lying on their backs, she turned babies on their sides and built a soft, raised “mother mound” that babies could grasp with their hands and feet as they slept. “Babies want to hug something, curl around something,” says Als.

Als with T. Berry Brazelton, early 1970s (courtesy Samantha Butler)

They tried out other interventions, like covering the incubator to shield babies from the light, approximating the dim surroundings of the womb, or blanket “nests” to help babies feel more securely cradled.

Eventually these experiences led to NIDCAP. Today, NIDCAP has been adopted around the world through an international network of training centers and a nursery certification program.

NIDCAP isn’t any single intervention. Instead, doctors, nurses and therapists trained in the NIDCAP model of care ask one leading question: “What might, in this moment, make things better for this baby?”

Taking the baby’s perspective

NIDCAP-trained professionals begin by observing newborns, from delivery to hospital discharge and into the home. They look for various cues to shape a caregiving plan that helps infants acclimate to their environs.

Preemies give plenty of cues. Obvious signs like screaming and crying may be difficult for weak, tuckered out preemies hooked up to ventilators. Instead, changes in skin color, breathing patterns, facial expressions and body movements are recorded. A red face can mean the baby is upset. A pinching of the mouth can indicate discomfort. Sticking a hand out can indicate “wait — slow down.”

“If you saw an older child or an adult doing these things, you’d think, ‘Gosh, they’re having a really hard time,’” says Samantha Butler, PhD, a psychologist and member of Als’s lab at Boston Children’s. “Somehow it’s harder to convince people that babies are trying to tell us the same thing.”

NIDCAP care in the CICU
In the cardiac intensive care unit, a calm and alert Abigail is held by her mother, coached by Als and Butler, after undergoing open heart surgery. Below, Butler confers with Als during NIDCAP rounds.

Samantha Butler with NIDCAP founder Heidelise Als

Interventions can include altering feeding and care schedules to match the baby’s sleep/wake cycle, or helping a parent hold the baby “skin to skin” during a medical procedure — whatever will reduce stress and bring out the baby’s own strength and competence.

As the baby’s needs change, the interventions will need to change too. “A model of care that isn’t dynamic is a failure,” says psychologist Gloria McAnulty, PhD, a member of Als’s lab.

Spreading the NIDCAP model

Worldwide, there are 23 certified NIDCAP Training Centers and more than 3,000 NIDCAP-certified professionals; more than 300 were personally trained by Als. Since 2011, seven nurseries (three in the U.S., one in Israel and three in Europe) have received NIDCAP certification.

A much larger number of NICUs, including the NICU at Boston Children’s Hospital, have adopted at least some NIDCAP features and practices, but face barriers to fully integrating it into daily care. To be certified as a NIDCAP Nursery, a unit must have at least one full-time certified NIDCAP professional to train and support caregiving staff. Ideally, caregivers should have protected time away from the bedside for this training.

“We are proud to provide developmental care for our patients when we have the opportunity,” says Anne Hansen, MD, MPH, medical director of Boston Children’s NICU.

The most fragile infants

Als and her colleagues have shown that NIDCAP can help improve outcomes even in very high-risk settings. Butler is part of a four-person team providing NIDCAP services in Boston Children’s Cardiac Intensive Care Unit (CICU), where many babies are recovering from open-heart surgery.

“We help families understand their child’s development and how different types of developmental care would be helpful to highlight the strengths of that baby,” Butler says.

NIDCAP principles in action

Often babies in the CICU appear to be sleeping and tuned out, but Butler has surprised families by closing the door and shutting the lights off, causing babies to open their eyes.

“That’s a great experience for the family,” says Butler. “Attachment and bonding are important to start right at birth.”

Tapping parents as caregivers

Als would like to structure NICUs for maximal parent–infant contact. While many NICUs allow parents to be present, “usually, the parent cannot hold the baby until the baby is ‘stable’ — not when babies need it most,” says Als. “Ideally, we want 24-hour holding. Even a 16-year-old mother will do everything for a baby if we support her.”

In the CICU, Butler and colleagues have found ways for families to cradle or hug their babies when it’s too risky to pick them up.  “Babies expect you to hold them,” says Butler. “We have come up with protocols to ‘mimic’ holding. Parents can put a hand on the baby’s head and feet to give them a feeling of being contained. In the CICU, most babies are in full-size cribs, so parents can sometimes lie next to them.”

Applying NIDCAP principles: Making a baby feel secure by holding her head and feet.
Adaleigh in the CICU recovering from open heart surgery

Als believes NIDCAP can relieve stress for medical staff, too, by allowing parents to be part of the care team and creating a calmer environment.

“My dream is an incubator-free NICU,” she says. “I may not live long enough to see that, but that’s what we’re aiming for. It’s a ‘win-win’ proposition.”

Sukanya Charuchandra contributed to this post.

Read more about NIDCAP and the power of touch.