The advent of family-centered care in neonatal settings, such as at UCLA Medical Center, Santa Monica, is encouraging parents like Brinda Ghiya (above) to take a greater role in the direct care of their hospitalized infants and to spend more time in physical contact with them.
In an age of high-tech medicine, low-tech strategies are getting hospitalized newborns off to the best possible start in life.
On a spring morning, Brinda Ghiya cradles her 4-month-old daughter Ameya in the neonatal intensive care unit (NICU) at UCLA Medical Center, Santa Monica. The infant was born in December, and she weighed 1.9 pounds and measured just under 13 inches. Ghiya has been reading to Ameya, who watches her mother’s face intently. Now an old hand in the NICU, Ghiya calmly and carefully adjusts her baby’s feeding and oxygen tubes and places her back into her isolette, swaddling her as the baby drifts to sleep. Throughout the day, Ghiya will feed her daughter, take her temperature, change diapers, provide breathing treatments and assist with other caregiving duties.
“From pretty early on, we got the sense that we were part of the team here,” Ghiya says. “A few days after she was born, I was still in the postpartum unit, and my husband came into my room and said, ‘I changed her diaper.’ I thought, wow, they let him do that! It’s been incredibly gratifying to be so involved in her care. I can’t imagine being here all these months and sitting on the sidelines.”
It wasn’t always this way for new parents with babies in a neonatal unit. While lifesaving technology still girds childbirth and neonatal services, medical professionals are taking a step back, when possible, to foster a decidedly more natural and nurturing atmosphere for babies, mothers and families. One example is in the NICU at UCLA Medical Center, Santa Monica, where a program and study are underway to evaluate the benefit of encouraging parents, like Ghiya and Akash Ghiya, to provide more of their babies’ care during the hospitalization.
That program is part of a larger movement, called family-centered care, which is flourishing in maternity and neonatal settings. Family-centered care invites parents to be part of the decision-making process throughout the hospital stay. Whenever medically possible, new mothers are encouraged to spend the first hour after childbirth holding their newborns, cuddling skin-to-skin and bonding. Breastfeeding is promoted and supported with old-school strategies that are likely to foster success. The opinions and abilities of dads or partners are respected and encouraged.
This softer touch holds the promise of enhancing both clinical outcomes and patients’ experiences during a monumental life event, says Lydia Kyung-Min Lee, MD, PhD, a UCLA maternal-fetal medicine physician. “As an academic tertiary-care center, UCLA has all of these resources. So when something goes wrong, we have everything that is needed,” she says “But we are also asking: Can we make the environment more adaptable and more personalized?”
Parents are their children’s first and most important caretakers — a philosophy on full display at UCLA. “Over the past few decades, there have been so many technological advances,” says Animesh Sabnis, MD, assistant clinical professor of pediatrics and neonatalogy. “But we also have seen the emergence of the patients’ point of view, which has rebalanced the authority of the physician and transferred it to the patients.”
The desire to include more touching, cuddling, conversation and quiet moments into the whirlwind of hospital care is not a repudiation of medical technology, Dr. Sabnis adds. “One doesn’t have to come at the expense of the other.”
DESPITE DOCTORS’ BEST EFFORTS TO FORESTALL BIRTH, Ameya Ghiya came into the world at 25 weeks gestation, a perilous time in fetal development. She was on a ventilator for a month, but gradually she began to grow and thrive. “At first, we didn’t know how we’d get through each week,” Ghiya says. “There were alarms going off at her bedside all the time. There was a huge learning curve just knowing what to worry about and what not to worry about.”
The Ghiyas asked questions, and they received answers. They were encouraged to help with the baby’s care as much as possible, even when it might have been easier for the professionals to handle things. “We took comfort from understanding things,” Ghiya says. “At first, we were afraid to touch her, but the nurses helped give us the confidence that we could do it.”
Over the next year, more parents with infants in the NICU will be encouraged to assume some of the infants’ care. UCLA Medical Center, Santa Monica is part of a multi-center clinical trial, headed by the neonatal team at UC San Francisco Benioff Children’s Hospital, to assess a protocol called Family Integrated Care. The program, which was created in Canada, advances the idea that parents of infants in the NICU can become the primary caretakers of their babies during hospitalization. Studies suggest infants cared for by their parents grow quicker, recover better and go home with parents who are more confident, says Heather Hackett, RN, RNC-NIC, who is a co-investigator of the study. The UCLA Health Auxiliary Board of Directors is funding UCLA’s arm of the study.
“Even when the babies are small, fragile and sick in the NICU, we want the parents to be true partners in their care and engaged in their care,” Hackett says. “Ultimately, we think it will be better for them and better for the baby.”
Nurses will begin to teach caregiving tasks to parents of babies born at less than 33 weeks’ gestation. These will include preparing and administering gavage feedings, taking the baby’s temperature and changing diapers. Parents will use a mobile app to record their own feelings regarding stress as well as data on the baby, including the baby’s weight, time spent breastfeeding, pumping milk or holding the baby skin-to-skin. Parents can keep a journal that includes a daily photo.
In addition, parents will be offered daily education sessions in a classroom on topics such as infant development, respiratory care, ventilator use and breastfeeding. “Parents will have an opportunity to sit down with other parents and ask questions,” Hackett says. “Nurses and physicians will do the same things they do now. But we want parents to be more involved where they can be.”
“At first, we were afraid to touch her, but the nurses helped give us the confidence that we could do it,” Ghiya says.
While many women today may spurn the idea of “natural childbirth” and instead opt for pain medication and the easiest childbirth experience possible, once the baby is born, many maternity bedsides today look more like 1917 than 2017. As long as there is no medical crisis, a newborn is quickly placed on the mother’s bare chest and stays there until breastfeeding occurs, Dr. Lee says.
“The first hour after birth is what we call the golden hour,” she says. “The golden hour is for mom and baby. There is no reason for baby to be off mom’s chest. Baby will try to find the nipple. Mom and nurse will help position the baby’s head near the nipple, and baby is programmed to open his or her mouth and find the nipple. It’s amazing.”
Once the baby starts latching on, the maternal brain releases the hormone oxytocin to breast tissue to start milk production and release. Moms are encouraged to breastfeed eight times in the first 24 hours, which, research shows, helps to establish the practice. “If you provide that good start, it will prevent breastfeeding problems later,” says Georgann Abraham, RN, UCLA Health BirthPlace coordinator.
Scores of studies have attested to the benefits of breastfeeding, for both babies and mothers. A study published recently by Grace Aldrovandi, MD (FEL ’92, ’94), professor of pediatrics and infectious disease, found that 30 percent of the beneficial bacteria in a baby’s intestinal tract comes directly from breast milk, and another 10 percent comes from the skin on the mother’s breast. Intestinal bacteria help a baby digest food and strengthens the immune system. “We know from animal-model systems that if you get good bacteria in your gut early in life, you’re more likely to be healthy,” Dr. Aldrovandi says.
The American Academy of Pediatrics recommends that infants be breastfed exclusively for about the first six months, followed by continued breastfeeding as complementary foods are introduced, with continuation of breastfeeding for one year or longer as mutually desired by the mother and infant. But only about half of U.S. infants are still breastfed at six months of age, according to the national 2016 Breastfeeding Report Card. “As a society, breastfeeding is almost something we need to relearn,” Abraham says. “We want to go back to basics and show women that it does not have to be that hard.”
Studies show that placing the baby skin-to-skin on the mother’s chest immediately after birth increases breastfeeding rates, as well as boosts parent-child bonding, Dr. Lee says.
“Traditionally, the baby comes out and is taken across the room. The mother can’t see the baby and wonders what’s going on,” she says. “But if you put the baby on mom’s chest, mom starts talking to the baby. The baby cries for a shorter time, grimaces less, the heart rate slows down.”
Skin-to-skin contact, also known as kangaroo care, first began as a strategy to help premature or low-birth-weight babies grow and thrive. The concept is now being applied to normal, healthy babies, and parents — including spouses or partners — are taking to it.
“Patients look pleasantly surprised that we openly talk about it and offer it as an option,” Dr. Lee says. “We tell moms to do skin-to-skin contact as much as they can. Dads can do it, too.”
OTHER CHANGES ARE ALSO AIMED AT HELPING MATERNITY PATIENTS AND NEW PARENTS feel less like bystanders during a hospital stay. One new idea involves allowing a mother to see her infant born during a Cesarean section, if she wishes. A clear drape is positioned between her chest and abdomen so she can observe the baby when the newborn is taken from the uterus. If mother and baby are medically stable, immediate skin-to-skin contact is also encouraged during a C-section birth.
“The first thing we ask when we bring in something new is whether or not it’s safe for the mother and baby. If no one has any objections, and there is no medical reason not to do it, and if mom says she wants it, we do it,” Dr. Lee says.
Since some patients have expressed a desire to use midwives or doulas, those requests also are honored. In fact, maternity and neonatal care has been reconfigured as team-based services that put the mother at the center of decisions, Dr. Lee says. The team can include obstetricians, pediatricians, nurses, midwives, lactation consultants, social workers, the patient and family members.
“In childbirth, the mother is the most important person,” Dr. Lee says. “She is the center of the team. I tell mothers: Tell us what you want to do, and we’ll let you know what the options are. It’s a shift from the old model that one doctor was available for everything and made all of the decisions.”
Ameya Ghiya came into the world at 25 weeks’ gestation and was on a ventilator for her first month of life. After more than six months in the NICU, Ameya’s parents brought her home in June.
Parents’ opinions are increasingly valued throughout maternity and neonatal units. As part of the Family Integrated Care program, for example, NICU parents will be invited to lead the daily rounds, the daily conference when caregivers gather at the bedside to discuss the patient’s progress. Parents will kick off the meeting by providing information on how old the baby is, the baby’s weight, feeding information and anything else they’ve observed. “Difficult and complex decisions are made in the NICU,” Dr. Sabnis says. “I hope to understand better what the flaws are in those conversations in order to improve their overall quality. Not only will this help babies, but it also will help parents.”
Dr. Sabnis is specifically studying NICU conversations between parents and healthcare providers to learn how those conversations can be improved for families who are under exceptional stress. “Clinical measures of care — such as how many patients we cure — are obviously important,” Dr. Sabnis says. “But the experience of being ill or the experience of having a baby, even a healthy baby, can have its own burden. Alleviating those burdens has health benefits for babies and parents. Family-centered care is hearing the voices of the people we are taking care of.”
When Ameya Ghiya goes home, she still will require supplemental oxygen. That will be no problem, her mother Ghiya says. The ability to help care for their daughter in the hospital has made the parents confident they can handle her care without the professional safety net. “During that first week of her life, I didn’t know how we were going to get through it,” Ghiya says. “Without a doubt, we will be comfortable caring for her when she goes home. If I hadn’t had this experience caring for her in the hospital, I think I would be terrified.”
Shari Roan is a freelance writer specializing in healthcare.