What Parents Can Do to Help Preemies
Hospitals are enlisting moms and dads to work full-time with their premature babies in the NICU
Gillian Chassells and Patrick Giles with their son, Leo, who was born after 24 weeks of gestation. Leo spent four and a half months in the neonatal intensive care unit at Toronto’s Mount Sinai Hospital, with his parents acting as his primary caregivers.PHOTO: IAN PATTERSON FOR THE WALL STREET JOURNAL
A new approach to caring for premature babies in those critical first few weeks or months is being tried out in a number of hospitals.
The idea is to put parents in charge for at least eight hours a day of taking care of their babies in the neonatal intensive care unit, or NICU. Typically, babies born prematurely, who might weigh little more than a pound, are considered too fragile for anyone but highly trained doctors and nurses to care for.
“Yes, they are fragile. But parents aren’t the source of bad things that can happen, they’re the source of good things that can happen,” saysDr. Douglas McMillan, a neonatologist at IWK Health Centre in Halifax, Nova Scotia, one of the study sites.
The study, being conducted at 20 hospitals in Canada and 10 in Australia and New Zealand, follows a pilot program at Toronto’s Mount Sinai Hospital that involved 42 premature newborns. The outcome: Preemies cared for by their parents gained 25% more weight and were nearly twice as likely to be breastfeeding when they went home as those taken care of primarily by nurses. Infections, 11% in the nurse group, fell to zero in the parent group.
Gillian Chassels and Leo in the NICU at Toronto’s Mount Sinai Hospital. Doctors encourage caregiving parents to hold their preemies skin-to-skin, which has been found to set up physiological changes in the baby, such as stimulating growth hormones and making their breathing more regular. PHOTO: PATRICK GILES
In the NICU, Gillian Chassels turns Leo over and takes his temperature under the arm. Caring for such tiny and fragile infants can be daunting, Ms. Chassels says. ‘Thankfully his nurse was right next to me, teaching me what to do,’ she says. PHOTO: PATRICK GILES
Doctors hope the study, which is due to wrap up in August after more than two years, will verify the pilot program’s positive results. They suggest that mothers and fathers get to know their babies better than nurses do and that physical contact with the parents may be beneficial while the infant’s immune system is developing.
“The pilot has really shown promising results, and it’s an area of research that we critically need to make advances in,” saysDr. Catherine Spong,deputy director of the U.S. National Institute of Child Health and Human Development, part of the National Institutes of Health.
Researchers at the University of California, San Francisco are seeking to launch the first U.S.-based trial of the new approach, called Family Integrated Care, and have applied to the NIH for funding.
About one of every nine newborns is premature, or born more than three weeks before the normal 40 weeks of gestation. Medical advances have improved survival rates of the youngest preemies, and today, newborns as young as 22 weeks are being given care. About 75% of infants born before 29 weeks survive to go home with their parents.
Noah Bigaignon was born at 27 weeks of gestation at Toronto’s Mount Sinai Hospital. The infant, one-week old in this photograph, spent three months in the NICU. His father, Nicolas Bigaignon, a lawyer, spent six to eight hours a day with his infant after work. PHOTO:ANNE MARIE DIME
Noah Bigaignon, who spent three months in the NICU after a premature birth, is seen in this January photograph at 14 months old. PHOTO:ANNE MARIE DIME
Most premature babies grow up healthy, but they face greater risks than full-term babies of developing long-term disabilities, ranging from cerebral palsy and vision and hearing impairments to learning problems. The youngest born preemies are most vulnerable.
Knowing the risks, many parents of preemies suffer from anxiety and depression during their babies’ hospitalization. Some show symptoms of post-traumatic stress disorder after the baby comes home, research has shown.
Involving families in NICU care was found to reduce parental stress levels during the 14-month pilot program, says Shoo Lee, chief of pediatrics at Mount Sinai, who led the group that developed the new approach. “This started because parents told me they feel hopeless, helpless,” he says.
Dr. Lee says he saw the possibilities for the new approach after observing neonatal care in Estonia, where a shortage of nurses in the 1970s led hospitals to require mothers to be admitted along with their premature newborns as their caregivers. NICUs noticed that infants looked after by parents grew faster, and the policy became permanent, he says.
A staff-parent team from Mount Sinai traveled to Estonia in 2010 and spent six months designing a plan for the Toronto pilot program, which they presented to Dr. Lee in a thick binder. “They’d thought through everything,” he says.
Parents participating in Family Integrated Care receive hands-on training from nurses in tasks such as bathing and diapering a newborn who looks dangerously fragile to handle, taking the baby’s temperature, reading signs of distress and responding to heart-rate, breathing or oxygen alarms. They hold their babies skin to skin, against their bare chests, as much as possible, a technique shown to be beneficial. Nurses oversee the parents and are responsible for all IVs and other technical procedures.
“Within the first three days I learned everything I needed to do,” says Cynthia Schaeffer, whose son, Joshua, was born after 26 weeks of gestation at just over 2 pounds. “I started feeling like a mother,” says the Toronto resident, who participated in the pilot program at Mount Sinai.
Leo, who was born after 24 weeks of gestation and spent four and a half months in the NICU at Toronto’s Mount Sinai Hospital, is seen here at 19 months of age. His mother, Gillian Chassells, who acted as a primary caregiver for Leo in the NICU, says the boy is severely hearing impaired, a disability of some preemies born as early as Leo was. He wears hearing aids and has a private teacher for the deaf. He is ‘the happiest boy in the world,’ his mother says. PHOTO: IAN PATTERSON FOR THE WALL STREET JOURNAL
Gillian Chassels gave birth to twins at 24 weeks. The first twin, Sarah, survived for an hour and a half. Her brother, Leo, was born a few days later on Sept. 1, 2013, and spent four and a half months in the NICU. Ms. Chassels, a former teacher in Toronto who now stays home with her son, participated in the multi-hospital study.
“When I first gave Leo a bath he was just over 3 pounds,” says Ms. Chassels. “Thankfully his nurse was right next to me, teaching me what to do.”
Parents in the program also are trained to attend morning rounds, where they present their child’s progress and setbacks to the medical team.
“The thing that was wonderful about rounds was I felt they really valued what I was saying,” Ms. Chassels says. One morning, she told the team that Leo seemed less active and responsive than usual. “No one else had noticed,” she recalls. “They said, ‘We believe you. OK, full work-up.’ ”
“Parents get to know their baby really well,” says Dr. Lee. This can help get treatment started early, which aids in healing, he says.
Nicolas Bigaignon, a Toronto lawyer whose son, Noah, was born at 27 weeks of gestation, spent six to eight hours a day at Mount Sinai’s NICU after work. “You build a network because no one else understands what you’re going through,” he says. Noah spent three months in intensive care at the hospital.
Cynthia Schaeffer and her son, Joshua, who was born after 26 weeks of gestation at Toronto’s Mount Sinai Hospital. He weighed just over 2 pounds. After training to be his primary caregiver, ‘I started feeling like a mother,’ Ms. Schaeffer says. PHOTO: NORBERT DUTRA
To avoid infection in the NICU, parents may be asked to disinfect laptops before using them and to use cellphones enclosed in plastic bags. Many nurses before the pilot study thought parents wouldn’t be able to manage caring for their preemies, but a 27% decline in treatment errors, as measured by critical incident reports, helped to allay those concerns. Still, a few nurses haven’t taken well to the new approach, for instance having to ask a mother for permission to touch the baby rather than the other way around, Dr. Lee says.
Dr. Lee suggests several factors are behind the improved outcomes for babies, including the consistency of care and heightened level of attention by parents, rather than different, rotating nurses. Another benefit: The preemies, whose immune systems aren’t fully developed, are exposed mainly to germs from the parents, picking up their protective bacteria, which helps prevent harmful bacteria found in hospitals from taking hold. Dr. Lee says close contact, through breastfeeding and skin-to-skin exposure, sets up physiological changes in the baby, such as stimulating growth hormones and making their breathing more regular.
“This is a quantum level of improvement in what’s being done” currently, says Dr. Linda Franck, chairwoman of the family-health-care-nursing department at UCSF who will be principal investigator of its planned trial. “When we saw the program in action we came away saying, we want to do this.”
