Jenn Hemmer (left) - her 4-week-old daughter, Riley, in her arms - speaks with pediatrician Elizabeth Hasert Aug. 2 at Madigan Army Medical Center on Joint Base Lewis-McChord, Wash., about healthy baby weights during one of the hospital's Moms Own Milk group sessions. MOMs group is a twice-weekly organized effort by the MAMC lactation consultant office to bring breastfeeding mothers together with staff members who provide education on the topic, support, weigh-ins and advice concerning every aspect of breastfeeding. (U.S. Army photo by Sgt. Christopher M. Gaylord, 5th Mobile Public Affairs Detachment)

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There’s little research on how mom’s with newborns in the NICU cope. But by all accounts, their needs are being ignored.

By Thomas Goldsmith

After a woman gives birth, the spotlight tends to shift to the newborn, sometimes leaving the mother herself in need of critical help even as she cares for her baby.

Dr. Alison Stuebe, associate professor of maternal-fetal medicine at the UNC-Chapel Hill School of Medicine, doesn’t pull punches when she discusses how a new mother’s needs can be neglected when babies end up in neonatal intensive care units, or NICUs.

When babies are in the NICU, moms often find they are not getting their own needs met. Photo credit: Michael Bentley, flickr creative commons

“In all of perinatal care, once the baby is out, everyone’s focused on the baby,” she said in an interview, noting that she is deliberately offensive putting it another way.

“Once the candy is out of the wrapper, the wrapper is cast aside.”

Stuebe is lead investigator in Care4Moms, a federally funded, $900,000 study of the situations of mothers with medically fragile infants. Researchers in the interdisciplinary team, led by the UNC Center for Maternal and Infant Health, say that this population of mothers is significantly understudied.

The Care4Moms study involves 7,000 women who gave birth at the North Carolina Women’s Hospital during a two-year period. Researchers will analyze the care mothers of fragile infants received compared to mothers of children cared for in the well-baby nursery.

“Mothers of medically fragile infants must recover from birth while at the bedside of a critically ill newborn,” Stuebe said in press information. “These challenges are compounded by the fact that data suggest these women are more likely to have birthed by C-section and experienced complications and may have underlying chronic health problems, such as high blood pressure and diabetes.

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“Moreover, many mothers of medically fragile infants live hours away from where their infants are hospitalized.”

For example, Stuebe said in the interview, a mother with a sick child who is cared for in UNC’s NICU may have to commute a couple of hours to and from Robeson County to be with the infant. All sorts of other complicating factors can affect women in this situation, she said.

“Of the moms with a baby that stays in NICU for more than three days, half have delivered by C-section and they are discharged on day four,” she said.

“It’s a really, really fraught situation, Even if you live 10 minutes from the hospital, you still can’t drive. Even if she had a vaginal birth, she may have a laceration. Her milk is starting to come in and she’s trying to figure that out.”

Other family members, however eager to help, may themselves face real obstacles.

“I think dads absolutely are struggling as well,” Stuebe said. “They may be home with the other kids. And they’re trying to be there for her and for the baby.”

Several participants in the Care4Moms study, including Sarah Verbiest, director of UNC’s Center for Maternal and Infant Health for 11 years, have a long track record of advocating for patient-centered, team-based best practices for mothers and infants.

“The team supports families through the highly emotional and complex world of prenatal infant diagnosis, prognosis, treatments, and specialty services,” Verbiest wrote in “Starting Life with Coordinated Care,” an article in the March/April 2009 edition of the North Carolina Medical Journal. “A primary goal of the program is to help parents learn how to navigate the health-care system and become advocates for themselves and their babies.”

Verbiest is also principal investigator on what’s known as the 4th Trimester Project, a UNC effort to bring together mothers, health care professionals and others with a stake in the issue of mothers’ health needs that may be neglected during the first three months after a baby is born.

Both Care4Moms and the 4th Trimester Project are concerned with issues such as breastfeeding issues, mood disorders after birth, infant sleep practices, incontinence, a return to tobacco use and inability to receive affordable contraception.

Some of the ideas that are emerging as the study continues this fall:

  • Identifying the specific health problems experienced by mothers of medically fragile children.
  • Having a nurse visit the home of the postpartum mother to check her health status.
  • Assigning a UNC hospital medical health number to the mother when the baby is admitted for treatment, making it easier for the mother to receive postpartum care.

Project researchers will interview new moms of medically fragile infants about how well the health-care system serves them and their babies. The team will also interview UNC doctors, nurses and other providers to get their takes on what’s being offered mothers — and the services that aren’t available, but should be.

“Our hunch is that these moms wind up in the ER,” Stuebe said. “There hasn’t been a lot of work in this area. There’s a tremendous amount of attention paid until the baby’s out of the wrapper.”

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Learn more:

UNC Center for Maternal and Infant Health: www.mombaby.org/care4moms/
4th Trimester Project: 4thtrimester.web.unc.edu/

Additional researchers include Renee Ferrari, Michelle Jonsson-Funk, Erin McClain, Katherine Bryant, Patricia Bojakowski and Marisa Domino.

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Thomas Goldsmith

Thomas Goldsmith worked in daily newspapers for 33 years before joining North Carolina Health News. Goldsmith is a native Tar Heel who attended the UNC-Chapel Hill, and worked at newspapers in Tennessee...