Lizzie Asher remembers the first time she met Zina Steinberg, PhD, like it was yesterday. Asher was sitting next to an incubator where her tiny 2-month-old son Leo lay sleeping in the midst of wires, tubes and IV lines, all connected to machines monitoring his breathing, heart rate and other vital signs in the neonatal intensive care unit (NICU) of New York-Presbyterian Morgan Stanley Children's Hospital. Steinberg, who spends about 10 hours a week at the unit supporting parents, popped her head into the room and asked Asher to introduce her to Leo, who was born almost four months prematurely after Asher suffered a pulmonary embolism and went into cardiac arrest. Asher spent the first two months of Leo's life in a coma.
"She asked me if I'd touched him yet, and when I said no, she said, ‘Why don't we do that today?'" recalls Asher.
Steinberg helped Asher open the incubator doors and explained where and how to touch her son's fragile skin. Steinberg shared information with her about how her touch could help her premature baby stay warm and regulate his breathing, and could be a first step in parent-child bonding.
"Having her give me all this information and talk me through the experience of touching my child for the first time was so empowering," Asher says. "I started to feel like I could finally do something for my child, even if it was just sitting there for hours at a time with my hand on his back, just so that he knew I was there." After that first encounter, Asher began to rely heavily on Steinberg's support and assistance during the remainder of Leo's five-and-a-half-month NICU stay. This continuity of care in an environment of rotating physicians and nurses can often be a lifeline for families who have gone through traumatic birth experiences and are dealing with the triumphs and setbacks of having their baby in the NICU, says Steinberg.
"The staff is often too busy and too absorbed in an infant's acute care to pay attention to the parent that's not there or the parent that's sitting quietly and afraid to hold their baby," says Steinberg, who along with psychologist Susan Kraemer, PhD, has worked part-time in the unit for nearly 10 years. "What I see as our focus is to hold in mind not just the baby but the family, particularly the mother and father, and to get this family system to thrive so that when the baby comes home, the parents have already learned to cope with their own tensions and anxieties."
Helping families thrive
According to the March of Dimes, 10 percent to 15 percent of all infants born in the United States each year are treated in a NICU — and a small proportion of them end up spending their entire short lives in the unit. While coming to terms with their child's medical condition and navigating complex medical systems, the parents of these extremely fragile and acutely ill infants must also cope with their own feelings of sadness, anger, fear, guilt, loss of control and grief. Several studies over the last decade have found significantly higher rates of post-traumatic stress disorder, depression and anxiety disorders among parents with babies in the NICU than among parents of full-term, healthy babies.
As a result, there is a key role for psychologists, with their training in individual and family assessment, disease process and management, interdisciplinary team care and communication facilitation, to provide support and direct intervention to parents and families in the NICU, as well as the neonatologists and nurses caring for their babies, says Kraemer.
"The traumatically charged nature of NICU life leaves both the medical team and the parents vulnerable to feelings that threaten to overwhelm and lead to difficult and painful breakdowns in communication," Kraemer says. "We work to help people to slow down and step back from the intense feelings of the moment and begin to take the viewpoint of the other."
As psychodynamic, relationally oriented psychologists, Kraemer and Steinberg — who both also work full time as independent private psychotherapy practitioners — approach their NICU interactions with an eye and ear for prior trauma and stressful experiences to explain why parents might be reacting the way they are to an interaction with a nurse, physician, social worker or other medical staff.
"As so many of these parents have suffered years of failed infertility treatments and repeated perinatal deaths, or are even now watching vigilantly over a fragile newborn — delivered at 24 weeks and weighing less than one pound, whose twin died in utero or immediately after birth — constant care needs to be given to the long shadows of loss that stalk the NICU," Kraemer says. "Bearing all this in mind, we pay careful and close attention to how the parents' traumatic experiences are processed, looking for coping and resilience at each step so that the parents are better able to engage with their infants, no matter how sick."
That's important, the two psychologists note, because several studies have found that early individualized family-based interventions — particularly those that promote parental competence and confidence — reduce maternal stress and depression and increase maternal self-esteem, leading to more positive early parent-preterm infant interactions (Early Human Development, January 2011).
In addition to working with families individually, Steinberg also co-hosts a weekly NICU support meeting with Peter Fair, one of the nurses on the unit, where parents can meet other families with babies on the unit and draw on one another for information, advice and encouragement.
"You never know who will show up or what will happen each week, but almost all the time, it's impactful," Steinberg says. "The parents — moms and dads — feel less isolated and some say, less ‘crazy' when they can share their experiences. They might cry, but also, importantly, they even laugh and tell war stories and share tips."
The group, she says, helps dispel the pervasive sense of guilt and equally potent sense of shame that parents often feel — shame at not getting pregnant easily, at not carrying a baby to term or having a healthy newborn.
"It's a toxic, secret shame that infects their interactions with family, medical staff and even their babies," Steinberg says. "The group seems to at least partly alleviate this, as it fosters a network among parents with this common experience."
Steinberg and Kraemer also find that many families rely on them to figure out how to "navigate the system" on the unit. Because they have their own relationships with the nurses and physicians, the two psychologists can often provide suggestions to parents about the best time to ask a nurse if they can hold their baby and how to ask a neonatologist about their baby's medical condition.
Since Leo faced an extended NICU stay, his parents were invited to seek out a group of nurses who would be assigned to care for him every shift. Asher went to Steinberg for help in determining how to select her son's primary nursing team.
"I mean, this is Columbia [University] — all of these nurses are, technically speaking, the top nurses in their field, but she reminded me that they have to be a good match for my family," Asher says. "She told me, ‘This is the person you're going to call when you wake up in the middle of the night and first thing in the morning. They're going to be standing here for you in the hour you're away from the NICU.' That really helped put things in perspective for me during that decision."
Kraemer and Steinberg also help the care team better understand parents' emotions and mindsets, says Helen Towers, MD, professor of pediatrics at Columbia University and a neonatologist on the unit. For example, the physicians on the unit rotate services every three weeks, so they might not be providing care throughout an infant's entire NICU stay.
"All too often, the details of parents' lives and complications of home relationships that may well have a bearing on their parenting skills are not sought out by the physicians but by the psychologists," Towers says. "They can share these findings and allow us to chart more individualized courses for infants and families."
Central to this effort, Kraemer and Steinberg say, is working to translate the traumatized psychological minds of parents — both from a family's history of previous miscarriages or stillbirths in addition to the most recent traumatic birth experience and uncertain future for their newborn — to the medical and nursing staff, as well as the unit's social workers.
"Understanding that the traumatized and frightened mind processes information and experience in very particular ways goes a long way toward fostering more successful interactions between parents and staff who are otherwise mystified, frustrated or even angered by heated encounters with parents," Kraemer says.
In these situations, the two psychologists work to explain to the staff how people cope under stress, clarifying that what looks like unreasonable anger is in this instance a substitute for unbridled anxiety. They also try to help the staff member understand why information might need to be repeated again and again."They're able to convey that it's not about me — that the mother or father may be acting out in response to the fact that they're where they don't want to be and I just happen to be there when they let it loose," says Fran McCarthy, a NICU nurse who has worked with Steinberg and Kraemer since they started on the unit.
The nurses and physicians also rely on the psychologists to help families through complicated decision making, particularly when a family is faced with choosing whether to continue medical interventions for a baby whose odds of surviving and thriving are bleak. In addition, even when Steinberg or Kraemer are not able to be present for end-of-life discussions with families, the NICU staff relies on their experience to help families cope and come to a consensus, McCarthy says.
"When comfort care comes up, they often provide me with ideas on how to approach the family and share information about what things they have heard about the family's history, so that the family feels heard and understood," she says.
They also help the staff, who have often spent many hours caring for a baby, through their own emotions about the child's death.
"This is essential because we believe that our role in ‘holding' the staff, by paying attention to their emotional lives and reflecting on them within ourselves and with them, enables the staff in turn, who are in the trenches, to ‘hold' the parents," Kraemer says.
It's this "quiet presence" in the NICU — the time they spend learning about the lives of staff members over the years, their adeptness at picking up stressors in nurses and physicians, and their insight into how to avoid these stressors — that Towers says she finds helpful.
"I might have once been one of the physicians who did not feel a psychologist was necessary in the NICU and that it would lead to more misinformation, but with the successful integration of two senior, incredibly well trained and practiced therapists, I am convinced that they are adding enormously and qualitatively to the successful outcomes of our families," Towers says. "Their presence in our NICU is now invaluable."
Amy Novotney is a writer in Chicago.
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