Kim Roscoe’s son, Jaxon, was born three months early, weighing two and a half pounds. But for nine days he did exceedingly well in the neonatal intensive care unit, and Ms. Roscoe felt little different from the other new mothers.
Her nightmare started on Day 10.
“I had left him late the night before, in my arms, tiny but perfect,” said Ms. Roscoe, now 30, of Monterey, Calif. But when she returned to the NICU the next day, Jaxon was in respiratory and kidney failure, and his body had swollen beyond recognition.
“He was hooked up to ventilators, his skin was turning black, the alarms kept dinging over and over,” Ms. Roscoe recalled.
Jaxon is 16 months old now, and home with his family. But he was in the NICU for 186 days, and his days and weeks were punctuated by near-death episodes.
During the six-month ordeal, Ms. Roscoe had constant nightmares. She slept with her shoes on, expecting a call from the hospital at any moment. She became angry at the world, and so jumpy she thought a supermarket scanner was one of Jaxon’s monitors going off. Her husband, Scott, immersed himself in projects, took care of their daughter, Logan, now 6, and held things together emotionally.
About three months after her son’s birth, Ms. Roscoe asked to see a psychiatrist. She was given a diagnosis of post-traumatic stress disorder, or P.T.S.D. — a mental illness more often associated with surviving war, car accidents and assaults, but now being recognized in parents of premature infants in prolonged intensive care.
A new study from Stanford University School of Medicine, published in the journal Psychosomatics, followed 18 such parents, both men and women. After four months, three had diagnoses of P.T.S.D. and seven were considered at high risk for the disorder.
In another study, researchers from Duke University interviewed parents six months after their baby’s due date and scored them on three post-traumatic stress symptoms: avoidance, hyperarousal, and flashbacks or nightmares. Of the 30 parents, 29 had two or three of the symptoms, and 16 had all three.
“The NICU was very much like a war zone, with the alarms, the noises, and death and sickness,” Ms. Roscoe said. “You don’t know who’s going to die and who will go home healthy.”
Experts say parents of NICU infants experience multiple traumas, beginning with the early delivery, which is often unexpected.
“The second trauma is seeing their own infant having traumatic medical procedures and life-threatening events, and also witnessing other infants going through similar experiences,” said the author of the Stanford study, Dr. Richard J. Shaw, an associate professor of child psychiatry at Stanford and the Lucile Packard Children’s Hospital.
“And third, they often are given serial bad news,” he continued. “The bad news keeps coming. It’s different from a car accident or an assault or rape, where you get a single trauma and it’s over and you have to deal with it. With a preemie, every time you see your baby the experience comes up again.”
Abby Schrader and her partner, Sharon Eble, delivered twins at 23 weeks. Both girls, born at 1 pound 5 ounces each, were having continuous near-death events. “We were constantly being asked whether we wanted to remove support,” said Ms. Schrader, of Philadelphia.
Eighteen days after the girls’ birth, the couple did withdraw support from one baby, whose health had badly deteriorated. The surviving twin, Hallie, now 3, was in the NICU for 121 days and continued to have medical problems once home. “From the moment of their birth, and still to this day, we feel like we’re triaging everything and just hanging on,” Ms. Schrader said.
The Stanford study found that although none of the fathers experienced acute stress symptoms while their child was in the NICU, they actually had higher rates of post-traumatic stress than the mothers when they were followed up later. “At four months, 33 percent of fathers and 9 percent of mothers had P.T.S.D.,” Dr. Shaw said.
It may be that cultural roles compel the men to keep a brave front during the trauma to support their partners, Dr. Shaw said, adding, “But three months later, when the mothers have recovered, that’s when the fathers are allowed to fall apart.”
The post-traumatic stress may take the form of nightmares or flashbacks. Sufferers may feel panic every time a beeper goes off in the intensive care unit, or they may avoid the trauma by not visiting the unit or by emotionally distancing themselves from their child. Over time, they may develop depression, anxiety, insomnia, numbness, anger and aggression. These symptoms, of course, can impair their abilities as parents.
Several studies have shown that the risk of P.T.S.D. was not related to how tiny or sick the child was or how long the stay in the NICU. “It had to do with the parents’ coping style,” Dr. Shaw said. “There were some who were more resilient and others more vulnerable.”
In one study of rural African-Americans, those who were at greater risk of post-traumatic stress reported more problems in their daily lives, like financial trouble or lack of a partner, said the study’s author, Diane Holditch-Davis, a professor at Duke University School of Nursing. One of the biggest problems for these parents is coping after they finally leave the NICU.
“It may be several months later when they’re ready to process what they experienced, but at that point, family and friends don’t want to talk about it anymore,” Dr. Holditch-Davis said.
Ms. Schrader, in Philadelphia, felt a similar isolation in dealing with her surviving daughter’s health problems. “We got the sense that people just didn’t want to hear about it anymore,” she said.
Experts say parents who are at risk for post-traumatic stress should be identified ahead of time and given help to prepare them for dealing with the initial trauma. But many hospitals are focused on saving the infants, not the emotional crises of the parents.
“Some hospitals have really great programs, and in some, it’s really very sad,” said Liza Cooper, director of the March of Dimes NICU Family Support program, which offers psychological support to parents in 74 hospitals nationwide. Even though most units have social workers, she went on, “there’s really no one there to support the parents, provide group activities or education.”
Vicki Forman did not realize that she was suffering from post-traumatic stress until about four years after the premature birth of her twins, when she began researching her book “This Lovely Life” (Mariner Books, 2009), about her experience in the NICU and raising her surviving son with multiple disabilities.
“What the parent is going through is more or less dismissed because what you’re contending with are the health issues of your child,” she said. “Occasionally a social worker will say, ‘Are you taking care of yourself?’ but never, ‘This is a traumatic experience you endured and you need to pay attention to these symptoms.’ ”
Some hospitals pair parents of premature babies in intensive care with those who have been through the experience. One study found that 16 weeks after childbirth, mothers who were matched with NICU veterans had less anxiety and depression, and felt they had more social support, than mothers in a control group.
In addition to the family support program, the March of Dimes runs an online support community called shareyourstory.org. “The most critical piece is to help prepare someone so they know what to expect and don’t fall into a world of frightening unknowns,” said Ms. Cooper, from the March of Dimes.
Untreated P.T.S.D. can have lingering effects on the child. During the NICU stay, for instance, traumatized parents may find it hard to hold or even look at their child, and that can profoundly affect the baby’s attachment to the mother. Later, mothers might experience “vulnerable child syndrome,” in which they become so anxious that a minor medical event sends them into a panic. Normal, everyday risks can seem life-threatening; children can learn to gain unhealthy attention from physical complaints.
In her book, Ms. Forman wrote: “From the moment my twins were born, I saw potential for tragedy wherever I turned. It would be years before I stopped thinking that way.”
In Monterey, Kim Roscoe is coping with a similar anxiety now, 16 months after Jaxon’s birth. “I still freak out if he has a runny nose,” she said. “And when he gets a fever, I’m back in the NICU.”