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.
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