This guest post by Jesse Reiter addresses an important part of the preterm birth experience – the trauma that parents of preemies face in the NICU and how that trauma can leave lasting scars that may not simply fade away with time. It was originally published here and is republished in full below with permission from the Jesse.
It is well known that returning soldiers often develop post-traumatic stress disorder (PTSD), a condition marked by flashbacks to a trauma, hyperalertness, avoidance of situations that trigger upsetting memories, and negative emotions like guilt and shame. However, fewer people know that parents commonly experience similar symptoms after their babies stay in the neonatal intensive care unit (NICU). Having a premature or sick baby can lead to extreme anxiety. Often, this feeling becomes associated with the NICU itself, rendering it a sort of warzone in which infants fight for their lives. Here, we’ll discuss the NICU environment and how parents may react to it, as well as what can be done to prevent/manage the symptoms of PTSD.
What Makes the NICU So Stressful?
“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…” wrote Laurie Tarkan in a 2009 article for The New York Times (1). “But when she returned to the NICU the next day, Jaxon was in respiratory and kidney failure, and his body had swollen beyond recognition.”
NICU parents often experience sudden shocks like this. However, the stress doesn’t only stem from a single event; in many cases it is a continuous stream of new worries. As Roscoe herself noted, “The NICU was very much like a war zone, with the alarms, the noises, the death and sickness. You don’t know who’s going to die and who will go home healthy.”
In a piece for The Mighty (2), Catriona Ogilvy expressed similar emotions:
“I remember the moment I first felt panicked and sick with PTSD symptoms; I was returning to the neonatal unit for my baby’s four-week follow up. Walking out of the car park and into the hospital I could feel my heart pounding in my chest and hear the beats and flow of blood throbbing in my head. I was dizzy as the sounds and feelings morphed into the beep, beep, beep of monitors and the hum of the ventilator as air filled my son’s lungs.”
Research on PTSD in NICU Parents
For years, NICU parents have described feelings of panic, uselessness, and even guilt. They are often screened for postpartum depression (3), which occurs at a rate of 28-70% in NICU mothers, compared to approximately 16% of mothers in the general population (4). More recently, people have begun to realize that the emotions experienced by NICU parents can also be indicative of PTSD. However, these parents are rarely screened for PTSD (3), despite evidence that a majority experience at least some symptoms (5). This is concerning because research shows that PTSD in NICU parents can emerge well after the baby is home. Delayed onset appears to be especially common in fathers. Shortly after birth, mothers are more likely to experience symptoms, but by four months, fathers are at higher risk (6).
Dr. Richard J. Shaw, an associate professor of child psychiatry at Stanford and the Lucile Packard Children’s Hospital, told The New York Times that this may be due to gender norms dictating that men will support their partners through trauma. “But three months later, when the mothers have recovered,” he said, “that’s when the fathers are allowed to fall apart” (1).
While parents’ emotional responses are perhaps easier to quantify, PTSD may also affect the infants (5). Tarkan noted that, “Untreated PTSD 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.” She goes on to explain that children may learn to seek attention from very minor physical complaints, knowing that their parents will respond dramatically to the slightest of problems.
Roscoe echoed this sentiment, admitting that 16 months after her son’s birth, “I still freak out if he has a runny nose” (1).
Support for NICU Parents
Kelli D. Kelley, the founder of a support group for NICU parents called Hand to Hold, recalls that when her son was born after only 24 weeks of pregnancy, she felt very isolated. The only source of support for parents that she could find was a group led by a chaplain; as she told The Atlantic, “Sitting with a man in a collar felt more like a memorial service.” Both of Kelley’s children were born prematurely and spent time in the NICU. Her son had to be attached to a heart monitor for months and required three surgeries in his first year of life; her daughter was born with a dangerous blood disorder. Kelley struggled with anxiety during and after the NICU stays, but was not diagnosed with PTSD until her firstborn was five years old (3).
She noted that acknowledging her PTSD symptoms “took some convincing in the beginning because I felt guilt for my emotions – as if I should be able to control them given my son lived. How could I be so sad and emotional knowing his successful outcome?” (7).
Kelley founded Hand to Hold because she saw a need for peer support among NICU parents. Today, it includes a network of up to 200 peer-support volunteers in the United States, England, South Africa, Canada, the Virgin Islands, Japan, and Puerto Rico. Beyond interviewing with the Hand to Hold team, these volunteers undergo background checks and receive training on care for people going through trauma and bereavement. NICU parents are placed with experienced volunteers based on their shared experiences and the similarities of their babies’ conditions.
Kelley told The Atlantic that, “I don’t ever want another NICU parent to feel alone like I felt” (3).
The nonprofit March of Dimes also runs a NICU family support program, offering psychological services to parents in 74 hospitals (1). They have an online support group, too, aimed at parents whose babies are premature, ill, or have birth defects.
Conclusion: The Present and Future of PTSD Care for NICU Families
Although the issue of PTSD in NICU parents is largely unknown to outsiders, it is still a very significant reality to those who experience it. Research has shed some light on the causes and effects of this disorder; there is also growing evidence that NICU parents who participate in peer-support programs experience less anxiety, stress, and depression (8, 9). Paid mental health professionals can also be very useful (10). Because PTSD can continue or even emerge for the first time after a baby has been discharged, continued psychological care for parents during the transition to home care is very important (6). More research should be done into PTSD in NICU parents, including treatment options, and hospitals should work to implement programs to address these symptoms. Parents may focus on the care of their babies at the cost of all else, which is of course understandable, but their own mental health is also important.
- The New York Times – For Parents on NICU, Trauma May Last
- The Mighty – We Need to Talk About PTSD in NICU Parents
- The Atlantic – The Trauma of Having a Newborn in the NICU
- J Multidiscip Healthc – Postpartum depression screening in the Neonatal Intensive Care Unit: program development, implementation, and lessons learned
- J Obstet Gynecol Neonatal Nurs – Posttraumatic stress symptoms in mothers of premature infants
- Psychosomatics – The relationship between acute stress disorder and posttraumatic stress disorder in the neonatal intensive care unit
- Hand to Hold – Understanding PTSD: When the Stress of the NICU Persists
- CMAJ: Effectiveness of a parent “buddy” program for mothers of very preterm infants in a neonatal intensive care unit
- J Perinatol – Recommendations for peer-to-peer support for NICU parents