It is well known that soldiers returning home from war 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 such as guilt or shame.
However, fewer people know that parents commonly experience similar symptoms after their babies spend time in the neonatal intensive care unit (NICU). Having a premature, birth-injured, or sick baby can lead to extreme anxiety for parents. Often, this feeling becomes associated with the NICU itself, rendering it a sort of warzone in which infants fight for their lives. In this blog, 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.
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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 an article for The New York Times. “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, 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, which occurs at a rate of 28-70% in NICU mothers, compared to approximately 16% of mothers in the general population. 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, despite evidence that a majority experience at least some symptoms. This is concerning because research shows that PTSD in NICU parents can emerge well after the baby is home.
Gender Differences and PTSD in NICU Parents
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. 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.”
Where Can NICU Parents Find Support? 
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.
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?”
A Support Group By NICU Parents, For NICU Parents
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 across 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.”
The nonprofit March of Dimes also provides connections to local support groups for every stage of pregnancy and postpartum, as well as a NICU family support program. They have an online support blog, too, aimed at parents whose babies are premature, ill, injured, 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 a very significant reality to those who experience it. There is growing evidence that NICU parents who participate in peer-support programs experience less anxiety, stress, and depression. 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 essential.
More research must be done on PTSD in NICU parents. Hospitals should work to implement programs to address the symptoms. Parents often focus on the care of their baby ahead of all else – often at the expense of their own mental health.
About ABC Law Centers: Birth Injury Lawyers
ABC Law Centers: Birth Injury Lawyers was established in 1997 to focus exclusively on birth injury cases. While some children with birth injuries make a complete recovery, others develop lifelong disabilities such as cerebral palsy, hypoxic-ischemic encephalopathy (HIE) and seizure disorders like epilepsy.
If your child’s birth injury and subsequent disability could have been prevented with proper care – this is medical malpractice. Settlements from birth injury cases can cover the costs of lifelong therapy treatments, extensive medical care, and other crucial resources like accessible housing upgrades.
If you believe that your child’s birth injury was caused by medical negligence, contact us today. We are available 24/7 to talk to you free of any obligation or charge. In fact, our clients pay nothing throughout the entire legal process unless we win.
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Our attorneys have worked with parents like you for 25+ years and we are dedicated to helping your family secure your disabled child’s financial future.
Related Reading
- 10 Coping Tips for Parents in the NICU
- Why do some babies go to the NICU?
- The NICU: Understanding the NICU Equipment and Environment
