The first moments as a parent are ideally filled with wonder and joy. But for families whose babies are born prematurely or with health complications, those expectations are shattered as soon as their newborn is whisked away to the neonatal intensive care unit (NICU) and hooked up to tubes and wires.
Pretty soon these parents are having conversations with doctors and nurses they never expected to have, facing difficult decisions, and most likely feeling unsure about whether their new baby is going to be OK. Understandably, the stress and exhaustion of life in the NICU takes a very real toll on parents' mental health. Parents of children who have a stay in the NICU are at greater risk for anxiety, depression, and post-traumatic stress disorder (PTSD), for months or even years to come.
So whether you're a parent or a well-meaning friend or family member, recognizing that a baby's stay in the NICU can have a lasting impact is an important part of understanding the complex emotions surrounding birth and motherhood.
Coming to grips with the unexpected
Kelli Kelley's son Jackson was born by emergency c-section at just 24 weeks. When she first visited him in the NICU, she did not feel a bond with him. Instead she felt numb, confused, and sad. "There was so little I could even see of him," she remembers. "His face was covered by a respirator, and his little cap engulfed his whole head. There was none of that 'oh, he has your eyes,' or counting 10 fingers and 10 toes, all of those things that parents normally get to do."
It can be traumatic when the harsh reality of the NICU is so very different than the expectations parents had during pregnancy. Some research suggests that the severity of a mother's trauma isn't necessarily based on how tiny her baby is or how many tubes are hooked up to him – it's how much her experience differs from what she expected.
Then there are all the physical, logistical, and medical challenges of time in the NICU. When Amber Matyi’s third baby Luca ended up in the NICU for an extended stay, those stresses quickly piled up. Matyi lived 45 minutes from the hospital, which was too close to qualify for low-cost housing closer to the hospital, so she and her husband had to drive back and forth every day or spend the night propped up in a hospital chair. They also had to arrange care for their older children.
"The loneliness of being in the NICU all day and all night really got to me," Matyi says. "Your mind starts to wander, and being so tired amplifies the emotional side of things." She remembers feeling guilty about not being able to nurse him and that he needed to have blood drawn so frequently. "You tell yourself it's silly, and you know it's not your fault that he's in this situation, but at the same time it's very irrational. You can't help feeling that way."
"Experiences of helplessness during and following childbirth do seem to be related to the development of postpartum depression and other mood disorders," says Sarah Best, LCSW, a psychotherapist at the Seleni Institute. "If a new mom with a genetic predisposition to PPD has a baby in the NICU, and she has no control over his care – and she's also exhausted and pumping in a closet – those factors could certainly create a perfect storm that leads to a mood disorder."
The PTSD connection
Parents of NICU babies do have a higher risk for anxiety disorders, says Diane Holditch-Davis, PhD, RN, the Marcus Hobbs Distinguished Professor of Nursing at Duke University School of Nursing. In a 2015 study of 113 new mothers with babies in the NICU, she and her colleagues found that 42 percent of women had postpartum depressive symptoms, and 30 percent had symptoms of PTSD.
"There is nothing as upsetting to a parent as a life-threatening illness of a child," says Holditch-Davis, who has studied maternal mental health for more than 20 years. But for NICU parents, it's even more complicated. "From the mother's point of view, her body caused this to happen. She feels guilty she wasn't able to carry the baby to term, and she may have traumatic memories about the labor and birth itself."
For Kelley, certain sounds or smells can trigger memories from the NICU – and physical responses – even years later. "There are stores I won't shop in because the beep of their intercom is the same tone that was on my son's monitors," she says. "Just hearing it would give me shortness of breath. I'd basically have an anxiety attack right there."
Parents suffering from PTSD may even avoid doctor appointments out of fear that they might trigger memories, or they may feel constantly paranoid about their child's safety. If you experience any emotions that make it difficult to care for or bond with your baby, or that affect your own quality of life – at any point during or after your NICU stay – talk to your doctor or a mental health care professional.
Leaving the hospital
NICU parents face two difficult departures from the hospital – the first is discharge after delivery. For Kelley, leaving the hospital when her son had to stay behind was one of the hardest parts of those first few days. "No one talked to me about that intense emotion of walking out of the hospital without a baby," she says.
And then there is the day parents bring a baby home from the NICU. Although it's undeniably a victory, it doesn't always feel that way. And leaving behind the support of doctors and nurses can be scary, especially when babies have ongoing health issues that need to be monitored.
When Kelley brought her son home, she had to monitor his vitals around the clock. He also had a compromised immune system, meaning they couldn't leave the house for anything but doctor's appointments. "We were basically in lockdown for fear of infection," she says. "No taking him to the grocery store, no going out to eat with friends, no play dates. Our lives changed drastically. We went from being very social to very isolated."
In the months following her son's birth, Kelley knew she was stressed and depressed. After all, she thought, who wouldn't be in her situation? But she didn't realize how severe her symptoms were, or how long they persisted, until her second child was born two years later. Being back in the hospital triggered flashbacks and pent-up emotions about Jackson's birth and his time in the NICU – and finally convinced Kelley to get professional help.
Help for parents and loved ones
A combination of talk therapy and medication helped Kelley manage her emotions, and she eventually went on to found Hand to Hold, a nonprofit organization that provides resources, peer support, and recommendations for health care professionals to parents of preemies and special needs children. Hand to Hold pairs NICU parents with families who have gone through similar experiences and provides hands-on support (such as meals and educational programs) in NICUs around the country. The organization also hosts an online forum "Life After NICU."
Ask about similar resources in your area. Most hospitals have a social worker available to counsel families, and many also have support groups for current and graduate NICU parents.
Rely on friends and family who want to support you. When they ask how they can help, be specific. "Is there a relationship between your dirty laundry piling up and the development of PTSD? Maybe not a direct one," says Best, "but if your life outside of the hospital can be running as smoothly as possible and your stress level can stay down, that's going to be protective in some way."
Ask questions about your baby's care, and stay involved with his or her treatment, as well. Feeding your baby and practicing kangaroo care (holding him to your skin), is important for bonding and for your baby's development, and your doctors and nurses should work with you to have these opportunities as often as possible. In fact, a study presented at the 2015 American Academy of Pediatrics Annual Conference found that practicing skin-to-skin contact with their babies for at least an hour can help reduce mothers' stress levels in the NICU.
If you're the parent of a NICU baby, the best thing you can do is take care of yourself, says Best. "Make sure you're eating well, staying hydrated, and doing your best to get sleep," she says. "Keeping your body grounded and strong is the foundation for keeping you emotionally healthy." Read Five Steps for Surviving the NICU.
Looking toward the future
The medical community has come a long way in establishing a link between NICU stays and parental mental health problems. And although there are still no official guidelines for parents and clinicians to follow, hopefully that will soon change.
In 2014, the National Perinatal Association convened a group of physicians, nurses, psychologists, social workers, developmental specialists, and parents of NICU graduates to develop new guidelines for psychosocial support services for parents of NICU babies. These guidelines are expected to be published in January 2016, in a supplement issue of the Journal of Perinatology as well as on the website support4nicuparents.org.
In a recent keynote address to the National Association of Neonatal Nurses, Kelley outlined the areas of practice that these recommendations will cover – including the role of mental health professionals, peer-to-peer support programs, post-discharge support of parents, family-centered care, and developmental care as well as support to families during palliative care and after bereavement.
Kelley also encouraged NICU nurses to keep mothers and fathers involved in all aspects of their babies' care. "True family-centered care views parents as integral members of the care team – not just biologically related people who 'visit' their baby," she said. "You can help parents reframe their NICU journey from a time of anxiety and sadness to one of hope and transformation."