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‘Every 30 seconds another alarm is going off’: Neonatal ICUs can take their toll on parents

Kayleigh Lentz and her son. After a routine pregnancy, Lentz was told that her baby had a congenital abnormality requiring surgery. “I was scared every day in the hospital that he was going to die,” she says.
Kayleigh Lentz and her son. After a routine pregnancy, Lentz was told that her baby had a congenital abnormality requiring surgery. “I was scared every day in the hospital that he was going to die,” she says. (Family Photo)

For the casual visitor, the most striking thing about a hospital’s neonatal intensive care unit is the noise. An orchestra of alarms beeps incessantly. The lights are dim, the shades are drawn and the air inside the NICU’s sterile environment is thick with parental anxiety.

When babies are born prematurely or sick, they are separated from parents, hooked up to tubes and wires, and cared for in transparent incubators. To understand what is happening to their children, family members must learn a strange new medical vernacular while they await discharge. It is frequently an emotionally exhausting roller-coaster ride and it can have a lasting toll on the families.

“Miracles happen there, and the worst things in the world happen there. And it can go from one of those to the other in a matter of hours,” New York mother Kayleigh Lentz says. After a routine pregnancy and delivery in June 2018, Lentz was shocked to learn that her son had a congenital abnormality that required the removal of his small intestine.

“I was scared every day in the hospital that he was going to die. I was scared to bond with him,” she says.

Parents of newborns who have been hospitalized tend to have higher rates of depression, anxiety and acute or post-traumatic stress disorders. Some studies of parents of preterm babies report postpartum depression rates as high as 40 percent, well above the 10 to 15 percent reported for women generally after childbirth.

In June 2016, Maryland parents Robert Pergament and Emily Turek found themselves in the NICU after Turek’s appendix ruptured, necessitating an emergency Caesarean delivery some 10 weeks before her due date, when she was 30 weeks pregnant. Her recovery was complicated by life-threatening sepsis due to infection from her ruptured appendix, which led to being separated from her newborn for 11 days. When mother and daughter were finally reunited, Turek had difficulties forming an attachment. “I didn’t feel like I was needed at all.” she says. “When the baby is in the NICU, they don’t rely on you. The nurses were there to keep her alive.”

New father Pergament also found the experience extremely stressful. “Every 30 seconds another alarm is going off. The nurses may grab your baby from you to get her to start breathing,” he says. “It’s just relentless.”

Turek and Pergament’s daughter spent nine weeks in the NICU. After discharge, Turek continued to struggle to bond with her baby and Pergament began to experience anxiety symptoms. Initially, the couple tried to hide their feelings from each other. “He didn’t want to tell me about his anxiety,” Turek says. “And there was so much I couldn’t share with him because I already felt guilty enough that I didn’t have the feelings I was supposed to have.”

For Chrissy Macken, worsening preeclampsia which caused her blood pressure to skyrocket, forced an emergency delivery 2 1 /2 months before her due date. Her premature daughter struggled with a previously undiagnosed heart defect and chronic lung disease.

In the first few weeks after the May 2016 birth, Macken found herself overcome with uncharacteristic rage that left her screaming at strangers. She also experienced dangerous delusions.

“During our NICU stay, I spent an entire day absolutely convinced that the nurses had switched my baby with someone else’s,” Macken recalled. “I couldn’t even bring myself to hold my daughter because no part of me thought she was mine.”

At a routine therapy appointment, her psychiatrist quickly diagnosed and effectively treated her for postpartum psychosis, a dangerous illness that occurs in 1 to 2 of 1,000 deliveries.

“Parents who have any mental health issues, whether they be depression, anxiety or stress may have difficulty interacting with their baby, not only in the NICU but also after discharge. And the way parents interact during infancy often determines how the baby will do long term,” says Karel O’Brien, a neonatologist at Mount Sinai Hospital in Toronto, and an associate professor of pediatrics at the University of Toronto faculty of medicine.

In addition to the stressors of the NICU and challenges of caring for a medically fragile child at home, parents often experience financial pressures, marital strain and social isolation, all of which can exacerbate mental health issues. A parent’s psychological distress, if unaddressed, may negatively influence a child’s development until their teen years, according to a 2014 series in the Lancet. In extreme cases, parents’ untreated mental health problems may be associated with child abuse or neglect.

The disruption in the attachment process can add to the psychological distress of parents, according to Susan Niermeyer, a neonatologist at Children’s Hospital of Colorado and a professor at the University of Colorado. “Attachment is fundamental to survival. To really thrive, babies need the interaction of a consistent caregiver. It’s important not only for a child’s neurodevelopment but also for the emotional health of the whole family,” Niermeyer says.

“If bonding is disrupted, it doesn’t mean parents and babies will never build attachment relationships. It just means that extra work may be required,” says Linda Franck, a professor at the University of California at San Francisco and co-principal investigator of the UCSF California Preterm Birth Initiative, a research project that aims to improve maternal and newborn health outcomes and reduce racial barriers in preterm birth.

“Over time, with close contact and guidance from the health-care team, parents can reestablish a strong emotional connection with their baby,” she says.

One well-studied avenue to aid in attachment is through promoting more physical closeness between parents and newborns.

“There is magic in that touch right at birth,” Niermeyer says. “That contact correlates with much greater attachment and lower depression.” She advocates that perinatal clinicians find creative ways to physically connect newborns with their parents immediately after birth, even after emergency deliveries.

Practicing kangaroo mother care in the NICU did not foster Turek’s attachment to her infant. But several months after discharge, with effort and outside mental health treatment, she was able to bond with her daughter, who is now 2 1 /2 years old. But she says she is feeling guilty that the attachment process was not as immediate as it was with her second child, born full-term.

Strong evidence shows that engaging parents in the caregiving process during hospitalization can also improve family well-being. In a recently published study, O’Brien and her collaborators found that involving parents by encouraging them to participate in medical rounds involving their child and performing routine tasks, such as bathing and changing diapers, led to improvements in newborn weight gain, higher breast-feeding rates, and lower parental stress and anxiety.

It can be difficult, however, for many parents to spend significant time in the hospital because of work demands and limited parental leave, the need to care for siblings, or transportation problems.

“Our whole societal and family structure in the United States poses challenges to letting families really engage with their babies, who may be hospitalized for a long time. It’s difficult for people to spend six or eight hours a day with their child,” Niermeyer says.

Peer support programs for parents of preterm babies can boost parents’ moods and facilitate a safer home environment by improving their sensitivity to their child’s needs and confidence in caring for a tiny and often medically fragile baby. Interacting with others who are going through the same struggles can curb some of the social isolation parents feel, as well.

In some cases, a parent’s psychological stresses may persist, or even show up, after discharge. “I didn’t start experiencing the physical symptoms of anxiety until a year or more after she was born,” Pergament says. Timely diagnosis and treatment helped curb his anxiety, but he says he still struggles with the urge to be an overprotective father.

In Lentz’s case, her son was discharged from the hospital two months after his birth requiring complex ongoing care. Eight months later, “we’re still reeling with the reality of having a child with a chronic medical condition,” Lentz says. “I am definitely struggling with post-traumatic stress and anxiety issues. My son was readmitted to the hospital last October for several weeks, and it took a really big toll on me.”

Given that parent mental health is so important to a child’s long-term outcomes, many experts say parents of NICU babies should be routinely offered mental-health screening and help.

“Every hospital feels like it has family-centered care,” says Kelli Kelley, chief executive of Hand to Hold, a nonprofit group that provides peer support and online resources to NICU parents throughout the country. “Yet when it comes time to invest in a program, all of a sudden there is no budget.”

For now, however, the onus tends to be on parents to seek the help they need outside of the hospital.

“The whole mental-health conversation is something I found lacking,” says Macken about her NICU experience. She continues to receive treatment for PTSD related to her daughter’s hospitalization.

“It was quite striking to me that my husband and I were going through a really traumatic event and no one had anything to say to us about our mental health,” she says.

Amialya Durairaj lives in San Diego with her husband and twin daughters, who were born three months early.

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