Parents who have a baby in the neonatal intensive care unit (NICU) are under a lot of stress. They're not only worried about the health and well-being of their newborn, they're also navigating the physical and emotional difficulties of hospital life: lost sleep, financial worries, transportation logistics, and the balance between work and other family responsibilities.
And while doctors and nurses are monitoring their child 24/7, all too often there's no one watching out for mom and dad. If you have a friend, relative, or coworker who's going through this difficult time, there are things you can do to help.
Of course, every parent's situation is different, and everyone will react differently to well-meaning words or actions. But here are some basic do's and don'ts straight from the experts and parents who have been there.
Do real favors. "What I found the most helpful was that my mother-in-law took care of us as opposed to taking care of the baby," says Elisette Carlson, whose son Andrew was born three weeks premature, spent 11 days in the NICU, and then required close monitoring at home. "She knew what food we liked, she bought us groceries, she cleaned our house. It made it that much easier to focus my attention on my son, where it needed to be."
Don't wait to be asked. Psychotherapist Sarah Best, LCSW, agrees that the best thing friends and family can do is offer very practical support – without being asked. "Don't just say, 'Let me know if there's anything I can do,'" she says. "When you're in the midst of a health crisis, you often don't have the energy to ask for help, or you think you can do it all yourself." Instead, offer a few ways concrete ways to help (organizing a carpool, doing a load of laundry, taking care of a pet) and then ask what would be the most helpful.
Do listen and offer a shoulder to cry on. Let your loved one know you're there for them if they need to talk, and that you're willing to listen to anything and everything they're thinking. "Parents need to know that whatever emotions they're feeling are normal, and that they're not going to be judged for them," says Kelli Kelley, founder of the nonprofit Hand to Hold and mother of two NICU graduates.
Don't trivialize their situation. You may think that bringing up stories of other families who had a worse experience might help a parent feel better, but it can have the opposite effect. "The very worst thing anyone can do is minimize the intensity of what someone is experiencing," says Best. "Saying things like, 'Just be grateful he's alive,' or 'I know someone whose baby was born even earlier,' may be said with the best intentions, but ultimately it says, 'I'm not taking your experience seriously.'"
Do call and visit. Spending so much time in the hospital can be lonely and exhausting, says Amber Matyi, whose son Luca was delivered four weeks early and spent 24 days in the NICU. She wishes she had asked loved ones to come and sit with the baby so she could get some rest or take a break. "I felt like I needed to be the person who did everything, and I didn't want Luca to ever be alone," she says. "But I didn't realize until my body couldn't take it anymore that it didn't necessarily have to be me – that other people can take a turn too so I could take care of myself for a little bit."
Don't stop after the first few weeks. When newborns are sent to the NICU, it can be weeks or even months before they're healthy enough to leave. "Families get a lot of concern when their babies are first born, but by week three or week six, that initial frenzy has died down," says Best. "They're still driving to and from the hospital while everyone else has moved on with their lives." She encourages friends and family to check in throughout the entire NICU process. Your help will be appreciated just as much (or more) down the road.
Do follow up once they're home. Even when NICU babies come home, they may still have weakened immune systems, many doctor's appointments, and other health challenges that require special care. Plus, mom and dad may still be dealing with serious emotional strain. "I've worked with countless women whose friends say, 'The baby's home; time to put it behind you and move on,'" says Best. "But often, mom is still feeling stressed and helpless, like something bad could happen at any minute. It's not something you just get over right away."
Don't neglect their emotional health. Mothers of NICU babies are at a higher risk for mood and anxiety disorders, such as postpartum depression and post-traumatic stress disorder. Friends and family can help recognize symptoms and may be able to persuade a mom to see a mental health professional. "Things like irritable mood, angry outbursts, feeling really on edge all the time – these things suggest a pretty significant trauma response," says Best. Other red flags: Parents who are hypervigilant and overprotective, who have intrusive flashbacks or nightmares about their time in the NICU, or who avoid situations that might trigger memories (like doctor's appointments or driving past the hospital).
Do research for them. Even if your BFF normally tells you everything, she may not be comfortable sharing the details of her NICU experience. "Parents of preemies have a hard time using their friends and family as resources because they don't particularly want to talk about the possibility that their baby might die – it's too scary," says Diane Holditch-Davis, PhD, RN, the Marcus Hobbs Distinguished Professor of Nursing at Duke University School of Nursing. "Sometimes talking to someone who's been through a similar situation is easier." You can start by finding out whether the hospital hosts support groups or has a social worker your friend can meet with or recommending an online resource like Hand to Hold, where she can connect with other parents who have been in her shoes.
Don't forget the rest of the family. Fathers and siblings can also suffer when a baby is in the NICU, and they often don't get as much attention as mothers do. Kelley says her husband had a lot of his own emotional issues to deal with during and after their son's hospital stay, and Matyi says her older daughter took Luca's hospitalization particularly hard. Kelley also points out that it's common for couples to have marital problems when a child is sick as a result of frustration, guilt, fear, and communication problems. "It's important that we not overlook these risk factors for the entire family," she says, "and help them through this difficult time together."