When Amanda Sloane went home from the hospital two days after delivery, she left her newborn daughter, Emerie, in the neonatal intensive care unit (NICU). As Sloane was wheeled out the front doors empty handed, she passed wheelchair after wheelchair of women leaving with their newborn babies. And every time she returned to visit, she passed a new line-up of mums.
“It almost felt like a walk of shame,” says Sloane, whose daughter was born full-term with Pierre Robin syndrome, a group of facial abnormalities that can impede eating and breathing.
“It felt like I was going to the library every day and checking out my baby for a few hours, and then I had to give her back. I had to ask permission to touch her or change her diaper. I was not in charge, and that’s so weird when you’re the mum.”
For parents like Sloane, whose children are among the 15 per cent who spend time in the NICU or SCN (special care nursery) each year, the beginning of their child’s life is very different — and often far scarier — than they expected.
So it isn’t surprising research shows that NICU parents are at increased risk of developing anxiety, depression or PTSD. Or that even when parents don’t develop a mood disorder, they often experience symptoms of these conditions.
If your child is in the NICU right now, you don’t need an article to tell you that. What you need is support. Here is how to get it.
Connect with families who understand
“Being able to call or text with a parent who understands what you are going through is critical to processing your emotions,” says Kelli Kelley, whose two children were both born early and spent six weeks and 16 weeks in the NICU. She founded Hand to Hold, a US nationwide organisation that matches new parents in need of support with seasoned NICU parents. (For instance, if your child was born at 29 weeks, they will connect you with another parent who had a 29-weeker and has been trained in providing peer-to-peer emotional support.)
On your commute to and from the hospital, you can listen to the podcasts they’ve created specifically for NICU parents. There are also several Australian organisations that provide peer-to-peer support, such as Tiny Sparks WA. Bubhub has a list of support groups and helplines for carers of premature babies.
Connect with your baby
It is common for NICUs to practice kangaroo care, in which parents hold their babies skin to skin. Doing so has not only been shown to significantly improve the health and outcomes of NICU babies, but also benefits your mental health, according to Kelley.
If you are not able to hold your baby yet, Kelley recommends starting with asking to change your baby’s nappy. “For a lot of NICU parents, that’s the first real hug.”
Knowing that her daughter wouldn’t be able to come home for a while, Sloane printed out pictures of her and put them in frames by her bedside. “I could feel she was with us even though she’s wasn’t there,” she says. “I also kept a little hat of hers in my bag, so I felt like she was with me.”
When your child begins life in the NICU, you will miss out on some early milestones. “With my first, I lost four months of pregnancy and watching my baby grow,” Kelley says. “I lost the baby shower, the birth plan, my husband telling me to push, and the celebration of my family coming to meet the baby.”
She recommends reclaiming some of these meaningful experiences and maintaining a sense of normalcy by chronicling and treasuring little “firsts”, such as your baby’s first bath or bottle. There are baby books specifically geared toward NICU stays that can help you with this.
Make use of hospital support
There is a growing awareness of the emotional toll a NICU stay can take on parents and a movement to provide mental health support in the hospital. In 2015, the US National Perinatal Association released guidelines outlining the kind of support hospitals should make available to parents.
See if your hospital has a social worker who can help you manage both the emotions of this time and the financial and logistical challenges. Some hospitals also have staff psychologists or psychiatrists who can provide support or care if you need it.
If there are no other support services available (or even if there are), the nurses will inevitably play that role. “They hold your hands and they are the ones you are talking to for hours on end,” Sloane says. “If you open up to them, they are going to be a little bit like therapists, for sure.”
Ask for — and accept — help from your community
“This is a time when you call on your friends, your community, your coworkers,” Kelley says. People delivered meals to her, walked her dog, and even cleaned her house. For Sloane, having a mealtrain set-up was a godsend.
The fact is that human beings were not intended to raise people alone, and a NICU stay can teach you that lesson very early in your parenting life.
The circumstances surrounding death are always a surprise. Even when it isn't sudden, when it has been expected for weeks - months, even - there is always the shock of absence and loss, and the overwhelming feeling that comes with all of the details that need to be tended to while in the throes of grief.
All your friends and family are going to want to know the latest, but you have enough to handle without worrying about returning calls or texts. Instead, Kelley suggests designating a trusted individual to reach out to friends and family, post updates to social media, or maintain a blog with news about how you both are doing.
“The biggest piece of advice people gave me was to take time for myself,” Sloane says. “That’s a hard thing to do because you want to be there all the time, but you have to go home. You have to rest, and you have to heal — for yourself and for your child. You won’t be able to be fully there for him or her when you are depleted.”
Having another child at home forced her to leave the hospital, which she was grateful for. “When I hear about mums who stay at the NICU day and night I think that’s got to break you at some point,” she says. “When I got home, I just kind of unplugged. I didn’t call the nightshift. I just wanted to be home and try to focus on myself a little.”
When longer breaks aren’t possible, Kelley recommends just getting outside of the hospital: “Moderate exercise such as a brisk walk and fresh air rejuvenate you after hours sitting in the NICU, and then you are better able to care for your baby.”
It's understandable that pregnant women focus their planning on the impending delivery. Whether it's going to be a C-section or vaginal birth, at home or in a hospital, smooth jazz or screaming. You might even have made up a detailed 'birth plan', complete with instructions for pain meds; lighting preferences; and a plan for video, photos and cutting the cord.
Reach out for professional mental health support
When Emerie was three months old and the immediate crisis was past, anxiety hit Sloane hard. “I was in bad shape,” she says. “I couldn’t take care of my kids because I couldn’t handle the stress. I needed to talk to somebody.”
Therapy and anti-anxiety medication were tremendously helpful. “I now see therapy as this awesome form of self-care,” she adds. “It’s not something you do because you failed. To me, it’s just nice to have a person in your corner.”
If you find yourself experiencing any of these symptoms, you may be experiencing PTSD or a mood or anxiety disorder and will feel better with experienced professional mental health care.
“The NICU stays of my children were the most difficult times of my life,” Kelley says. “But I can now look back and see so many blessings. I encourage parents to journal, take lots of photos, and find ways to celebrate every milestone, and I also encourage them to seek support from friends, family, hospital staff and peer mentors. You are not alone. There’s an expansive NICU community of graduate families here to support you every step of the way.”