How to Stay Sane When Your Child Is in the ICU
When Amanda Sloan returned home from the hospital two days after giving birth, she left her newborn daughter, Emery, in the neonatal intensive care unit (NICU). As Sloane was wheeled through the front door empty-handed, she passed the wheelchairs of women leaving with their newborn babies. And every time she returned to visit, she had a new lineup of mothers.
“It was almost like a walk of shame,” says Sloan, whose daughter was born full-term with Pierre Robin’s syndrome , a group of facial abnormalities that can interfere with eating and breathing. “It seemed to me that every day I go to the library and check my baby for several hours, and then I had to return her. I had to ask permission to touch her or change her diaper. I wasn’t in charge, and it’s so weird when you’re a mom. ”
For parents like Sloane, whose children are among the 500,000 people who spend time in intensive care each year, their child’s start in life is very different – and often much scarier than they expected. Therefore, it should come as no surprise that research shows that parents of an intensive care unit are at increased risk of developing anxiety, depression, or PTSD. Or that even when parents do not develop mood disorders, they often experience symptoms of these conditions.
If your child is in intensive care right now, you don’t need an article about it. You need support. Here’s how to get it.
Connect with families who understand
“Being able to call or write to a parent who understands what you’re going through is critical to processing your emotions,” says Kelly Kelly, whose two children were born early and spent six and sixteen weeks in intensive care. She founded Hand to Hold , a nationwide organization that matches young parents in need of support and experienced parents in the ICU. (For example, if your baby was born at 29 weeks, they will connect you with another parent who was 29 weeks old and who has been trained to provide mutual emotional support.) On the way to and from the hospital, you can listen to podcasts they have created specifically for parents of the intensive care unit. The National Perinatal Association also has a comprehensive list of peer-to-peer support organizations.
Connect with your baby
Most ICUs practice kangaroo care where parents press their babies skin to skin. Not only does it significantly improve the health and outcomes of newborns in the intensive care unit, but it also benefits your mental health, Kelly says. If you can’t hold your baby yet, Kelly recommends asking him to change his diaper first. “For many ICU parents, this is their first real hug.”
Knowing that her daughter would not be able to return home for a while, Sloane printed out her photographs and framed them by the bed. “I felt like she was with us even though she wasn’t there,” she says. “I also had her little hat in my bag, so it seemed to me that she was with me.”
When your child starts life in the intensive care unit, you are missing out on some important milestones. “Because of my first child, I lost four months of pregnancy and watched my baby grow,” says Kelly. “I lost my baby shower, the birthing plan, my husband who told me to push, and the celebration of my family coming to welcome the baby.” She recommends bringing back some of these meaningful experiences and maintaining a sense of normalcy by writing down and appreciating little “novelties,” such as your baby’s first bath or bottle. There are children’s ICU books that can help you with this.
Benefit from hospital support
There is a growing awareness of the emotional implications of being in an intensive care unit for parents, and a movement for mental health care in the hospital is emerging. In 2015, the National Perinatal Association released guidelines outlining the types of supportive hospitals that should be available to parents. See if your hospital has a social worker who can help you deal with both the emotions of this time and financial and logistical problems. Some hospitals also have staff psychologists or psychiatrists who can provide you with support or assistance if you need it.
If there are no other support services available (or even if they are), nurses will inevitably play this role. “They hold your hands and you talk to them for hours on end,” says Sloane. “If you open up to them, they will probably be a bit like therapists.”
Ask – and accept – help from your community
“This is the time when you reach out to your friends, your community, your colleagues,” says Kelly. She was given food, walked the dog and even cleaned the house. For Sloane, setting up a lunch train was a godsend. The point is, humans are not meant to be alone, and being in an intensive care unit can teach you this lesson early in your parenting life.
All your friends and family will want the latest information, but you have enough information to get through without worrying about callbacks or text messages. Instead, Kelly suggests appointing a trusted person to chat with friends and family, post updates on social media, or blog with news of how you both are doing.
Take breaks
“The biggest piece of advice I’ve been given is to take time for yourself,” says Sloan. “It’s hard to do because you want to be there all the time, but you have to go home. You must rest and heal yourself and your child. You will not be able to fully support him or her when you are exhausted. “
Having another child at home forced her to leave the hospital, for which she was grateful. “When I hear about moms who stay in the ICU day and night, I think at some point that’s going to break you,” she says. “When I got home, I just went offline. I didn’t call the night shift. I just wanted to be at home and try to focus a little on myself. ” When longer breaks are not possible, Kelly recommends just getting out of the hospital: “Moderate exercise like a brisk walk and fresh air rejuvenates you after a few hours in the ICU so you can take better care of your baby.”
Seek professional mental health support
When Emery was three months old and the crisis was over, Sloane was seized with anxiety. “I was in bad shape,” she says. “I could not take care of my children because I could not cope with the stress. I needed to talk to someone. ” Therapy and medications for anxiety have been extremely helpful. “I now see therapy as a terrific form of self-help,” she adds. “It’s not what you do because you have failed. It’s just nice for me to have a person in my corner. “
If you find yourself experiencing any of these symptoms , you may be suffering from PTSD, mood disorder, or anxiety disorder and will feel better with experienced mental health professional.
“Staying in intensive care for my children was the hardest time of my life,” says Kelly. “But now I can look back and see so many blessings. I encourage parents to keep a journal, take lots of photos, and find ways to mark each milestone, and I encourage them to seek support from friends, family, healthcare staff, and mentors. You’re not alone. There is a large community of ICU alumni here to support you every step of the way. ”