When a baby is born full-term and healthy, it’s easy to know how to react and what to say. However, when there are complications or an unexpected outcome and a newborn is sent to the neonatal intensive care unit (NICU), it can be more difficult to understand what a parent is going through and how to support them.

Fortunately, most people never step inside a NICU. They never have to experience knowing that their child cannot come home with them right now.  They don’t have to face making difficult decisions or experience the any of the swirling emotions and physical exhaustion that come from having a baby in the NICU.

Here are some helpful tips from our clients and our doulas who have navigated the NICU.

  1. This is harder than they ever dreamed it would be.

Elliott was born premature with an unexpected medical diagnosis. By age two, Elliott has been in the hospital over 104 days and had experienced five surgeries. Staying upbeat and positive around their toddler Willa and family has been emotional challenging.  “Chad and I tried to be positive, but really, we were in tears most of the time,” his mother says.

  1. The NICU is a scary place. 

Seeing your loved one transported by ambulance or helicopter is hard enough, but seeing your baby hooked up to wires and monitors is an experience parents can have nightmares over. Yat that’s not the only hard part of having a child in the NICU. “There’s chaos going on all around you, with sick and sicker babies, and grieving families.  Doctors are always rushing and yet never seem to be there except when it is an emergency.” Says Elliott’s mom. “I would stay at his side and forgo eating and sleeping to watch over him.”

  1. They don’t know when we’re bringing the baby home.

One of the most common questions NICU parents get is when the child is coming home. Timelines are not definite and change all the time, especially with a sick child. Sometimes bringing home a fragile child is scarier than having them in the NICU.

  1. We may not ask for help, but we need it.

NICU stays can be days, weeks, and even months long.  Your ongoing support will be critical for the family long after the initial frenzy is over.  Don’t wait to be asked to help.  Both while the child is in the NICU and once they are home, the family will need more help that they realize.  Especially once home, there can be a loss of freedom, a lack of control, and even a sense of being housebound that becomes the new normal.  Don’t assume everything is perfect if you haven’t heard from them, instead reach out. Help in the form of food being dropped off, carpools, laundry, or having extra support at home with the house, chores, and other children can seem lifesaving.  Consider setting up a caring bridge site to help the family communicate and make requests for help.

  1. They may not want to talk about it or have the words.

“Going through a trauma like this is very isolating”, says Ari’s mom. “Even if you have friends and family members who support you, it’s a hard thing to talk about with someone who hasn’t been through it themselves. Once I had friends with NICU experiences, it was easier. We could compare notes.”

One third of all NICU parents eventually get diagnosed with depression or PTSD. Professional support can be pivotal. Finding a NICU support group or a mental health professional, like a psychologist or social worker, can help.

  1. Emotions may run wild.

Exhaustion, stress, anxiety, and even depression are common feelings for NICU parents. The emotions can change frequently.  Some new parents struggle to bond with their child/children, especially if they have a traumatic birth.  Maybe they are unable to touch, hold, or nurse them right away. It can lead to feeling helpless and hopeless.  One of the best things you can do is listen to them and offer them a shoulder to cry on.  Another is to avoid making their situation less than it is.  Even if they powered through the NICU stay, they may come home and let their emotions run wild.

  1. Things might never be the same.

Some NICU children return home with ongoing medical issues that require monitoring and special care. Ongoing medical appointments, therapy sessions, and unexpected daily adjustments, can change lives and careers. Elliott’s parents need to work to pay his medical bills.  However, when he was in daycare, he would get sick and go back to the NICU.  By having a nanny in the home, it reduces Elliott’s exposure and helps him to meet his milestones.  Other parents stay at home, instead of returning to work as planned. Others go to work part time or even change careers to reduce travel to be available for necessary appointments.

One thing in common from all the NICU parents share is this “We no longer sweat the small stuff. Instead we celebrate the small milestones.” I think that is a lesson we can all use even if we never visit a NICU or have to support a friend or  family in the NICU.

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