NICU Supporter Resources
If someone you love and care about is currently coping with a NICU experience
or has recently come home from the NICU, you're in the right place.
If you're a NICU parent seeking resources to provide to friends and family, you're in the right place.
It can be hard to know how best to support a friend, family member, colleague, or other community member when their child is hospitalized. We applaud you for seeking out resources and ways to educate yourself to be the best supporter you can be. We've compiled a list of resources* to help familiarize you with the NICU parent experience and perspective. These can be used to gain insight to be a compassionate, considerate supporter. We've also provided a list of ``dos and don'ts`` based on the collective experience of our NICU parent community.
*These resources are not meant to be exhaustive or to constitute medical advice of any kind.
Respecting Boundaries in the NICU and After Discharge
In the NICU, parents are trained to treat germs as the enemy to their baby’s health. Hospital to hospital expectations may be different, but it’s not uncommon for staff to require:
- Thorough hand-washing up to the forearms
- Removal of all jewelry including wedding bands
- Cleaning under fingernails with a brush or pick
- UV Sanitizing of pocket technology such as phones and digital cameras
- Removal of clothing that smells of smoke or fragrances
- Additional hand sanitizing upon entering the room, before touching baby, after touching their own face, before and after pumping, after eating, and after routine events such as use of the bathroom, and after coughing or sneezing
These policies exist because infants who receive care in the NICU are often born with immature immune systems and even the common cold can pose serious risks to their health and development. The threat is so substantial that a cold will often bar a parent or important visitor from the NICU entirely until they no longer show symptoms.
Your desire to support your NICU parent friends is well-intentioned and appreciated. It can be comforting to know folks are eager to welcome baby into the world. Thus it can be confusing and frustrating to be discouraged from visiting after discharge, or prevented from bringing children to meet the new baby. Worse, it can feel crummy if you’re asked to remove smoky clothing, not wear perfume, or repeatedly sanitize your hands.
Some parents are explicitly instructed by NICU staff or their Pediatrician to isolate their child from public places, limit visitors, and avoid all non-essential travel. The likelihood of isolation increases significantly if baby is discharged before, during, or even shortly after Cold/Flu/RSV season which is between the months of August and May depending on where you live and local, real-time, epidemiological data.
This informative video was produced by the Alliance for Patient Access, a division of the National Coalition for Infant Health. For more information specifically about RSV, visit the Little Lungs Campaign.
Showing Sensitivity to the Needs of NICU Families
As a NICU Family Supporter, it’s important to remember that restrictions on visits, clothing you wear, even gifts are not a reflection on your relationship with the parents. NICU moms and dads are eager to share their baby with you and the world at-large, and it can feel like a continuation of their emotionally challenging NICU experience to have to avoid visitors after discharge.
To avoid exacerbating their feelings of disappointment, we suggest the following ways to convey your understanding and respect of their needs:
- “We’re so glad you’ve come home and can’t wait to the baby. Please let us know when a visit would be welcome.”
- “Being home must be so different. If there’s anything we can bring you to help you adjust, we’re happy to leave it at the door and wait to visit in person when you’re ready.”
- “We understand adjusting to your new routine is probably overwhelming and you’ll need some time to get into a rhythm. If there’s anything you need us to know or do before visiting, just let us know.”
- “[So and so] has a runny nose so we’re glad to get a sitter so we can visit without her/him/them— Or we can all wait until it’s cleared up and visit then. We wouldn’t want to compromise baby’s health.”
Practicing patience and compassion during a NICU experience and in the transition from hospital to home is one key way in which you can support NICU parents.
Articles, Personal Essays, and Other Insights
8 Things I Wish I Knew Before My High-Risk Pregnancy This spot-on list featured on the Graham’s Foundation blog is full of reminders to help mom stay calm and confident as she goes through the ups and downs and of High-Risk pregnancy.
Understanding a High Risk Pregnancy The American Pregnancy Association has written an overview of High Risk Pregnancy in clear and comprehensive terms. Though it’s directed at expectant parents, there is an abundance of insight for others as well.
Scary Mommy’s 10 Tips to Get Through Your High-Risk Pregnancy Without Losing Your Sh*t Scary Mommy offers straightforward, honest, and refreshing insight into everyday issues facing moms. This list is helpful for expectant mothers as well as those that love them, and is delivered in realistic terms over-stressed, anxious moms need to cut through the chaos.
The Reality of the NICU from a Nurse’s Perspective is a great piece by Trish Ringley, RN, and founder of Every Tiny Thing. She provides a lot of insight into what to expect from experiencing the NICU in terms of emotions, sights, and sounds which can be a good primer before your first visit.
How Not to Say the Wrong Thing is a fabulous, easy to remember guide for practicing compassion and sensitivity in the face of trauma or hardship. It is a perfect tool for supporters of NICU families as well as any other crises someone in your life is facing. The basic principle is: comfort inward, complain outward.
To the Extended Families of Preemie Babies is truly applicable to anyone in a community supporting a NICU family.
Coming Home from the NICU: 10 Things to Tell Your Friends and Family We highly recommend you read this list before visiting a family who has come home from the NICU. It is written by the Family Support Navigator for Hand to Hold and is directed at NICU families. Knowing these important needs and showing sensitivity to them in advance relieves your NICU family of informing you, saving them time, emotional energy, and potential frustration.
Visitors and Visiting after Coming Home from the NICU is featured on the March of Dimes website. It has a few great reminders that about why visits may be limited once baby is home.
I See You is an open letter to NICU parents from NICU Nurse Jodi Dolezel. It offers first-hand insight into the daily struggles NICU parents face and the many numbered details of their days and hours. Jodi is the founder and facilitator of Peekaboo ICU.
Post Traumatic Stress and the NICU is written by Natalie Romero, whose son was born into the NICU. She explains in personal detail how PTSD impacted her and sheds some light on being a new mother of a term baby with serious health issues.
Our NICU Journey Changed Me Lana Lytwyn shares her personal growth and development as a parent after her daughter Isabelle was born a micro preemie.
Premature Birth and the Right to Grieve highlights the often underlying grief associated with a NICU stay and how the differences between parenting a NICU baby and a term baby can create friction with peers that is hard to manage.
Pumping in the NICU: Liquid Gold or Liquid Guilt is a personal essay by Andrea Mullenmeister about her struggle to feed her premature baby and how she learned to accept her body’s limitations.
Please Don’t Forget About My Child Who Died is an honest, raw, open letter to the community around a grieving parent. The author, Jessi Snapp is a wife and a mother to one child here and three she carries in her heart. She also founded Luminous Light Studio where she creates heartfelt art for bereaved parents in memory of their children.
What I Need is a brief, bullet-style essay written by a Loss Mom.
To The Grieving Parent is a touching open video letter to parents whose babies didn’t survive. Through its tender insight, it offers many helpful reminders for friends, family, and community members connected to grieving parents.
Basic Tips for Supporting Someone in the NICU
We all want to be helpful, but lack of relatable experience can make supporting a NICU family intimidating. The following suggestions are provided to better prepare you to support someone coping with an emotionally draining, physically demanding, and mentally exhausting rollercoaster ride, and ultimately to be a more compassionate, considerate, and sensitive supporter in their time of need.
Don’t take things personally:
NICU Parents are often trying to manage multiple processes at once. Being present with their newborn in the hospital while balancing the needs and demands of home life and/or work life is really hard. Many NICU parent’s describe themselves as being a shell of the person they once were and find themselves feeling strong emotions such as fear, anger, and sadness at all times. Stress and fatigue can often diminish their capacity to respond to friends and family in the way they would like to. In addition, they have been given the job of protecting a medically fragile baby, and cautioned of the dangers lurking in the world that could affect their baby’s ability to thrive. If a NICU parent asks someone to remove their jacket because it smells like cigarette smoke, or refuses a visit because of a runny nose or occasional cough, it is not a personal preference— they are following doctor’s orders and trying to do the best they can to protect their fragile newborn.
Instead: Honor requests with kindness and understanding, and know that these scared parents are following the instructions given by medical professionals.
Don’t wait to be asked for help:
It’s easy to feel at a loss for how to help when nothing about a NICU baby’s arrival is typical, and in the absence of obvious solutions, many people will do nothing out of fear or anxiety. A NICU parent’s brain is running a mile a minute and they need you to do some mental heavy lifting.
Instead: Offer up the services/tasks you feel comfortable taking on: babysitting siblings, ferrying family visitors to the hospital, meal preparation or delivery, laundry, watering plants, feeding pets— whatever you feel comfortable and capable of doing. Be creative: if you make killer scones, bring them to your friend on bedrest, if you sew, NICU sized-quilts are an amazing keepsake. Don’t hesitate to play to your strengths in offering support.
Don’t ignore cues:
Visits are often welcome and can be a breath of fresh air, bringing the deeply missed outside world into the NICU. However, it’s important to pay attention to physical and verbal cues that indicate a need for privacy, or that the visit has run its course because they’re often emotionally taxing. Friends and family wanting to be caught up on the day to day medical goings-on can be exhausting and sometimes re-traumatizing for parents. Only visit if you are completely healthy. Even if your nose is running from allergies, don’t risk it.
Instead: Keep your visits to a manageable length of time and offer to leave the bedside when doctors or specialists visit, or if emotions run high and a break is needed. If you can not visit do to health send cards, texts, or emails to remind the family they are on your mind and in your heart.
Don’t offer unsolicited advice:
It’s entirely reasonable to offer advice when you’ve been asked, but unless you have direct NICU experience, it’s better to assume the experience of raising a term baby is not relevant. There are countless ways in which the NICU experience differs from a typical pregnancy, childbirth, and first weeks or month of life. Offering advice or experience with a full-term baby can result in shame and hurt feelings for a NICU parent.
Instead: Listen patiently with kindness and sensitivity. It’s human nature to want to solve the problems of your deeply hurting loved one. Your role right now is to connect and offer a safe space where the parent can share their experience. Saying, “That sounds so scary or hard”, “I love you so much”, “I hear you, can I take on walking the dog/sending lactation tea or cookies/ bringing lunch (or other ways to help) for you?” acknowledges the parent’s experience without placing it in the context of your own.
Don’t “silver line” your comfort/consolation:
There may be positives about being in the NICU, but they won’t be apparent for most parents for many months or years. It isn’t appropriate to offer silver linings while a NICU parent is still in a grieving process (for the loss of their term pregnancy, a loss of a child, or a dramatic change in the expectations for their child’s prognosis). Offering these platitudes can offend, shame, or otherwise turn-off the person you seek to comfort.
Instead: Acknowledge the grief of a NICU parent and be willing to sit with them in that often uncomfortable, heavy emotional space while they process the experience. Offering words such as, “I’m so sorry,” “I love you so much,” “You are doing a great job,” are nice ways to respond. Asking if a parent would welcome a hug or other supportive touch such as hand holding is also a helpful response.
Do show up:
If you agree to deliver a meal, visit, or take on a household task, make sure you follow through. Reliability is extremely valuable to a NICU parent in an environment of little control. Every task a NICU parent can delegate or eliminate is one less task added to their cognitive load and relieves some stress or anxiety, allowing mom or dad to focus on baby.
Do offer a kind word:
Emails, cards, and other gestures of support are strongly encouraged. If you’re at a loss for what to write, inspirational quotes are a great starting point. In an age of texting and internet messaging, any heartfelt personal gesture will hit home with a NICU parent.
Do acknowledge the inherent hardship of their experience:
Having a baby in the NICU is hard, and it’s really refreshing to have friends and family honor that difficulty. It can feel counterintuitive to focus on the hardship faced by NICU parents for fear of dwelling on the negatives, but recognizing that this is a difficult experience no parent should have to face goes a long way.
Do trust NICU parents to know what is best for their baby:
A NICU stay often includes a great deal of training in the care of a NICU baby. Highly skilled doctors, nurses, and specialists have spent weeks or months coaching parents in the specific needs of their child. They have likely received detailed instructions around baby’s nutrition/feeding, expectations for sleep, appropriate soothing methods, and behaviors or toys to encourage and support healthy development. The lived or anecdotal experience of others may be entirely irrelevant, and it’s important to recognize that a NICU parent is an expert on their NICU baby. They will ask for insight and advice when it is welcome.
Do leave room to heal and be patient with the process:
It’s a misconception that once a family leaves the NICU life suddenly gets easier. A large percentage of parents leave the NICU with Anxiety, Depression, or Post Traumatic Stress Disorder (PTSD). The NICU is an experience that can impact a family for years beyond their hospital stay. Be patient with your NICU parent and avoid rushing them to heal as it can circumvent necessary steps that will offer them closure. Do listen patiently, compassionately, and with a willingness to learn about the complexities of their NICU experience. Allow your NICU parent to dictate their emotional needs. Help connect them to therapy or groups for NICU parents. Continue to be there for them, especially after discharge.