Having a baby in the NICU is probably one of the most stressful events any family can experience. There may be emotional, psychological, physical and practical challenges that can be associated with an admission to the NICU. Everyone's experience of the NICU is different.
An unexpected admission to the NICU with a newborn baby can be an extremely stressful experience. The world outside the NICU does not stop when a baby is admitted. This can cause additional stress. Financial issues, competing childcare demands, work commitments and distance from the hospital are just some of the additional stressors some families may face. The health-care team is there to help. Speaking with NICU team members about what is adding to your stress may be helpful. There may be resources and programs available to better support you and your family.
Typical emotional reactions
First impressions
Most families find themselves in the NICU unexpectedly. Typically, there is no time to prepare for the admission. Often, babies are admitted to the NICU shortly after birth, thereby creating distance between the birthing parent and the baby. This presents additional stress for the family; therefore, connecting parents to their babies is a major focus for the team in the NICU. The NICU team is tasked with ensuring parents and caregivers are educated about the environment and the sights, sounds and technologies.
Initial reactions
All and any emotions a parent, caregiver or family may feel about an NICU admission are valid. Some days, parents and caregivers may feel a range of emotions, including shock, grief, happiness, worry, relief and fear—just to name a few. Navigating uncertainty is a huge part of the NICU admission for families.
Will my baby be all right? Will my partner be OK? What is going to happen next? These uncertainties are stressful and often provoke strong emotional reactions in individuals, among family members and between parents and the staff at the NICU.
Fluctuating emotions
There is no one overriding reaction that parents have in the NICU. In fact, if there is one common emotional theme applicable to all parents, it is that emotional reactions change, often rapidly. Parents often describe it as an emotional roller coaster. One minute they are angry, the next stoic, grateful, relieved, and then potentially sad, worried or feeling guilty. This is normal. Given the circumstances, which at times can change daily as the baby’s condition improves or suffers a setback, parents should expect that they will have a wide variety of emotional reactions. It will come as no surprise that we have often found that parents and caregivers are highly impacted by the conditions or progress of their babies. For the most part, when baby is doing well, parents are doing well.
Even with the prospect of a happy and healthy outcome, parents often feel a sense of loss or grief during the first days in the NICU. Though the baby might be doing fine, parents must come to terms with the fact that however they imagined the birth and the arrival of a new baby, something else entirely has happened. Family and friends often do not know how to react either, which reinforces parents’ sense of loss and potentially isolation. For example, it may be many weeks before someone says “congratulations” even though you have just had a baby.
It should also be said that there are times when the baby’s progress or condition does not impact a caregiver’s mood. There will be good days and bad days, and these may not have anything to do with how well your baby is doing at any particular moment. For example, a parent may have a bad day on a day that their baby is having a good day. It may be that when baby is ultimately stable or doing OK, you as their parent or caregiver are finally able to move through the many emotions you have been experiencing.
Suppressing emotional expression
Expressing emotion can be very difficult for people to do. Depending on your personal experience with showing emotion, your unique personality, background and culture, you may be reluctant to share your feelings about the NICU admission. That’s OK! Some parents like to keep their feelings more private while others are more open to speaking with the team about how they are doing. The NICU team respects and acknowledges that everyone copes differently.
Guilt
Many parents may feel a sense of guilt; they imagine that they have done something to create this situation. The reality is that parents have little control over the events that led them to the NICU.
Sometimes, parents are reluctant to bond with their baby in the NICU; they fear getting close to their child who is very ill. With the intense emotions and dashed expectations, the thought of bonding emotionally with their child can be scary for parents, especially at first. It is OK to be honest about these feelings with the NICU team—they can help provide encouragement and support as you move through these emotions.
Forgive yourself; forgive others
In stressful situations, like the experiences of families in the NICU, it is important to forgive. Practising forgiveness and giving oneself permission and grace is of the utmost importance.
Communication
One of the most helpful things that people can do is to communicate their emotions as fully as possible to the people around them. Keeping emotions inside will not help to reduce stress or make the best out of what is admittedly a difficult situation. Strong, open and honest communication within the family, between partners and between the family and the health-care team is essential.
Practical needs
Depending on the expected length of stay, the distance to the hospital from the family’s home and other factors, parents should think about getting help for the following:
- taking care of other children and other dependent family members
- keeping up with the bills and other financial matters
- keeping up with the demands at work
- preparing for their baby’s eventual discharge and arrival home
- managing time between hospital stays and the rest of life’s ongoing responsibilities
While there may be various services available through the hospital to help parents with these issues, parents should think about who else can help. Even under the best and most normal circumstances of a healthy full-term birth, parents need help. Family, friends and neighbours are a good place to look to find what they cannot get from the hospital or government agencies.
Get in touch with friends and family and ask them to do specific things such as picking up the other children from school or bringing meals to the house. Remember, friends and family who visit new parents of healthy newborns at home often ask how they can help and do not come empty handed when they visit. Parents of babies in the NICU, who need more help than most, should not feel strange about asking for help either.
Helpful tips
Make a list
Making a list of all that you need in terms of practical help may be useful. Going after specific things from specific people and agencies may be less overwhelming. Also, as things get done and are ticked off the list, the stress level will likely drop.
Enlist the help of others
When people ask if there is anything they can do to help, say “yes” and give them something to do off your list.
Assign someone to be the conduit of information. Parents can often get frustrated or overwhelmed when friends and relatives are all phoning, asking how the baby is doing. Appoint one person to inform the rest and keep that one person informed.
Realize that some people are going to be more helpful than others at different times, and not necessarily the ones you expected.
Find balance
While parents and babies settle into life in the NICU, life goes on in the outside world and a balancing game begins: how much time can we afford to spend with our child? While parents are encouraged to spend as much time as they can with their baby, this should not be done by neglecting the rest of the family or their own mental health needs. Even though you naturally want to stay in the NICU as much as possible, you should get out at least occasionally to go for a walk, get some air and clear your head. Finding a balance between commitments in and outside the NICU can be difficult. Parents should speak with the staff and seek help when they need it.
These types of issues can be compounded when the NICU is far from the family home, perhaps even in another city. Parents find themselves torn, with one parent always at the NICU and the other running around trying to maintain an income and keeping the rest of the family going, all the time worrying about what is going on with their child and their partner.
Coping
In the NICU, the overriding concern for parents is their baby’s condition. As they become more familiar with the routines and setting of the NICU, parents often feel a desire to “do something” to help.
While much of what goes on in the NICU is out of their hands, parents can focus on several things. They can learn about their child’s condition, attend daily rounds and actively participate in their baby’s care. Health-care professionals can help in this regard as well. Having a better idea of what is going on can improve your peace of mind and reduce the sense of helplessness that parents often feel in the NICU.
At the same time, focusing entirely on the details and the numbers does not necessarily contribute to an improved understanding of what is going on. Some parents begin to pay attention to the incredible amount of detailed information that the various machines are giving and may become fixated with the numbers. Interpreting numbers is not as simple as it may seem. Indicators can fluctuate naturally from day to day or even minute to minute. Most of these fluctuations are not an indication that something has suddenly and dramatically improved or become worse. Parents should focus as much as possible on the longer view and soak up the positive aspects of what is going on as much as possible.
Additionally, parents should do what they can to make their baby as comfortable and welcome as possible. This can mean many things; parents can whisper to or gently touch their baby. At some point kangaroo care, which is a skin-to-skin holding of the baby, will be possible, as will breastfeeding.
Parents should also make efforts to remain connected with other members of the family.
Getting help
Health-care professionals know that parents are often overwhelmed by their experience in the NICU. For this reason, many hospitals have specific staff and programs available to help parents cope with both the practical problems and the emotional issues brought on by the intensity and complexity of the situation. It is highly recommended that you take advantage of whatever services are available.
Communication is key. Do your best to be open about what you are feeling. In the long run, no matter how long your stay and no matter what your baby’s outcome is, communicating with those around you is one of the best things you can do.