Emotional Responses to the NICU Experience

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Guest Blog by Sue Hall, M.D.

If you’ve had a baby in the Neonatal Intensive Care Unit (NICU), you know how emotionally draining the experience can be. And if you haven’t yourself, but know someone who has, understanding more about the emotions they might go through can help you support them.

A parent whose baby requires care in the NICU, either due to premature birth or some other condition, goes through a wide range of emotional ups and downs. A normal first reaction to being told your baby must be admitted to the NICU is fear: Will my baby make it? Will he be okay? Will she be normal after her NICU experience?  Sometimes these questions can’t be immediately answered by the doctors, forcing parents to go through an uncomfortable and sometimes very prolonged period of uncertainty.

For many parents, a second reaction is to grieve the parenting experience they had hoped for. Everyone hopes that their baby will be born close to their due date and will do well, spend time rooming in with them at the hospital, and go home when they do. NICU parents may have given birth weeks before they were ready to, only to have their babies taken away from them to go to the NICU. The NICU is a place where it’s usually hard for parents to feel like they are still the parent; understandably, they often feel they are losing control over their baby. This can interrupt parents bonding with the baby and leave them feeling helpless or even useless, wondering exactly what their role is.

If their baby’s NICU stay is prolonged, or if parents keep getting bad news from the baby’s medical team, parents may develop an acute stress syndrome. The constantly ringing monitor alarms, the experience of frightening apneic spells in which baby might turn blue and need resuscitation, and need for surgeries and other invasive procedures may all add up and overwhelm parents abilities to cope. One sign of acute stress syndrome is when parents begin to stay away from the NICU and even stop calling to check on their little one. Other signs are when parents find themselves flinching at all the monitor alarms, becoming irritable at seemingly everything, or alternatively not showing any emotional response when interacting with the medical team around their baby’s care. Some parents may simply shut down if they become so overwhelmed and frightened.

Not surprisingly, NICU mothers are at higher risk to develop post-partum depression than mothers who give birth to healthy babies, a risk that is ordinarily about 10-20%. In addition, a mother who has previously suffered from depression is somewhat more likely to develop post-partum depression. This may show up as excessive tiredness, poor appetite, sadness, inability to sleep, and rapid mood swings. Meanwhile, fathers are fighting their own battles. Expected by society to be the strong one, many fathers feel equally overwhelmed by the NICU experience and may feel especially upset that they can’t do anything to make it all better, which they often perceive to be their usual role in the family.

Even if parents do not experience acute stress syndrome, they are still at risk to develop post-traumatic stress syndrome, and according to recent studies, fathers may be especially likely to develop PTSD. If they’ve not been able to deal with their feelings during the baby’s NICU stay, these emotions and anxieties may surface later and take the form of nightmares, anger, irritability, depression or numbness.Parents with PTSD may find themselves overreacting to loud noises that remind them of monitor alarms, worrying excessively about even minor problems their infant may have, or falling apart or lashing out at the slightest reminder of their baby’s NICU stay.

Some other big issues that may weigh new parents down are the financial realities of having a baby in the NICU with high hospital bills looming on the horizon, the possibility of reduced income because of the need to miss work, and the costs of traveling to visit the baby and obtain meals at the hospital during visits.

NICU parents should proactively seek out resources to help them cope while their babies are in the NICU and beyond. A good place to start is with the NICU’s social worker. Parents should ask if the NICU has parent or family support groups or a program where current NICU parents are paired with former NICU parents in a peer support program. If needed, they should also inquire if financial help, such as gas vouchers and meal passes, is available.If parents don’t live in the city where the NICU is located, they should check to see if there is a Ronald McDonald House where they can stay at very low cost. Parents can look online to find support groups for NICU parents generally or for one dealing with their baby’s specific diagnosis, whether the baby is a preemie, has a birth defect, or some other problem. These groups abound on facebook and can also be found through google searches. Obstetricians or mother’s other primary care doctors can be good resources with whom to discuss possible need for medication if post-partum depression is severe.

Parents should also request a care conference with their baby’s doctors, to bring them up-to-date on the full range of tests their baby has already had, what is expected for the future, and an overall status report on their baby’s progress. The doctors should be able to guide parents to trusted information sources on the internet relevant to their baby’s condition, or parents can do their own research. The more information parents have, the better they will be able to understand what’s happening with their baby and to make informed decisions, should the need arise.

Another important way for parents to cope is to ask, early on, how they can become involved in their baby’s care. When can they take the baby’s temperature? Change his diaper? Give her a bath? Hold him? Feed her? Do kangaroo care (skin-to-skin contact)?  The more parents can regain their role as mom or dad, the better they will feel. Parents can also ask the nurses how to best interact with their baby, as far as touching the baby, understanding the baby’s cues, and talking to the baby. Babies who are premature or ill can be extremely sensitive to sound, light, and touch, and can be easily over-stimulated; the NICU nurses will be able to guide parents in finding what type of interaction is soothing to their baby.

Friends and family members can do a lot to help NICU parents get through their experience. They can offer to provide meals and transportation to new parents, run errands, babysit their other children so parents visit their NICU baby or even have time to themselves, and most of all, to simply be understanding listeners.

NICU parents need to talk, and this need doesn’t stop when the baby is discharged from the NICU. It may take parents a good bit of time to process everything that happened to them and their baby, and their anxieties may continue full force if the baby continues to have problems at the time of discharge. Parents may also be especially nervous around the time of the baby’s homecoming because they are leaving an environment where their baby has been monitored and attended every moment of the day, and now they themselves will be solely responsible for the baby’s care.They may be inclined to recreate the NICU environment with all of its structure, which may not lend itself well to a family experience. They may be stressed trying to integrate the new baby into their routine with the other children in the household, or stretched to the limit when they have to return to work.

Friends and family can be helpful by understanding what NICU parents are going through both during their baby’s NICU stay and sometimes for months afterward. Here is a link to an article that lists some ideas of what to say and what not to say to parents of preemies- http://commonhealth.wbur.org/2011/06/insensitive-remarks-preemies Most of all, those who are close to NICU parents need to understand that it’s not easy being a NICU parent, even if the baby ultimately comes home with a clean bill of health.

Dr. Hall is the author of For the Love of Babies:One Doctor’s Stories About Life in the Neonatal ICU. Her book is available on both www.amazon.com and www.barnesandnoble.com in both print and electronic versions.