By Jim Jackson
The worst day in my life wasn’t the wintry morning when I stuck my tongue to a car door handle. It wasn’t the afternoon when I managed to pull defeat from the jaws of victory in order to lose a wrestling match that cost me a state championship. Nor was it the evening when I learned that I had failed yet another statistics class and that I was going to have to repeat it — although that was a very bad day. The worst day in my life was, ironically, also the best day — the day that my son entered the world like a rocket filled with jet fuel and introduced himself to us briefly before being whisked away to the neonatal intensive care unit.
Instead of what my wife and I had expected, our boy was purple and frail. We had entertained dreams of nuzzling our newborn (Michelle had talked excitedly about wanting to lay our son on her tummy). Instead, he was alone in an incubator. We were terrified, and although we worked hard to keep a collective “stiff upper lip,” the fear we felt was overwhelming. Having said this, I am relieved to report that our baby was never in mortal danger, and, compared to many of his brave little roommates, his problems were quite mild.
Our gradual awareness that our undersized boy would likely be fine was a great comfort, but the days ahead were still discouraging and long. Michelle and I have graduate degrees in psychology, a loving family and friends and an enduring faith, but we struggled and argued and cried (not necessarily in that order) during each of the 10 days our baby spent in the hospital and for several weeks thereafter.
Our story had a happy ending. The truth is . . . our ordeal is not really worthy of being compared to the gut wrenching tragedies that are all too common. Our baby sleeps in his own bed tonight, he is no worse for wear, and our only memento of his stay in the NICU is a quilt given to my wife by a lovely nurse.
On rare occasions we think of the events surrounding his birth and we breathe a sigh of relief. Many parents, of course, endure situations that are considerably grimmer, more lengthy, and much more traumatic.
“Having a critically ill infant is incredibly disruptive to the lives of parents,” says Charlene Howland, a nurse practicioner and certified nurse midwife.
“Parents are initially overwhelmed, and if their baby continues to have serious medical problems, the difficulties multiply. They frequently feel unable to bond with their babies and experience conflict related to the needs of their other children; they may find themselves in financial trouble.”
As a group, parents of children in the intensive care unit often experience depression and anxiety. They frequently have marital problems and interpersonal conflicts stemming from the stress they are under. In some cases, they even suffer from post-traumatic stress disorder. Put simply, these parents need help, and while there are no “quick fixes, there are more and less effective ways to cope with having a child in the neonatal intensive care unit.
1. Seek out Relationships
“If location, location, location is the key to buying real estate, relationship, relationship, relationship is the key to successfully coping with having a critically ill child,” says Mary Jo Peebles-Kleiger, a clinical psychologist and child specialist who has written extensively about the stresses associated with pediatric critical illness. According to Peebles-Kleiger, research has consistently shown that interpersonal relationships are related to positive outcomes and can help prevent the development of wide-ranging stress-related problems. Whether relationships occur within a marital, familial or church related context is of little consequence, as long as they are supportive.
2. Realize Limitations
The stress of having a child in the neonatal intensive care unit (NICU) or the pediatric intensive care unit (PICU) is difficult to overestimate. Parents who are consumed by fear and grief are likely to be less effective than usual in many life domains, and this is to be expected. Successful coping involves recognizing which tasks are and are not important, and placing a lower priority on those that are non-essential. Dominoes fall during difficult times — e.g. clothes don’t get washed, dishes don’t get cleaned, deadlines are missed — and this is OK.
3. Take Appropriate Control
When faced with a loss of control, one of the most natural tendencies is to try to seize as much control as possible. In its worst form, this urge can turn previously mild-mannered husbands and wives into authoritarian “control freaks.” In its best and most productive form, it can propel parents into taking an active role and bolster their sense of empowerment (as opposed to a sense of helplessness.) Concrete ways of taking appropriate control include such things as asking questions, doing research on the Internet or at the library, or seeking therapy or some other form of professional help.
4. Resist the Tendency to Blame
“Having a critically ill child frequently stirs up a lot of aggression,” reports Peebles-Kleiger. “This aggression is usually inappropriately channeled and shows up in subtle ways. It can leak out between spouses and takes the form of blaming.”
Anger is a normal reaction to having a critically ill child, but if it is not acknowledged, it can be expressed in subtle and passive-aggressive ways. By openly acknowledging feelings of anger, parents are less likely to act them out and to express them unproductively.
5. Recognize the Possibility of Ongoing Psychological Trauma
“Some parents tell me it’s never really over,” says Peebles-Kleiger, referring to the well-known pattern in which painful emotional issues re-emerge on anniversary dates, or with the onset of important developmental milestones.
When there are reminders of a particularly painful event — e.g. NICU hospitalization — feelings of anxiety or sadness that have been dormant for years are frequently provoked and are sometimes intense.
This is a normal process and not a sign of instability or mental illness. In those situations where strong emotions are provoked on anniversaries or other occasions, a talk with a counselor or family physician may be very helpful.
There are some things in life that are inherently painful, and having a critically ill child is one of these. Nothing can completely ease the fear parents feel when their baby is battling a serious problem.
No well-placed words can sooth the sorrow that grips a mother and father when their son or daughter is hovering between life and death. No doctor or counselor or minister can wave a magic wand and eliminate the trauma experienced by a couple who watch their first-born struggle for every breath.
As with most of life’s difficulties, there are no easy answers — but there are ways of coping that can transform bad situations into less difficult ones. Learning to rely on others, realizing limitations, trying to take appropriate control, resisting the tendency to blame and recognizing the possibility of ongoing difficulties will not turn an emotional marathon into “a walk in the park,” but they can offer hope and relief to tired, beleaguered parents.
Jim Jackson is a clinical psychologist at Vanderbilt Medical Center. He lives with his family in Nashville.