PAPER PRESENTED AT THE ALEXIS FOUNDATION CONFERENCE IN CHICAGO, JULY, 1999
To start with I want to say that I am honored that I have been invited back to speak by Preemie-l and the Alexis Foundation. Thank you so much. I will begin this talk as I always do, by explaining why I am here. I am here because I am paying off a debt. Ever since my son was born prematurely and survived, I have felt that I have owed a debt-to doctors, nurses, my family, friends, other parents, and to God. I soon realized that the payment for my debt would consist of putting my psychological knowledge to use to help other parents adjust emotionally to the awful reality of having a high-risk baby. It is a debt I wish to be paying off my whole life; as you learn about me you will see that I have been paying on this debt for a long time.
My premature baby has now finished his first year of college. I am now 58% older than when my son, Chris, was born in 1980 at 30 weeks gestation, weighing 1,200 gm. We celebrated his 19th birthday 2 days ago. But I still get very emotional when I talk or write about his birth, and when I listen to the stories of other preemie parents. My training as a Clinical Psychologist was of almost no use to me or to my family as we struggled to cope with Chris' birth and his homecoming. I think of our struggle now as an emotional journey that high-risk parents must make from feeling completely incompetent to gaining some degree of confidence in our ability to be parents. I believe that family-centered Perinatal and Neonatal care must include a focus on helping high-risk parents cope emotionally along their unwanted journey.
Over the years I have come to the unfortunate conclusion that most hospitals that believe they are delivering family-centered care are only approximating it, and some hospitals miss by miles. And as a result, communication between professionals and parents suffers. (I realize that I am preaching to the choir here.) I suspect that there will not be a major improvement in communication unless there is a major overhaul in the system, an overhaul that will not work unless it comes from the top down. Unfortunately, the trend over recent years is poorer communication as Neonatal care grows.
Let me give you an example from one of the more family centered NICUs in Milwaukee, to be unnamed. This neonatology group had invited me to present at a one-day conference and I was invited out to eat with the big shots from the unit, the other speakers, and the drug reps. (who paid for it) the night before. I was sitting across the table from a well-respected neonatologist. He didn't know that I knew that he had been primarily responsible for the care of a boy, who was born prematurely to a woman I know. The boy was to be discharged soon. In our conversation, I thanked him for the care he had given to the X baby and the family, using the family's last name. In the moments of silence that followed, the look on his face told me that he did not recognize the name. It was not until I mentioned a very distinctive physical feature of the mother that he recognized whom I was talking about. He was somewhat embarrassed as he talked about one of the problems of Neonatology these days was that traveling from unit to unit, you couldn't get to know your patients.
Thankfully, that was a far cry from my experience with Chris. At least there were only 2 Neonatologists primarily responsible for care, a primary nurse, and a primary resident. Any we also knew whom to talk to when each of these primary providers had a day off. I know that many of you in this room have suffered from huge NICUs with multiple Neonatologists, fellows, residents, nurses, etc. From day to day, you don't know who your doctor is. I don't think that this will change without a major overhaul, an overhaul in philosophy and goals of treatment. I have a dream, one that I very much doubt will come true. The dream involves a change in perspective, one that perhaps some professionals may not like. One thing that would happen in the dream is that the term, "Neonatal Intensive Care Unit" would disappear. What used to be NICUs would become, "New Family Intensive Care Units". The goal of Neonatology would become a goal I once heard Sheri Nance describe. Rather than getting the baby home in the best possible shape, the goal of Neonatology would become getting the family home in the best possible shape.
Those of you that had the time or inclination of following the United States Women's soccer team through its winning the World Cup, will remember the midfielder, Michelle Akers. She is the one with the lion's mane of hair, running endlessly into exhaustion, repeatedly heading any threatening balls, defending her goal. I think of Michelle Akers as I would think of a high-risk parent, literally knocking herself out after banging her head countless times to ward off adversity. Never giving up, despite chronic fatigue. Soccer team physicians know the appropriate treatment after a game for Michelle Akers. Neonatology needs to recognize that parents are also in need of oxygen and emotional IVs in order to be able to continue the struggle. Becky Hatfield has told me of ways that her NICU at the U. of Utah could improve in communicating and supporting parents. But the U. of Utah is way in front of many other NICUs. They have hired Becky, a veteran premature parent, as a parent support specialist. Becky is the IV. I know that I don't need to convince anyone in this room that emotional IVs are crucial for parents to gain confidence in their abilities. We need to convince the rest.
Psychological distress in high-risk parents has been well documented in the literature (Affleck, Tennen, & Rowe, 1991; DeMier, Hynan, Harris, & Manniello, 1997; DeMier, Hynan, Hatfield, Varner, Harris, & Manniello, 1999; Nance, 1982; Quinnell & Hynan, 1999). This parental distress is also not limited to the time that our high-risk babies are in the NICU. My research has been conducted to identify risk factors for the development of Posttraumatic Stress Disorder (PTSD) in parents of high-risk infants. Other researchers have begun to identify a pattern linking perinatal risk to maternal distress, poorer developmental outcomes (Thompson et al., 1994), and disruptions in family functioning (Webster-Stratton, 1990). Part of communicating with high-risk parents involves empathy and an understanding of common feelings that preemie parents have. In the remainder of my talk, I hope to be able to put some substance and feelings into abstract words like denial and terror. I hope to express the feelings that many times we high-risk parents hold back; because we are afraid that people (and especially the medical staff) will think we are crazy and that we can't handle our crises.
The major point I try to make to high-risk parents and perinatal professionals is that the crazy, mixed-up feelings of high-risk parents are a natural and normal reaction to incredible stress. When I talk to groups of high-risk parents, I feel as though I am addressing a meeting of the veterans of the baby wars. High-risk parents feel crazy, and we want to return to normal quickly. But that is the worst thing we can try to do, because we can't stop or reverse the natural, healing process of our emotional reactions without doing damage to ourselves. The only things that are normal for high-risk parents are terror, grief, impotence, and anger (plus assorted other feelings like guilt, frustration, jealousy, and intense fatigue). And experiencing these lousy emotions is a sign that we parents are responding normally, not poorly.
So I ask you professionals to normalize our feelings for us. Let us know that you know that we are in the worst situation imaginable; and that what we feel is a natural reaction to a trauma, not insanity. And let us know that you will accompany us on our journey, that you are not afraid of our feelings. During the early stages of their baby's hospitalization, many high-risk parents are aware that they are dazed and confused. Many of us feel dumb and stupid the first few times we walk onto the NICU, although we don't want to admit it. That's why some of us tune into the technical aspects of our baby's care. It is a way of trying to get rid of the incompetence we feel. We are often aware that we have a mixture of awful feelings that won't let themselves be sorted out. Many high-risk parents also show what is known as denial. We seem to be unwilling to accept reality, and you need to explain things to us over and over. I believe that many times what is called denial in high-risk parents is actually a different process. Sometimes what is happening to high-risk parents is so horrible it must be blocked out. While you are listening to me now, I would like you to pause and remember what it was like for you during that time in your life that you were most afraid. You could have been in a severe automobile accident, watched a parent have a heart attack, been robbed at knifepoint, seen your child have a seizure, or something else. I suspect that you will remember that at such times it takes a supreme effort to just talk and breathe at the same time. If I am a high-risk parent walking into the NICU the first few times, it may take all of my concentration to just walk or even look around. And if you're a perinatal professional trying to explain something to me about apnea, oxygen saturation, or surfactant at the same time; the information just doesn't register, even if I'm nodding my head in agreement. Sometimes what we view as denial is more than denial, it is dissociation to a traumatic event.
I know of high-risk parents who have memory losses of many days while their child was in the NICU, and these memory losses are not drug related. I know of one mother who remembers nothing from her child's birth until he walked. If you consider the process as one of a normal dissociation to a terrible event, it may help you to look at high-risk parents differently. And I ask you perinatal professionals to please triple or quadruple the extraordinary levels of patience that you already have with us high-risk parents. I know that this is very frustrating to you, but it is crucial to our struggle and survival that you keep coming back to us.
Advocates of family-centered perinatal care talk about "empowering" parents.
I believe that empowerment is the best thing you can do for high-risk
parents. It implies helping us gain a sense of competence in our parenting
abilities. This lack of competence and confidence can make high-risk parents
jealous of the medical staff, a barrier to communication.
An incubator that is foreign to me separates me from my baby. When I do touch
my baby, I feel clumsy. Most of the time my baby gets attention from others,
whose movements are smooth and assured. I'm only around my baby for a few
hours a day. How will my baby know I'm its father? How can I compete with
nurses and doctors? Jealousy is feeling incompetent about being a parent and
envying others who are doing a better job of baby care.
There are few things that can help jealousy; help it, not take it away.
First, mothers should be told that research has shown that babies learn to
recognize their mother's voices while their babies are still in the womb. So
a premature baby knows its mother, and can tell mom apart from the nurses and
doctors. Realizing this can be reassuring for preemie parents.
Parents can also be led to realize that they can be the only ones in their
baby's life who do not cause pain. It is common knowledge that the lives of
premature babies are filled with pain. Babies have many aversive encounters
with doctors and nurses each day. But parents generally don't draw blood or
put in IVs. Parents can learn to match a soothing voice with a touch that is
always gentle. Tell parents, "Your baby is learning that you are the good
guys. You always bring comfort. You're unique. You are parents."
I would also ask that, if you are not doing so already, you teach us
developmental care of our infants. Teach us about our baby's states; when to
engage, when to stop, when to give comfort. The more we learn about our
baby's needs and how we can meet those needs; the less incompetent we will
feel, the more confidence we will gain as parents. This is a confidence we
will desperately need when you say, "Good bye." to us as a family.
Sometimes high-risk parents put up unfortunate barriers because we believe
that no one can help us unless they've been a high-risk parent themselves, or
had experiences similar to ours. We may cut ourselves off from emotional
help. One way that you can try to cut through that barrier is to become aware
of some common feelings of ours that we don't expect you realize.
I remember a high-risk father telling me a story of how he had lost another bargain. His daughter had suffered many setbacks in the NICU, and he learned through a phone call at work that his daughter had ROP and would be visually impaired. He rushed into his boss and told him that he had to leave for the hospital. He hoped that his boss would not ask, "Why?" But his boss did ask, "Why?" All this father could do was to break down and sobbing say, "They've been taking the pieces away, bit by bit, and there aren't any pieces left." Well, even though this father felt like he had lost his control and his sanity (and he was afraid that his boss thought the same thing), I can't think of anything more normal for him to do. Blindness was one more bitter pill for him to swallow, and swallow it he did; very slowly and with much regret. To refuse the pill would have meant a life of anger, lawsuits, doctor shopping for a miracle, and little joy. Swallowing the pill meant accepting his daughter and her life. To be sure regret and sadness keep coming back to him. But acceptance meant that these lousy feelings could then be accompanied by a joy and love of his daughter for who she is.
In my previous life as a Clinical Psychologist I studied the causes and control of anger and aggression in mice, hooded and albino rats, Carnieux pigeons, and college students. What are the causes of anger and aggression? Frustration, Suffering, and Pain. What do high-risk parents feel; frustration, suffering, and pain. What does the medical staff feel; frustration, suffering, and pain. Yes, high-risk parents are going to be angry. The NICU is a ripe setting for explosions, and for blaming. The explosions get more likely as the NICU stay gets longer.
The normal frustrations of the NICU snowball as weeks go by with no improvement or even a worsening of conditions. When the physicians have tried everything they can, and it hasn't worked, the parents may perceive the medical staff as giving up on their baby. And when parents again ask themselves the question, "Why isn't my baby getting better?" they think of a different answer. The new answer may be, "It's the doctors' fault." There must be somebody to blame. Doctors are in charge, so they are high on the list of those at fault. God also gets blamed a lot. Religion has been a touchy subject on preemie-l, but maybe at a future conference we can come to a better understanding of this. I know that many high-risk parents have stopped believing.
The opposite pattern can also happen during an extended hospitalization. When the medical staff have done all they can with no success, it is natural for them to ask themselves, "Why hasn't baby Laura gotten any better?" And sometimes the answer is, "It's the parents' fault." The parents don't visit enough. Mom is re-infecting the baby with her breast milk. The parents visit too much, get in the way, and overstimulate.
Every member of the medical staff knows that particular parent who is just a walking time bomb. Despite your best efforts to help this parent, you just want to hide when you see him or her come on to the unit, looking for just the least little bit that has gone wrong; and when it has been discovered. Explosion city. I know this drives the medical staff crazy. Why does it happen despite your best, sincere efforts? I think the answer is easy. That parent hasn't been in control of anything in life in way too long a period of time. When I have no control, I am impotent to do anything. But if I look around and find a mistake someone has made, loudly point it out for everyone to see, and get it corrected; I am in control of the situation for a brief period of time. What a great vacation from the frustrations of impotence! It is a fact, in my opinion, that during an extended hospitalization someone on the medical staff is going to make a real mistake. It may be a slight oversight, or it may be a horrendous, life-threatening error. What do you think happened when, without my informed consent, Christopher was run in a research study recording the evoked potentials in his occipital lobe, and then the research team billed our insurance company for the privilege of his being in the study. Was I happy? No, but that event was trivial in comparison to what has happened to many of you.
What do you think happened when a resident decided to impress the Chief Neonatologist during rounds in front of Lauren and me? Christopher had been doing beautifully for the last two weeks, and the staff had been full of confidence-telling us that he would come home as a normal baby, and because of that Lauren and I had trust and hope and were beginning to cope OK. Then the resident says to the Neonatologist that she is going to order a sweat test because of a large meconium plug when he was born. I'm foolish enough to ask, "What's a sweat test." And she is impressive enough to tell me all about the meconium plug syndrome and its relationship to disorders of metabolism, chronic pulmonary infections, possible biliary cirrhosis, cystic fibrosis, and salty skin. And suddenly I'm incapable of listening anymore. I'm terrorized, I'm angry, I feel misled, and I don't trust anyone in the NICU anymore.
I think that the medical staff can do wonderful things to help angry parents, even though I know that angry parents are one of the most troublesome things for the medical staff. It is natural for you to want to avoid angry parents, but please stay with us. When we erupt and explode don't go away, even though you have pressing obligations. Stay there, nod your heads, and let our anger blow past you like the desert winds. Then, in the next day or two, when you sense that we might be more rational, come back to us and re-establish communications. Go over what we were mad about, and show us that you believe that our feelings are important to you. This is crucial. Many times trust is the only possible good feeling a preemie parent has. And there are times for parents when feeling connected with the medical staff is more important that the quality of care given to their baby.
On that hot, August day when I learned about the Sweat Test, the chief neonatologist, Dr. Grauz, kept his eye on us. As Lauren and I were ready to leave, he approached us at the elevator and asked if we would like to talk. We sat in a very hot, Midwest humid, room for an hour and a half while Dr. Grauz apologized for the resident, explained how extremely unlikely Cystic Fibrosis was for Chris, and re-gained our trust. He saved our emotional lives that Saturday.
There is also a nice way to train the NICU staff to respond to angry parents without getting freaked out. Find someone in your hospital or medical school who knows about stress inoculation training. This person could be a social worker, psychologist, or psychiatrist. Stress inoculation for anger involves role playing and practicing listening to someone who is angry. During an in-service a trainer would take turns yelling very reasonable complaints at each staff member (Neonatologists included). Stress inoculation helps to minimize the usual frightened reaction people have when they are yelled at. And in being less frightened and threatened, the staff members can better hear any legitimate complaints. The trainer can also provide coaching to help the staff members keep open the lines of communication.
I could tell you many more stories of parents expressing anger to the medical staff. But I am sure that similar stories are very familiar to you because you have been on the giving or receiving end. I do want to tell you of another form of anger that is even more troublesome for parents. Parents who discover that they are angry with their own baby for they way their lives have been disrupted. And again it's easy to understand.
I can imagine that I am a parent who has been fortunate enough to be pardoned from the NICU after 6 months. I'm lucky in that my baby has only doubled my total debts to $180,000. Thought of vacations, better used cars, or college for my older kids only occur in my sleep. If I'm lucky there is only an apnea monitor in my baby's room, or it could look like a hospital. But I am fortunate, we've only had two re-hospitalizations, and I'm in a parent group so I know other parents have it worse. My wife sleeps listening for the monitor, and she hasn't had a sexy urge in recollection. Everything revolves around the baby, what about me. If this were my boss who had done this to me, I'd resent the hell out of him or her. Instead it's my baby, and somewhere it is written on my soul, that THOU SHALT NOT HATE THY BABY.
A mother, Jennifer, told me her story a few years ago about her concern for her husband. Their baby, Jason, had been home for a few very, rough months. There had been a grade 3 bleed, so they didn't know if their son would develop normally or not. She had appreciated how strong her husband had been, but she was worried that he was stiff, and he didn't appear to be feeling anything. He claimed to be OK, but she knew something was missing.
One day while sitting with him over a cup of coffee, she risked letting her husband in on her secret. "You know, Dan," she said, "I feel terrible about it, but I just wish sometimes that Jason had died during the first few days so we could be over this now." Well her husband just melted into a sea of tears because that was his terrible secret too, and they held each other and cried for a long while. When they realized they felt the same way, their guilt lessened because they understood the reasons for those terrible, alien feelings, and they could appreciate that they were not such bad people after all. And Dan and his wife could loosen up a bit and continue sharing more deeply.
When Jennifer and Dan could look at their worst feelings and appreciate just a little that their resentments were understandable, they could start a process of self-acceptance. And even though the anger toward Jason would come back now and again, the anger became less powerful because Jennifer and Dan no longer had to fear their resentments-they understood them. And Dan, especially, could let himself feel again; and then he discovered more of the neat stuff about being a father.
The best way you can help high-risk parents is to do every thing you can to encourage establishment and growth of parent support systems in your hospitals. And best of all, do whatever you can to have a paid position for a Parent Support Coordinator for your unit, a position devoted totally to parent support. I am biased, obviously, but I don't believe that you can consider yourself as providing even close to full family-centered care unless you have such a position.
I have come to learn that working in a NICU involves a life of short meetings, separations, and endings. You do all that you can for our babies in crisis; and then that relationship ends either in death, transfer, or when you watch parents walk out the door with their babies. These are relationships that are intense and often brief. There must be occasional sadness in these endings. I suspect that the sadness may be more than occasional, but it comes with the territory. Watching a baby go home in the best possible shape is one of your goals. But you are reaching the limits of the technological advances of medicine in Neonatology. Most babies go home to families. I hope perinatal professionals realize that they can do so much more for babies by helping parents gain confidence in the skills of mothering and fathering. The next great advances in Neonatology can come through focusing on the well-being of high-risk families. I believe that the greatest reward that you can have as a professional is knowing that you are sending mothers and fathers home in the best possible shape, with some confidence in their ability as parents. This is how you have already made your most lasting impact, and I thank you for that.
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