Today I will talk about each of the emotions of terror, grief, impotence, and anger as they occur in high- risk parents. You will learn about my family and how we experienced these unfortunate feelings during my son’s birth. And you will also hear the stories of many high-risk parents, who have shared their emotional struggles with me. I hope to be able to put some substance and feelings into abstract works like grief and impotence, to express the feelings that many times we high-risk parents hold back- - because we are afraid people and especially the medical staff will think we are crazy and that we can’t handle our crises.
I will make one point again and again today, and I’ll start now. During a high-risk birth 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 like I am addressing a meeting of the veterans of the baby wars. If you have been in the life and death battlefield of the NICU, you are going to be disorganized and upset for months- - some of us for years. We 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 are signs that we parents are doing well, not poorly.
In this decade we don’t have the same nation- wide fear of having the hydrogen bomb dropped on us compared to the 1960s. But if I had my choice, I would choose to spend my time in a fall- out shelter with a group of high- risk parents. They know first hand about loss and love, about struggling and surviving.
First, let’s talk about terror.
On July 18, 1980 my wife Lauren and I were finishing our first European holiday in an out-of-the-way place called Haaren in the northern Netherlands. Her pregnancy had gone beautifully, and were having a wonderful time. Ten days later we were the terrified parents of 1,200 gm., 30 week baby- boy Hynan. Thank God we were back in Milwaukee. As all of you know this is not the way the world is supposed to work. Both my wife and my son, baby boy, were in life threatening situations; and we felt overwhelmed with the stress we were feeling. But we also realized much later that, in a strange way, the worst times of a crisis are also the easiest times for a family. Terror is the easiest emotion to handle when the danger is at its worst.
It sounds contradictory to say that the worst of a crisis is also the easiest time for parents, so I’ll explain myself. Hans Selye (1956), a well known expert in the area of stress reactions, has written about the stages of a crisis reaction. The first stage is the Alarm stage. This stage is when the danger is at its maximum, and we feel like we are facing a loaded gun. In the Alarm stage people generally pull together to fight the common foe. Everyone’s attention is focused on coping with the danger facing us. We don’t have the time to figure out the best way to cope, or to worry about how well we are doing. We just do it, and husbands and wives tend to do it together.
Five days before my son was born I woke up at 2:00 a.m. when my wife called out to me from the bathroom. When I got there I found her sitting in the bathtub next to a large clot of blood. That was horrible. It was very clear then that there were only three things to do. Call the doctor, get dressed, and get us to the hospital. We were terrified, but it was a simple situation to cope with because so much was out of our control. And Lauren and I were together in coping.
Another thing about the Alarm stage is that people make silly mistakes, but we are not bothered by them. Our attention is so narrowed with coping with the immediate danger around us, that we forgive ourselves when we miss a lot of what happens.
I would like to read to you a short excerpt from a magazine article that I resonated to. I knew what Mr. Jerry Adler was talking about when he wrote this piece titled, “WHAT IF YOUR WORST NIGHTMARE CAME TRUE: A FATHER’S TALE”, which was published in Esquire in 1988. As I read this I ask each of you to remember that time in your life when you were most afraid. When you found it almost impossible to just breathe and talk at the same time.
Jerry Adler writes,
“There are two phone calls that will haunt my dreams forever, that evoke between them all the hope and fear of the most passionate experience of our lives, the birth of a child. The second of these calls I made myself, to my own parents, the night of the day my younger son was born. I was 37 then, and it had been years since I had called on them for help or advice on any subject except income taxes. But I had just watched “my child” come into the world, rigid, his face gray as dusk, contorted in outrage at finding himself in a place that seemed to have no oxygen. I had run alongside his crib, down the empty corridors of the hospital, and then waited in the cheerless hall, while the doctors cut a hole in his throat to let him breathe.
I had seen him sleeping in his nest of wires and tubes in the urgent glare of intensive care, watched the jagged green shadow of his pulse on the screen above his crib. When there was nothing more for me to do in the hospital, I went home and dialed a number in Florida.”
“Oh mama,” I said, “I’m so scared.”
“I am still scared. I am scared of the thin cotton ribbon that goes around my son’s neck and holds in place the plastic tube through which he breathes. Cut the ribbon, the tube falls out, and he asphyxiates before your eyes. I know this is true because once, in the hospital, they let me change the tube so I would have some practice for an emergency. I got everything ready and cut the tie and pulled the old tube out of his neck, and then, because no one had told me where to put it down, I held it in my hand for a couple of seconds. In those few moments my son’s face turned blue as denim. ...I am still scared, even though he has been home now for more than a year - his hospitalization lasted about a Summer - because he is 18 months old and cannot use his mouth to talk or to eat, cannot sleep except with a nurse sitting in his room to watch for his voiceless cries, cannot go anywhere without a checklist of medical supplies sufficient to outfit an expedition to the headwaters of the Amazon. ...And I am scared because the day is drawing closer when he will understand that this is not how life is meant to be, and he will ask me why. Now that he is at an age when he would normally be saying a few words, he is starting to pick up sign language quite quickly. Someday we are going to sit down and have a conversation. I am, however, afraid of what he will say.”
This story certainly makes me remember me being scared. I was shaking like a flag in a 40 mile an hour wind when I made my phone call at 5 am, 4 days after Lauren was hospitalized. “Mom, I got a call from the hospital. The baby’s coming. It’s time to pray.” And I also remember that when you are that frightened that it does take a supreme effort to just talk. And my son’s grandmother and great- grandmother said many rosaries together early that morning as he struggled to escape from his toxic womb.
When our babies come home, terror is over, by and large, except when the monitor sounds and our baby requires vigorous stimulation or CPR; but grief, impotence, and anger continue for parents - for months and sometime years. Parents have asked me many questions. But, would you like to guess at the question I get asked most frequently by parents, parents whose high- risk babies are now healthy and 8 years old, or 12 years old. The question is, “Will I ever get over this, will I always be afraid”. Will I always feel so vulnerable?”
Parents ask me this because they expect themselves to be over the crisis of a high-risk birth. Because so much time has passed since their baby was discharged, because their child is so “objectively” healthy, parents start doubting their sanity when they feel a sudden rush of panic at the little things that typify any parent’s life. Scrapes and bruises, strep throat, chest congestion, and in my case an ophthalmologist using the term “galloping near- sightedness” to describe my son’s vision. These experiences can bring back the terror of the NICU.
My answer to this question is simply, “No, you will not get over this completely. It is normal for you to feel the after shocks of this emotional earthquake. Many of us high-risk parents have this vulnerability and these flashbacks to the NICU. And we also know that terror usually returns only briefly, and most of the time we can manage it as long as we realize that it is not unusual.”
My colleagues and I have discovered that these flashbacks and vulnerability are more common than most professionals expect. We have a research article on Post-traumatic Stress Disorder (or PTSD) in mothers of high-risk infants that just came out in the Journal of Perinatology. When it was accepted, I found the reviewers comments interesting, in that a couple of them stated that they had never thought of the possibility of PTSD in parents after NICU. Well, I would not have thought about it either (my symptoms of PTSD are quite mild); except for the number of parents who confided in me about their flashbacks and feelings of vulnerability about their lives.
When the initial terror lessens parents begin to cope with our second emotion, grief. And some parents cope with grief their whole lives.
First, parents grieve over the loss of their dreams of the perfect childbirth. Lauren and I were supposed to be in a recovery room, together, holding hands with a pink, 7 pound baby snuggling by her breasts. We were supposed to be exhausted, but in ecstasy after a natural childbirth. I did not want to perform my first and only baptism that day. What we got was an emergency C- section. Lauren had been unconscious, and I wasn’t there. Lauren was just recovering consciousness when the transport team wheeled our son in for a brief look. Lauren had to stop vomiting when she turned and tried to focus. And what were her first words to her baby. All Lauren could say was and I quote, “It’s hard to believe anything good could come of this.” Those are not the words of an ecstatic mother. This was not our dream. Instead, we had intense, terrible images which, as many of you know, are very hard to deal with and which come back to haunt us.
The second part of grief is called anticipatory grief. It happens when we prepare ourselves emotionally for the possibility of our baby’s death. To avoid being overcome by this terrible fear of death, anticipatory grief helps parents to prepare for the worst possibilities. Anticipatory grief is a natural reaction, and it has some benefits. It insulates the vulnerable high-risk parent from even greater pain.
One example of anticipatory grief is the fact that some parents of premature babies delay naming their baby right after birth. These parents feel that it would be easier to adjust to their baby’s death if they gave it no name. Even though I baptized our son, Christopher, in the first hour of his life; I avoided giving him an “official name” for three days. I also avoided telling anyone other than close relatives and friends that Lauren had given birth until Christopher had survived for four days. I figured that it would be easier for me to tell co-workers and acquaintances that Lauren had miscarried. It would have been much harder for me to say that we had a baby who lived for a day and then died. This lie was the result of anticipatory grief. I was trying to keep my feeling of sadness from overwhelming myself. Anticipatory grief also prevented me from calling Lauren’s mother and telling her she had her first grandchild until Chris had been alive for a week. You see, I knew that I could not face that conversation until I could give mother some hope, and it took a week of life for me to feel hope.
Anticipatory grief is hard to deal with because it forms a temporary barrier against the deepening of bonding between parents and their sick baby. When we prepare for death we insulate our feelings. The more we love our baby, the worse we will feel if he or she dies. So anticipatory grief both helps parents and causes them confusion. When our babies have survived for a few days, we may wonder why we don’t feel more attached to them. We may think we are terrible parents because we don’t love them more. This can be confusing and upsetting, but it helps to remember that anticipatory grief is a normal process. The job of parents at this stage is to slowly begin to take the additional risks of deepening their attachments with their baby. This is hard, but necessary. It has also been done by millions of high-risk parents.
Grief is also difficult because often husbands and wives cope with it at different times. I believe that the grief process takes much longer for mothers, who have usually formed more of a bond with the baby in their womb. I also believe that mothers have sharper images and stronger expectations for the dream of a perfect birth. So you should expect that mothers and fathers may be out of synchrony in coping with grief. Lauren and I sure were. Four days after Christopher was born, I had already spent many hours with him. I was beginning to be a father. Lauren was 5 kilometers away in another hospital. I remember eagerly describing him to her and showing her his Polaroid picture. I couldn’t understand then why Lauren could only look at his picture for only a few seconds, before putting it in a drawer. The differences in our feelings then were difficult for me to understand. Now the reasons are very obvious to me. But those differences point out that coping for a couple becomes more difficult as the danger decreases because husbands and wives may be on different wavelengths.
There is a common problem that high- risk parents suffer. When our babies start to get better, most of us high- risk parents suffer from an illusion that now our lives can return to normal. This is an illusion because we are still reverberating emotionally from the biggest shock of our lives. We believe that we could control our feelings and lives now, and return to that mythical peace of stability. But our feelings won’t let themselves be controlled the way we want. This is the time for impotence, the most dreadful of the emotions of high- risk parents.
Impotence means that we have no power over our lives. Depression is one form of impotence that I am would like to talk about now.
About two weeks after Chris was born Lauren became very depressed. Lauren and I can sit back now and realize that there were many good reasons for her to be depressed. She had lost the cherished vision of a natural childbirth. She was recovering from emergency Cesarean surgery. She had been afraid she was never going to awake from the anesthesia. Her baby was going to be in the hospital for at least another month. Many of you can sit back and think of your own reasons for depression at this time. It is obvious that Lauren’s depression was a very normal reaction to what had happened.
This was uncomfortable enough, but what made things worse was that Lauren thought she shouldn’t be depressed. On the surface our lives were getting better; but Lauren had to conserve all her energy just to express milk, travel the 25 km’s to the hospital to see Chris, and get out of bed to eat dinner. Even this was more than she could do. Washing her hair one morning took so much of her small reserve of energy that she had to spend the rest of the day in bed. Lauren didn’t want to feel like this so she made the common mistake of saying to herself,”I shouldn’t be depressed, I’m going to stop feeling depressed.” Then Lauren began to fight her depression, and she lost. Her depression was a normal reaction in the first place, and its expression would not be denied. When Lauren found out that she could not control her depression she became even more depressed that she was not in control of herself. Then it was back to bed.
This was one of the few times that my training as a clinical psychologist helped our adjustment. I had my own feelings of depression at this time, and Lauren’s depression depressed me even more. As a husband I was tempted to say, “Don’t be depressed. There’s nothing to be depressed about now.” The psychologist in me made me realize that saying that would have been just as wrong and stupid as saying, “Stop bleeding.” when I saw Lauren in the bathtub three weeks earlier. So I was able to help Lauren see that she was not going crazy, that her depression was normal, and that it would go away more rapidly once she had accepted it and worked through it.
Lauren and I were lucky to find a way to help each other during our times of frustration and exasperation. We developed a catch phrase to let each other know that we had survived this far, and we would probably be alive tomorrow. Lauren would look at me and say, “All it is, is hard. All this is, is hard.” Saying this helped us realize that we had come through some rough times, and we could cope with this frustration, too.
A second type of impotence is the sexual kind. One of the very hard things about coping with a high-risk birth is watching your love life disappear. Psychologists are well known for talking about sex, but psychologists seldom discuss their own sex lives. I’m going to break that tradition today. My sexual relationship with Lauren has been an enjoyable and important part of our marriage, but sex is not one of the main things that keeps us in harmony. We do not find ourselves filled with passion at every turn, but we usually preserve some time on the weekend to enjoy ourselves. For us sex is more of the frosting on the cake than the glue which holds us together. Although at times intercourse does serve as the act which brings us together if we have been travelling separate emotional paths.
Our first two sexual contacts after Chris was born were full of intense intimacy and passion. I remember them clearly. After that our sex life went down the sewer. Lauren was depressed when I was interested, or I was depressed when she was interested, or we were both too drained emotionally and physically. It is not too difficult for high- risk parents to share the fear of what another pregnancy might bring; but it is harder to say things like, “I’m just not interested in having sex with you.” or “I’m sorry, but your scar turns me off.” or “No, when I get aroused I lose breast- milk, and all that milk is for Chris.” It is well known that any normal, full-term birth will disrupt loving sexual relationships. I believe that it is important to acknowledge that high-risk births cause even greater sexual problems, especially for couples for whom sex is the primary way of expressing love.
As professionals and members of parent groups we should openly discuss the fact that sexual disharmony is often a normal reaction to a high-risk birth. If this is acknowledged, parents can begin to accept this disruption of their lives. This acknowledgment can remove the pressure for having sex, and allow parents to rediscover their own sexuality when the time comes.
I have talked with high-risk parents whose sexual relationships have been disrupted for years. This is very unfortunate, but it is not difficult to understand. If you know that you almost died from childbirth, or if you spend a year always concerned with an apnea monitor; you are not going to feel very sexy. But it can get worse. If your partner does feel sexy and pushes you for a little of the old romance, you’re probably going to freeze and resist the pressure. Then a problem that ordinarily takes only months to resolve may become a constant problem. Nothing is guaranteed to work perfectly, but open communication and agreeing to take the pressure off having intercourse is often helpful. Parents have told me that if they stopped expecting themselves to be the lovers they were before, they were surprised to find their sexual interest returning.
Jealousy is another type of impotence. When jealousy occurs we often don’t like it; but, again, it is a normal feeling for high- risk parents. 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 its father. How can I compete with nurses and doctors. Jealousy is feeling impotent about being a parent, and envying others who are doing a better job of baby care.
There are a few things which I believe can help jealousy. Help it, not take it away. First, mothers can be told that research has shown that babies learn to recognize their mother’s voices while they are still in the womb. So your premature baby knows who you are, and can tell you apart from others. Realizing this can be reassuring.
Second, parents can realize that they can be the only ones in their baby’s life who does not cause pain. We know that the lives of high- risk babies are filled with pain. Babies have many aversive encounters with doctors and nurses each day. But parents don’t draw blood or put in IVS. Parents can learn to match a soothing voice with a touch that is always gentle. Your baby will then learn that you are the good ones. You’re unique. You are my parents.
And finally, I ask that all NICUs teach us parents developmental care of our infants. When we walk into the NICU for the first time, we high risk parents are totally incompetent. I believe that one of the jobs of the professionals in the NICU is to help us as mothers and fathers to gain confidence in our ability as parents. So teach us about our babies states, when to touch, when to stop, how to soothe. Some people talk about this as empowerment, I like to think about it as helping us to be confident parents. When that happens, jealousy go out the window.
I hope that you can see that I believe that terror, grief, depression, impotence, etc. are some of the lousy feelings that are reasonable to expect as parents cope with their shattered dreams. These emotions are signs that parents are coping well with the crisis, not doing poorly.
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. Yes, high- risk parents are going to be angry.
It is a fact, in my opinion, that during an extended hospitalization someone on the medical staff is going to make a mistake. It may be a slight oversight, or it may be an horrendous, life- threatening error. And than the mistake meets the angry parent.
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 time trust is the only good feeling a parent has. And there are times for parents when feeling understood by the medical staff is more important that the quality of care given to their baby.
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 it gets 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.
I would like to ask perinatal professionals to consider doing some things for us high- risk parents, to help us cope with our shattered dreams. Often high- risk parents put up unfortunate barriers because we often believe that no one can help us unless they’ve been a high- risk parent themselves, or had experiences similar to ours. And we cut ourselves off from emotional help. One way that you can try to cut through that barrier is to realize some of the common feelings we have that we don’t expect you know about.
That sometimes it takes a great act of courage to just get out of the car in the parking lot and walk into the hospital to visit our baby. That we worry when we visit that we won’t find our baby in the isolette where we expect him or her to be. And tell us that even if our baby is not there some day, it does not mean the worst. That it may just mean that you haven’t had time to tell us about the move before we visit. That you know that when our baby is hospitalized, the ringing of the phone at home can sometimes cause the worst feelings of panic, even though we know they are unrealistic. Please acknowledge to us that you recognize that we are having a confusing turmoil of feelings that are the worst we could ever imagine, and that you are not afraid of our feelings.
Acknowledge that it would not surprise you if bringing our babies home didn’t present some new problems in the future. Do everything you can to encourage establishment and growth of parent support systems in you hospital. 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 toward parent support.
Being a high-risk parent is facing a series of bargains, bargains that seldom come out even, bargains that we often lose. Bargains like, OK, I’ll give up my dream of what giving birth to a beautiful baby should have been like; as long as my baby can be healthy and come home at term. Or, “ Ok, doctor, I’ll accept the ventilator as long as it will help my baby get better and she doesn’t go blind. Or, “If its that bad, I’ll accept the risk of ECMO as long as my baby might live. I’ll accept blindness as long as she can walk, and talk. Or I’ll accept Cerebral Palsy as long as he can just smile. Adjustment for the high-risk parent means making unacceptable losses acceptable, and adjustment is never complete. But giving up lost dreams and accepting what we do have is simply necessary, if we’re going to resume living our lives as a family with any joy.
I remember a father telling a story of how he felt when he learned through a phone call at work that he had lost another bargain, that his child had RLF and would be visually impaired. He rushed into his boss and breathlessly told him that he had to leave for the hospital. He hoped his boss wouldn’t ask why, but the boss did. All this father could do was break down and sobbing he said, “They’ve been taking all the pieces away, bit by bit, and they’re 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 joy and a love of his daughter for who she is.
An abbreviation for terror, grief, impotence, and anger is TGIA. For me TGIA also means, “Thank God I’m Alive. “ These emotions come with life, hand in hand. High-risk parents know that love means more than champagne, holding hands, and romantic walks on the beach. Love also brings blood, sweat, many tears, and feelings of terror, grief, impotence, and anger.
After the passage of months or years most high-risk parents do have a set of realizations that their crisis is resolving itself. What these realizations mean is that their family has gone through the necessary process of coping with shattered dreams. Life has changed; a lot of it for the worse, but some of it for better. The dream of a perfect birth is gone, but that is alright now once we have largely accepted that our lives have changed. Parents, even if they have a multiply challenged child, begin to experience the pleasure of their new love; and in feeling this love, parents recognize that at least parts of life, again, can be good.
All it is, is hard.