TERROR, GRIEF, IMPOTENCE, AND ANGER
Michael T. Hynan, Ph.D.
University of Wisconsin-Milwaukee
I wish to thank you, Becky, for you kind introduction. I also wish to thank the program committee for inviting me. I am honored and touched to be speaking at the last official Parent Care Conference. Parent Care really gave me an outlet for what I felt I had to say and write about having a premature baby. If it were not for Parent Care, I suspect that I never would have finished writing my book. Parent Care has always been very good to me, and I will be forever grateful.
Ever since my son was born and survived I have felt that I have owed a debt- - to doctors, nurses, friends, my family, other parents, and to God. I realized that my payment would come from putting my Psychological knowledge to use to support other parents and help them adjust emotionally to the awful reality of having a high- risk baby. I also hope that I can help perinatal professionals better understand the emotional turmoil felt by high- risk parents, so you can help us as families to get home in the best possible shape. So we can find meaning in our lives that have changed in the worst possible way. That's why I came here. This is a debt I want to be paying my whole life, and its the only debt I have where I receive more than I can give.
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 vacation 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 patents 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.
When I called Dr. Koh that morning at 2:00 am. he said to bring Lauren to labor and delivery. I was so upset driving the 20 miles to the hospital, that I could hardly keep the car on the road trying to see through my tears. When I got to the hospital I drove up and down the street three times looking for a "Delivery" sign. I lucky that they didn't have a delivery sign, or I would have left Lauren at an empty loading dock while I went to park the car. After I had circled the hospital one more time, Lauren had sense enough to tell me to just go to the Emergency room and they would get her up to Labor and Delivery on the third floor. Actually, I'm glad that Dr. Koh did not tell me on the phone that Labor and Delivery was on the third floor, or I might have tried to drive my car up the stairs.
I can smile now when I think of circling the hospital, but it also makes me remember just how afraid I was. And to try to put some feeling into a word, 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 my being scared. I was shaking like a flag in a 40 mile an hour wind when I make 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 ask 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."
And flashbacks can occur decades after our babies are born. Let me tell you another one of mine. It has been 16 years and 25 days since Chris discharged from the NICU. When he was hospitalized we had two cats at home, Ashley (about 8 years old) and Thudpucker (who was 5). They were our surrogate children, as Chris was our first and only child. Anyway, Ashley got very sick while Chris was hospitalized, and she became an intensive care cat. And there was this very nervous and compulsive father talking with veterinarians and neonatologists and biochemists in 2 states about the prospects of bringing a premature baby home to a house with feline leukemia virus. Everybody agreed that it would not be contagious to bring Chris home, although I think I won the yearly award for the most off- the- wall question in the NICU. Some experimental treatments perked Ashely up for a while, so she was at home to greet Chris, 16 years and 25 days ago. I buried Ashely in our back yard about 2 weeks later. I did not have the energy then for 1 more trip to the veterinarians, so I put Ashley to sleep myself when she seemed near death using ether I borrowed from the rat lab at school. That was a big mistake because Ashley did not go gently into the night, so much strength in a near dead cat. I would never do that again, but then I wasn't very sane then.
This story is a background to the fact that 5 years and 11 days ago, I buried Thudpucker next to Ashley in the back yard. And all the memory and the terror of the NICU returns. No sensible psychologist would expect otherwise. But I am very lucky, you see. Not only do I have a son standing there who is very sad, but alive and healthy. I also know that it is normal to feel the terror occasionally, so it doesn't blow me away or make me think that I need to be institutionalized. And we could also use the old fears and sadness to help us put this death into perspective while we greaved. After we held our services for Thudpucker, we talked about Ashley and Thudpucker, how they got along, and about Chris' coming home from the NICU. Lauren talked about the time Thud gobbled down her birthday dinner (a lobster tail) while we weren't looking. And Chris (laughing and crying at the same time) said that Thudpucker taught us to grab our lobster while we can. It was an intimate family moment that I will remember forever.
My colleagues and I have discovered that these flashbacks and vulnerability are more common that 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 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 PTSD in parents after the 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 10 miles 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.
I would like to tell you a couple of stories of different kinds of grieving that two high- risk mothers have given me permission to talk about. Vicki is a 35 year old woman who was pregnant a year ago. After 11 miscarriages this was the longest she had ever carried a baby. I will not go through her history of miscarriages, but I got an upset stomach when she told me about them. Vicki and her husband also have an adopted son, Alex, who is now 3 years old. When Vicki first came home with Alex when he was three days old, she spent the next three days in bed with him. Alex was the only one wearing clothes, and sometimes he was without a diaper. She kissed every inch of him, and Alex became Vicki's baby. (By the way, I don't view this as strange at all.)
Vicki's last pregnancy was going well at 29 weeks, (11 weeks longer than any previous pregnancy) and finally everything seemed to be working out as it should. You can guess the next part of the story. Suddenly, all the emergencies occur, she goes into labor, and she delivers a baby girl, Ariel. But Vicki can remember nothing of the drive to the hospital. Vicki remembers nothing about labor pains, delivering Ariel, or the first few days of the NICU. And I'm not talking about simple denial here. It is a world gone horribly wrong. This memory loss is also not caused by medications. It is big time dissociation to a terrifying experience.
Sometimes what is happening to high- risk parents is so horrible it must be blocked out. If something like this is happening to me, 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 at the same time; it just doesn't register, even if I'm nodding my head. So I ask you perinatal professionals to please 3x or 4x the already extraordinary levels of patience 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.
Vicki is a wonderful mother. She writes songs for Ariel and sings them to her. She has made sure that Alex loves Ariel, and that he feels like a big brother. Since Ariel came home, she has slept on the floor next to the monitor each night while Ariel has gone to sleep on grandma's chest. That way Vicki can see what's happening when the monitor goes off, as it has up to 60 times a night, and take the appropriate steps. Ariel has needed CPR twice, and she often needs vigorous stimulation. Everybody believed that Ariel would be off the monitor by now, but the alarms continue. And Ariel is now 9 months old.
Vicki has had to be more of a nurse and physician than a mother during these past few months. During her few moments of free time, she reads medical journals. Why? Because none of the experts knew what was wrong with Ariel, although they certainly knew something was wrong. It seemed like a lot of buck passing was going on. Vicki heard a lot of ,"This is an interesting case. Please let me know what happens." Vicki hates it when she looks at Ariel and sees symptoms instead of her baby. But by God, she was going to make sure somebody found out what was wrong. Doing more medical research, Vicki found Rufous- Silver syndrome. And the experts have confirmed it. Maybe now, Vicki can focus on just being a mother. Wouldn't that be nice.
Vicki cries a lot, which is very good for her. Vicki is grieving over not feeling like a mother. She has told me, "I love Ariel deeply, but Ariel is not my baby yet. I can't remember giving birth to her." And Vicki can even smile through her tears as she expresses the strange contradiction of having a son, who was not her natural baby, feel more like her child than her natural daughter does. Vicki desperately wants to remember her labor pains and delivery of Ariel, to make Ariel hers.
Ann is the second mother, whose story of grieving I want to tell you. Ann's son, Tony, is truly a miracle baby. His picture and story have appeared regularly in newspaper articles and hospital advertisements. He is healthy, normal (except for a mild reading difficulty), and almost 8 years old;, despite being born at 23 weeks gestation weighing only 400 gm. But Ann gets very depressed every May, and it lasts until July the anniversary of when Tony's twin brother, Bill, died at 2 1/2 months of age. Ann didn't get to hold Bill until they decided that more heroic measures did not justify his continued pain, and all parties agreed to take him off the respirator.
Ann has really driven home to me what the clinical literature says about the emotional problems of having one twin survive. For a long time Ann hated herself because she wanted Tony to die, too. So she didn't have to force herself to keep going back to the horror that the NICU held for her, so she could just grieve. And now, almost 5 years later, she believes that she can begin to deal with her grief. It has taken almost 5 years for Ann to just get the confidence that Tony would live, after he got something like an ear infection. Now she is ready to begin taking care of herself, and to attempt to let go of the pain of Bill's short life and death. But 2 1/2 months is a short time to build memories, and the pain is what Ann remembers. She is very afraid that if she lets go of the pain, she will forget Bill. You see, no one talks about Bill except her husband and Tony, and even that is rare. No one else really confirms that Bill ever existed.
In the last week of Bill's life, when the roller coaster was obviously crashing, all Ann could do on her visits to the NICU was sit next to Bill's isolette and sob. I guess that this upset the staff, because Ann repeatedly got invited out of the NICU to go sob in a room by herself. This still makes me very angry. Please don't do that folks. This is a mother reaching out with everything she has to connect with her baby, please don't interrupt her. Instead, I ask you to acknowledge our pain and suffering, even though it is uncomfortable to you. Tony's survival was going to interfere with her grieving for Bill anyway. But the staff in the NICU put another roadblock in the way of Ann's attempts to connect with Bill, and say good- bye.
Ann is a rather stoic woman. To the casual observer or acquaintance, she will smile and say she's doing fine when asked. She is someone who, on the face of it, has been blessed with a miracle. But her existence for the last 4 3/4 years has been much less than a miracle. Grieving is not something you can do on command. Ann is just in one more stage of coping with her shattered dreams.
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.
Depression. 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 50 miles 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 make 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.
SEXUAL IMPOTENCE. 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 traveling 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. 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. 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?
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 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.
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.
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 those of you in the audience who are 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. Because I don't have a cell- phone and something bad might have happened on the way over. 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.
I ask you to help us when we do silly or dumb things because we are so stressed out. I benefited greatly from a very patient, kind neonatologist, John Glaspey, who was in attendance when my son was born. I wasn't there at the delivery. Lauren had advancing pre- eclampsia, and Christopher's heart rate was dropping. I sat shaking in Lauren's hospital room expecting that C- sections took 45 minutes or so. When John Glaspey walked into that room and told me I had a fine son, I stood up and almost fell down. He gently took my arm and walked me to the nursery to see my son, and told me, wonder of wonders, that I could scrub up and touch my son. He walked me into the scrub room and held out a gown for me. I immediately thought I was in a clothing store trying on a suitcoat as I turned around and tried to back into the gown. "Michael, he gently said, You put it on frontwards as walked around me and dressed me". He then showed me how to scrub and then left the room until I was ready. What you all know is that I scrubbed myself raw for 5 minutes. But what you don't know is that I had the idea that I was supposed to leave the suds on my hands so that I would not infect my son. I left the scrub room and Dr. Glaspey and three other physicians gently smiled as they saw this fool with 2 inches of orange syrupy lather ready to go in and touch his baby. John came over and gently said, "Michael, you need to rinse your hands off and then you need to dry them." I needed all the understanding I could get then, and John Glaspey was right there for me.
And, help us in our bargains; even if it is just by knowing that we are making silent bargains all the time.
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.
I would like to ask perinatal professionals to acknowledge to high- risk parents what great jugglers we have become. High- risk- parents must focus on coping with a series of emergencies or problems to solve. We go through these times paying close attention to one thing at a time while trying to manage two or three together things on the back burner. It is juggling practice. We have to ignore most of the rest of our lives which lie scattered around us. This is necessary. Otherwise we would drown in our sea of problems. So it is 3 mo. of bed rest, emergency C- section, Apgar scores, intubation, transport team, mom gets discharged from the hospital, worries of the other kids, trips to the NICU, lost 20 gm. yesterday, blood gasses, apnea and bradys, belli lights, extubation, the breast pump broke, gavage, room air, gained 10 gm., more visits, gained 40 gm., discharge planning, coming home, apnea monitors,- - Many of you know the story.
In concluding I would like to thank all of you perinatal professionals in the audience for taking on a second job. Your first job is caring for the health of our babies, of getting our babies home in the best possible shape. But, by caring to come to this conference and listen to a parent talk, you have shown a willingness to take on that second job of getting families home< in the best possible shape. By caring for our baby, by supporting our emotional struggles, and by giving us a< foundation for our future. By being our companion on the journey from incompetence to confidence.
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 handicapped 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.