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The world of parents of children with disabilities.

IT ALL STARTED WITH KATIE'S JITTERS. SHE emerged from the womb, a slender baby and incredibly long to this new father's eyes, and she was jittery," as the doctor and nurses said. They suctioned her, dried her, wrapped her in a towel, took her to be weighed, and brought her back, and said she was jittery - like a baby who had been badly chilled. The doctor said it could be various things, and various possible solutions would be tried, especially making sure the levels of sugar and certain minerals in the blood were correct. The baby was born at 10:30 a.m. in the morning; by 4 p.m. in the afternoon, the doctor was telling me the baby would travel from our local hospital to Minneapolis Children's (MCMC) by ambulance. At one point she said it might be something "neurological," so I heard that word in connection with Katie before she was a day old.

Friday was Day 3, and late in the afternoon, Dr. B. found us (Katie was now in the Transitional Nursery) and told us the results of the MRI. This is another scene we will never forget. The doctor began to tell me the results as we stood outside the nursery, right where he had found me. I asked him to wait and tell Laura at the same time, so we went to the Family Lounge where Laura was waiting, still resting from her ordeal. Magnetic Resonance Imaging is a new technology that allows images to be taken from different angles and perspectives, allowing for a complete and precise picture of the structure of the brain. We still have a copy of some of the pictures Dr. B. discussed with us that day Katie, it turned out, was almost completely missing her cerebellum, and this fact explained her jitteriness and hypertonicity The implications were still extremely unclear. She could have severe disabilities, not only in motor coordination, but in intelligence as well. On the other hand, some good outcomes were also possible. The doctor told us that some patients with little or no cerebellum had been able to walk and, indeed, had been "handicapped" very little. We clung to the hope he was giving us, but we also started getting used to the phrase "brain damage." We both knew our lives had changed, and we had entered a different world - the world of parents of children with disabilities.

We want to try to recall some of the special experiences, good and bad, which we could only have had in this different world into which we have been plunged. Many episodes concern our own case, but we have learned a great deal from other parents as well. The first kind of experience I would put under the heading "learning just how miserable life can be." All parents have stories about rough nights; as one nurse told us, everything is scarier at night - it seems worse even if it is not. Parents of "special" children have stories that seem to come from way off in the Twilight Zone. We know a mother who has had her baby sent off by helicopter with pneumonia - not once or twice, but five or six times. She and her husband have also given CPR in the night - sometimes more than once in the same night.

By comparison, our stories are mostly of the "losing sleep" variety, but we will never forget the night before the long hospital stay. We had gone to the Cities to see various doctors, mostly to prepare for the insertion of the stomach tube.

We also had other problems to discuss. Laura had been sure from the beginning that Katie snorted too much, as though she were straining to breathe. The cardiologist, whom we had waited two weeks to see, confirmed immediately that the heart murmur was caused by a problem in the airway. We stayed the night in a special residence attached to the hospital, so as to see Dr. B. the next day and discuss all the problems we had seen and heard about. As soon as Dr. B. saw Katie, he decided she should be admitted to the hospital.

The night before, however, after seeing the cardiologist and other doctors, we were on our own with her, knowing she was very sick, not knowing whether to call a doctor, and if so, which. We paced, we sang (we sang a lot in those days; it was always "Bicycle Built for Two" with gavage feedings), we tried to comfort her, and she would not sleep. She snorted and wheezed, she squinned and choked (she was still regurgitating). We had to give her two or three gavage feedings; she did not yet have the "built-in" tube which would make life so much easier. By the end of the hospital stay which was about to begin, we would be able to give her a sedative to ease her agitation; on that night we had nothing, and it was easily the worst night of either of our lives.

The second worst was probably when we brought Katie and all her equipment home for the first time, after a month in the hospital. We had not planned well and had left the trip till too late in the day. We simply could not figure out all the equipment: a humidifier to supply humidity for the trach (as the mouth and nose usually do), a compressor (incredibly noisy) to force in the humidified air, a suction machine, and another machine for lung care called a "nebulizer," along with the apnea monitor we had before. As the hour grew later, we grew increasingly desperate. We had to phone and ask which tubing went where and to complain that the humidifier ran out of water in about two hours. (Were we going to have to be up in the night, not for the baby but for this machine?) It struck us very forcibly that we had reached yet another new low in our hopes for the future; Katie needed all this equipment, it would be hard to look after her while seeing her fail to develop, and it looked like we would be on our own. When family called that night, we simply could not talk.

Helen Featherstone has written beautifully and wisely, drawing on the experiences of many parents, about the feelings such an experience can evoke: anger at fate, God, the baby and the situation; guilt mixed with anger at oneself, for it is hard not to feel responsible or at least not to feel singled out, as if one were guilty of a terrible sin; fear of the future, of what the child might do next, of one's own feelings; wild fan tasies about somehow ending it all or escaping. We have had many of these feelings, and others which are equally impossible to discuss in polite society, on nights such as the ones I have described. Often the only thing that can lessen such grief and rage is to be able to share it with others.

Our first initiation into the "club" of parents like us came with classes we were expected to take before we could take Katie home for the first time - when she was about 10 days old. One class was on the apnea monitor, the other on CPR, or emergency life-saving. Most of the parents we met had babies whose only problem was premature birth. "Preemies" often require massive medical intervention in the first year of their lives, but in most cases, almost miraculously, they show no lasting serious ill-effects. Still, the parents of "preemies" were as scared as we were and, at that point, we could not be sure Katie was much worse off, even in the long term, than their babies. The anxiety, hurt and fear we all felt was deliberately heightened by our teachers; after all, as they told us, we were going to be on our own, in the middle of the night, with a baby's life at risk. We all had to demonstrate our knowledge almost as quickly as we acquired it. There was nervous laughter, but the atmosphere was extremely tense. The teachers could say everyone suffers some apnea - pauses in breathing and all parents, at least, should know CPR, but you know perfectly well that you are in deep trouble when you are in those classes. We will always remember the father of twins who had trouble responding properly to a staged alarm. One twin was sicker than the other, but both would be at risk - did the father simply have too much anxiety to think straight? We were taught to let the alarm "beep" 10 times, while we watched the baby for a color change, to see if the baby corrected herself. One mother always rushed to shake the doll in front of her, representing her baby, without waiting for 10 beeps. "I can't help thinking the baby might die," she said.

In the long hospital stay, covering slightly more than the month of September, we met many parents. Those whose children had serious birth defects were most like us. One morning, Katie had seizures for the first time and Dr. B.'s partner, who was covering for him, had to take charge, ordering medications and sending Katie to LSU (Intensive Care) as a precaution. Laura was there without me, and another mother she had barely begun to know came to her in tears and hugged her. "I don't know why I'm crying," she said. "It's not even my baby." They laughed and cried together, and have stayed in touch ever since.

What can one say about the camaraderie among "special parents"? We meet in hospitals and doctors' waiting rooms, and as often as not, we introduce ourselves by giving a condensed version of our child's medical history. Often there are tears, yet there is a lot of laughter. I tend to think this is partly a reaction of relief. No matter how unfortunate we are, we would not trade places with other parents in distress; somehow, they seem at least as unfortunate as we are. Laura says this is too cynical and that it is simply that comradeship can cheer us up: for a moment, at least, we are not alone, as we so often are at home. We know people in similar situations, and perhaps they can even help with stories and information. A hospital, where one can meet with other parents and professionals, can be a place to catch one's breath, ease the desperation a bit and gain new hope - especially if there is a good chance that medical treatment will bring real progress. Laura and I have not joined a parents' group, perhaps because we have been afraid of being the worst-off parents, but we are always amazed at meeting people who show strength and even cheerfulness in impossible situations.

It seems right to deal next with the health professionals with whom one comes into contact. Most of the books by parents of special children say that "everyone has a horror story about one or more health professionals." We have no such stories. All the professionals we have met have done at least the jobs that are expected of them; many have sought ways to help us as best they can; and more than a few have gone well beyond the call of duty.

We have been especially impressed with Katie's doctors. They have taken long periods of time to talk to us when asked and have always taken the time to explain what they are doing. They have shown concern and respect for us, as well as great attention to Katie's needs. One example is the talking-to we got about nursing. As we prepared to take Katie home after her long hospital stay, we were urged to agree to have nurses come into our home. The subject came up at a big care conference which was supposed to deal with all of Katie's care. By this time, Katie's overall care was in the hands of pulmonologists, or respiratory specialists. (I sometimes call them "lung guys.") We dealt with several partners, but we eventually made Dr. W Katie's primary doctor, and he presided at the meeting. Dr. W. has a tremendous bedside manner and has always been able to make us laugh in dark times. When I asked why we would need nursing, however, he became a bit stern, perhaps to dramatize his point. We think you need nursing, he said, because we have seen other families go through similar situations, and they have suffered, with or without nursing. We have seen stress, we have seen people unable to further their careers, we have seen families break up. Laura and I agreed to accept nursing; a few weeks later, it was unthinkable to be without it.

It was Dr. W. to whom we went recently to ask, among other things, about changing Katie's status to DNR - "Do Not Resuscitate" in a case where Katie cannot breathe on her own or suffers a drastic change in heart-rate. Dr. W. said he knew we had been through agony," and that he was sure that a DNR order would now be among the acceptable options for us. When we asked him what he would do, he first said he had never been in our situation; we feared he was going to duck the question. Then he said he would do everything exactly as we had done it - waiting as long as we did and preparing for a DNR order now. We could not have asked for more support at this difficult time.

I must say something about the nurses we have had in our home, although it is hard to know what to say. They have relieved us of hours of difficult care; they have enabled us to sleep at night; often they boost our morale by the way they talk to Katie and seem to enjoy her. We have gone very quickly from being strangers to being almost family with some of them. It helps us, and makes our lives richer, just to be able to talk things over with them. They leave notes for each other, as we do for them, in a "communication book"; they usually end with a happy face, so when one of them has something like a warning to offer, she naturally uses an unhappy face. We know they will not keep coming forever, and we will miss them.

I should also say something about t e financial support we have received. Our insurance, through my job as a college professor, has paid almost all the bills, and various government agencies have helped out with the rest. If this had not been the case, of course, we could not have afforded a fraction of the care Katie has received. It is up-to-date medical care which has allowed her to live so long, and very modern kinds of insurance and government benefits which allow for the bills to be paid. Everyone is concerned about the costs of health care and insurance in the United States, and it may be worth considering that in many ways Katie's case is not unusual: She required a lot of expensive care at a time when the eventual outcome, in terms of her health and quality of life, was very uncertain.

We often feel that in talking about our situation, it is hard to go beyond emphasizing the pain - above all, seeing all of one's hopes for a newborn child dashed over a matter of months. It is hard to describe this strange, isolated world we live in - what Edna Hong has called "Paindom" - to outsiders, and hard for them to understand. In the eyes of religious believers, I suppose, there are no outsiders, for such pain unites us all as suffering humanity under God. We always feel singled out and isolated, however, even from other "special" parents. We are suspicious of stories, written for a general audience, with a happy ending: either the child gets better, or the parents learn to accept the situation.

I am a teacher, so I'm inclined instead to take what Laura considers a too-academic approach and raise a teacher's question: What have we learned from our life with Katie, our life in the different world into which she had led us? Most mundanely, we have learned that medicine is not an exact science, and that this is especially true of neurology. In technical terms, for example, function in the brain cannot be inferred from structure: If part of the brain is missing or damaged, sometimes the function normally associated with that part does not disappear - the rest of the brain seems to adapt. Much more frequently, brain structure can appear normal to every existing test, while the expected function is missing; this is the case with Katie, for most of her brain looked fine at birth.

In a similar vein, but more significantly, we have learned that it is often hard to tell which babies are going to "make it," in almost any sense, and which are not. Any confident judgments about such matters should be treated with skepticism. Knowing what we know now, would we have wanted Katie to live these months? In a sense, of course not, but her diagnosis took time, and we have never felt it is for us to say her life is not worth living. We find ourselves envying parents of children with "milder" conditions, some of which can be detected before birth. Can such parents ever be sure it is better to end an unborn child's life by means of abortion? On the other hand, we may be better off than parents whose children are normal until a certain age and then are struck down in some terrible way. Often, no technological fix is offered in such cases; why should it be in others? This becomes both a personal matter for us, and a matter of principle, for we have both supported the pro-life cause, and many people would say we have now learned why abortion must be available in hard cases. I do not think this is true; Laura is less sure, especially because it would be so horrible to go through an experience like ours a second time.

Finally, we have learned a kind of patience, for we have tried hard to take whatever joy Katie can give us and she has given us some. Arguably, our experience has made us and our marriage stronger, or made us more aware of our strength, and it has caused family members to rally round us in a way that has been very moving. If life were reducible to numbers and proportions, there would be no way of making these satisfactions, limited as they are, balance our terrible grief - but it is just possible that we human beings are not meant to think this way.
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Author:Robertson, Lloyd W.
Publication:The Exceptional Parent
Date:Apr 1, 1991
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