ON AUTUMN’S WING
A STORY OF BIRTH TRAUMA,
BRAIN INJURY, AND MIRACLES.
by
Heather Winkeljohn
©2011 by Heather Winkeljohn
heather.weinberger@comcast.net
Published on Smashwords
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FOR HELEN
my grandmother
whose shoes will never be filled
and
to all the parents of children with special needs
who stand in the “center of the fire”
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TABLE OF CONTENTS
CHAPTER 2: In the Delivery Room
CHAPTER 3: What’s Wrong with My Baby?
CHAPTER 5: Justice for Autumn?
CHAPTER 8: Early Learning and Growing Problems
CHAPTER 11: The Future: Three Views
REFERENCE LIST from the Foreword
AUTHOR’S COMMENTS, NOTES, AND RESOURCES
Basic requirements for assisted vaginal birth
How vacuum extraction works and why it can do damage
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FOREWORD
This book brings into focus several important issues. The first has to do with instrumentation used to assist delivery of an infant; second is informed consent to use instruments for delivery; third is the patient/healthcare-provider relationship. Last, but hardly least, is how these first three issues affect the family in the long term. Let us consider each of these concerns.
Instrumentation used to assist delivery of an infant. To begin, a little history: To facilitate the delivery of a living child, obstetrical forceps were developed as early as the seventeenth century by the Chamberlain family of British physician-midwives (who maintained the forceps as a proprietary secret through four generations). During the next three centuries, the design of the original instrument was gradually improved for functionality. The development of another type of obstetrical instrument, called the vacuum extractor, has been credited to James Simpson (1849), a Professor of Midwifery in England. For a century, this instrument did not receive general acceptance for its use, but based on the same concept, in 1953, Swedish obstetrician Tage Malmström developed the modern vacuum extractor.
Since its introduction, the vacuum extractor has been modified and further refined. Currently, in the United States, the vacuum extractor is used two to three times more often than forceps. In a retrospective study, published in 1999 in the New England Journal of Medicine, D. Towner and others reported the types of deliveries in 583,340 singleton (single baby, not twins) nulliparous women (first-time mothers) in California from 1992 through 1994. The rate of spontaneous (natural) vaginal deliveries was 66.5 percent, while 20.1 percent required cesarean sections. In 2.7 percent, forceps were applied. In 10.2 percent, a vacuum extractor was used. The combined use of forceps and vacuum extractor occurred in 0.5 percent of vaginal deliveries. What is notable here is that the authors reported a statistically significant increase in brain hemorrhages in babies delivered by vacuum extractors compared to the spontaneous vaginal deliveries.
In May of 1998, a Food and Drug Administration (FDA) Public Health Advisory cautioned healthcare providers—including obstetricians, nurse midwives, birthing centers, pediatricians, Ob/Gyn nurses, family practitioners, hospital risk managers, hospital Ob/Gyn departments, and others—about possible life-threatening complications to the infant with the use of the vacuum extractor to effect vaginal deliveries. Following the FDA’s advisory, in September 1998, the
American College of Obstetricians and Gynecologists (ACOG) Committee on Obstetric Practice wrote:
The Committee on Obstetric Practice believes that, as with any other obstetric procedure, obstetric care clinicians using vacuum-assisted delivery devices to effect operative vaginal deliveries should be appropriately trained and familiar with the indications and contraindications for the use of the device, as well as with its proper application and traction procedure. The Committee on Obstetric Practice strongly recommends the continued use of vacuum-assisted delivery devices in appropriate clinical settings.
During a six-month period following the FDA May advisory, M. G. Ross and others, upon examining the FDA database, noted a 22-fold increase in the rate of reported adverse events, such as infant deaths due to hemorrhage, either intracranial (in the brain) or subgaleal (below the scalp but above the skull bones). The rate of these rare but potentially lethal events could increase further in the presence of 1) a large fetus with shoulder dystocia (fetal shoulder too big to fit easily into mother's pelvis); 2) a prolonged second stage of labor (from complete cervical dilatation to the delivery); 3) the application of the vacuum cup over the anterior fontanel (the soft spot) of the head; 4) excessive pressure and force of traction; 5) multiple pop-offs of the vacuum cup; and most important, 6) the misuse of the vacuum extractor by a poorly trained operator.
The author of this book, Heather Winkeljohn, was a nulliparous woman bearing a large fetus (Autumn’s birth weight was about 4200 grams, or 9 pounds, 4.5 ounces), exhibiting occipital posterior presentation of the fetal head (back labor) with probable shoulder dystocia, and a prolonged second stage of labor.
Informed consent to use instruments for delivery. In his December 1999 editorial comment about birth injury and method of delivery (the study by D. Towner and others), Dr. Thomas J. Benedetti, from the University of Washington in Seattle, stated, “The decision to attempt operative vaginal delivery should not be made without knowledge of the risks involved for both mother and infant. The question of how and when these risks should be discussed with the mother remains unanswered.”
In 2000, at a medical meeting on perinatal care, sponsored by the University of New Mexico, Dr. William F. Rayburn stated, “Educating pregnant women and their partners about the potential risks of operative-assisted delivery, using good technique, and thoroughly documenting the procedure can help reduce the physical and medico-legal risks associated with these deliveries.” The article quotes Dr. Rayburn further: “It’s essential that parents are fully aware of the available options, including vacuum and forceps deliveries and cesarean sections, the reasons for taking these steps during labor, and the potential complications for both the mother and fetus.”
In a paper published in the Southern Medical Journal in 2006, C.M. Nichols and others conducted a retrospective study reviewing 346 medical records from 1992 to 2005, assessing the documentation frequency of informed consent for women undergoing a trial of nonemergent (where there was no emergency) instrumental delivery. In 61 percent of the cases they found only general hospital consent for instrumented vaginal delivery. Documentation of any maternal or neonatal risks was found in three percent and zero percent, respectively. A 2009 technical review paper by Ali and Norwitz from Yale University stated, “Once the obstetric care provider has confirmed that the patient is an appropriate candidate for an operative vaginal delivery, informed consent should be obtained. This can be either verbal or written. Either way, the potential risks, benefits, and alternatives to operative vaginal delivery should be discussed, and the discussion should be clearly documented in the medical record.”
Patient/healthcare-provider relationship. During labor and delivery, mother and fetus are in a vulnerable state. Although a physiologic and natural process, parturition is associated with pain and anxiety. A professional, courteous, and compassionate attitude should be maintained by the healthcare providers toward the mother in labor to ease and alleviate both expressed and unexpressed concerns, in order to develop a trust relationship between the healthcare providers and the patient. Any intervention being considered by the healthcare providers should be for the benefit of the patient. The patient should be fully and truthfully informed, and the intervention method should be chosen by mutual decision of the patient and the healthcare provider in order to respect patient’s autonomy. Occasionally, time may not permit for an in-depth explanation of benefits and potential dangers of obstetrical intervention for delivery; however, some explanation, no matter how short, should be made in consideration of the best interests of the patient.
Long-term effects on the family. After nine months of a normal pregnancy with hope and anticipation of a joyous event, a poor delivery outcome brings about very deep emotional distress and a grief process. For a dedicated mother, the stage of guilt process is long and may be interminable, even though she did not bring about the problem. What Mrs. Winkeljohn describes about the disintegration of her family unit may be typical in these types of circumstances, rather than unusual.
I have great admiration and respect for Mrs. Winkeljohn—for her tenacity, intellectual ability, and expression of her thoughts. Her book brings to focus certain issues with medical care in general and obstetrical care in particular. She describes a lack of respect for human dignity and autonomy in making decisions about her health care and well-being. Her book may not change obstetrical care drastically in the United States, but it does empower expectant mothers to retain their human dignity and autonomy. It gives them essential information that is otherwise sorely lacking. Expectant mothers should participate in making decisions about their obstetrical care during this crucial period of their lives.
Houchang D. Modanlou, M.D.
Newport Coast, California
December 2010
Note: Houchang D. Modanlou, M.D., is presently Clinical Professor of Pediatrics at Loma Linda University and Adjunct Professor of Pediatrics/Obstetrics and Gynecology, Retired, at the University of California, Irvine (UCI). Dr. Modanlou retired in 2010 after 38 years at UCI. From 1977 until mid-2010, Dr. Modanlou was Chief of the Division of Neonatology and Program Director of the Neonatal-Perinatal Medicine Fellowship Training Program. From 1972 to 1977, he was Assistant Professor of Pediatrics, UCI; during that same time period, from 1972 to 1975, he was Associate Director of Nurseries, UCI Medical Center. In addition to his work at UCI from 1975 to 1994, Dr. Modanlou held the double posts of Director of Neonatal-Perinatal Medicine and Director of Newborn Services at Miller Children’s Hospital, a part of Long Beach Memorial Medical Center in Long Beach, California.
Dr. Modanlou is the author and co-author of over 400 articles, research studies, and letters. A list of Dr. Modanlou’s most recent published journal articles appears at http://lib.bioinfo.pl/auid:831962. A source list of references quoted in the foreword appears on page 133 of this book.
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INTRODUCTION
Everyone has a story, it’s true. But what’s also true is that the most important parts of everyone’s story are usually not about what they choose, but what chooses them: the events that happen because they were in the right place at the right time or, just as likely, in the wrong place at the wrong time. Those unforeseen events are the ones that change your life, set you off on a path you never imagined or planned, until the place you end up is very different from where you intended to be.
It’s also been said that suffering redeemed is preferable to suffering avoided. It’s better to come through the fire and survive, the theory goes, than never having had to go near it in the first place. Just as a broken bone that has healed is often stronger and can better withstand pressure, sometimes those unpredicted events that threaten to break us create instead a strength greater than we thought possible.
Even so, even with the promise of greater strength or wisdom or insight, who would choose to walk through the fire? Not many people. Perhaps that’s why we don’t always get to choose the events that shape who we become. And even if, after being forced through flames, we do emerge stronger, who among us would willingly let someone else suffer the same way if we could prevent it? Experience may be the best teacher, but it is a very harsh teacher. Some of us do what we can to protect and warn those who come after us. That’s what this story is: it’s a tribute to my daughter, Autumn, but it’s also a cautionary tale.
The first and most significant event of Autumn’s life happened before she was aware of even having a life. It happened before she was actually outside my body, truly born. She suffered what’s called a “birth injury,” although we didn’t know it at the time. I’m not crazy about that term; it makes it sound as if what happened to Autumn was an unavoidable byproduct of simply being born. It’s also generic and benign sounding. I don’t believe that what happened to Autumn was unavoidable. It certainly wasn’t benign.
Autumn will never know what was taken from her. She will live her life, doing the best she can, learning and growing and knowing she is loved. It’s my lot to carry with me the ashes of the life she might have had. But “what might have been” is background music. You can hear it, if that’s what you want to focus on. I don’t have time for that; Autumn doesn’t have time for that. The only reason to listen to the past is to help make sure it doesn’t become someone else’s future.
It doesn’t interest me who you know or how you came to be here. I want to know if you will stand in the center of the fire with me and not shrink back.
It doesn’t interest me where or what or with whom you have studied; I want to know what sustains you from the inside, when all else falls away. I want to know if you can be alone with yourself and if you truly like the company you keep in the empty moments.
— Oriah Mountain Dreamer, Indian Elder
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“Juror Number One, please state your finding as to the verdict.”
“No negligence, your honor.”
“Juror Number Two, please state your finding as to the verdict.”
“No negligence, your honor.”
“And Juror Number Three, please state your finding as to the verdict.”
“I . . . I’m not sure . . .”
“Excuse me?!”
I had never been inside a courtroom before I had a baby, not even to protest a traffic fine. I never expected to be in a courtroom. One thing I know for sure: judges and courtrooms were the farthest things from my mind that bone-chilling winter five years earlier.
It’s the dead of night in the dead of winter, and I am wide-awake. For days now I have suspected that I am pregnant, and in the bathroom, just steps away, there’s an ominous unopened box waiting to confirm my suspicions. I glance over at my boyfriend, Paul, dead to the world on his side of the bed, blissfully unaware that my next trip to the bathroom could change his life forever. And my life? I couldn’t begin to imagine.
Paul and I have been dating for ten months. At thirty-nine and divorced, he is eleven years my senior and already has two daughters, teen and preteen. How would he feel about the news I might wake him with? How will I feel? I have to find out; I can’t stall any longer. I rise silently from the bed, sneak into the bathroom, doddering across the ice-cold floor in bare feet, and tear open the box. I pull out the pregnancy test. Nervously, I scan the instructions.
Error-Proof Test, it says.
If this were a movie, the camera would decorously cut away to the second hand sweeping around a clock, as I worked through the test and waited for the result. In real life, momentous events don’t necessarily happen so gracefully.
I straddle the toilet, one hand awkwardly clutching my silk nightgown bunched up around my waist to save it from about-to-be-sprayed urine, while in the other hand, I hold the pregnancy test. I have never done this before; I’m tense, hoping I don’t make a mess of myself and of Paul’s bathroom. I’m so nervous and unfamiliar with this whole test thing, I can’t pee. Finally, my muscles relax, and I am peeing on the stick. Also on my hand. When I am done, I look down at the dripping test stick and realize that, in fact, I have forgotten to remove the protective cover. Frustrated and disgusted, I toss the test in the trash and wash my hands. I’ve wasted the test, wasted my pee, and wasted my time. “Error-Proof Test,” my ass. I’ll try again in the morning.
And so it is, while Paul is making breakfast, I try again. With my newfound pregnancy-test-taking expertise, things go much more smoothly. This little test will probably be negative, I think, and I can go about my day. Paul knows that I am already about five days late for my period, but he agrees with me that it is probably a false alarm.
To my amazement and excitement, the test almost instantly reveals a positive result. Stunned, I walk into the kitchen where I stand dumbstruck. I nod, and Paul gasps. To my relief, he is thrilled and perfectly fine with getting married, even though he is somewhat in shock.
The next day is my birthday, so when my mom calls, I give her the news. She is as astonished as we were, but likes Paul and is content for me to marry him. We make plans to get married on Valentine’s Day. I remember feeling really bloated trying to fit into my red dress.
It was not what you could call a well-planned wedding. We were married in a small Old Town chapel by a minister we didn’t know. Paul was dressed in jeans and a straw cowboy hat; his two girls, our witnesses, came rushing in late from horseback riding, also wearing jeans and western shirts. Crushed that no one had bothered to dress up (and even more taken aback later on when I saw Paul's pictures of his second marriage with him sharply dressed in a tux), I felt a lot happier when a good friend of mine showed up to take our wedding pictures.
So two weeks after the pregnancy test, there we were—a married couple, looking forward to the birth of our first child.
* * *
CHAPTER TWO: In the Delivery Room
We each have our personal dramas. If my life were a movie, the months of my pregnancy passing would be represented by the pages of a calendar flying by, filmed with up-tempo music. If it were a cartoon, my animated body would be shown overinflating like a human blimp. When time is flying and your life and body are changing so dramatically, you don’t have a lot of opportunity for navel-gazing (although when you’re getting that big, your navel is in everyone else’s face). I was just living and growing, becoming a whole person. For Pete’s sake, I had a husband and two stepdaughters. My life and body were blooming, blossoming, expanding. I was thinking ahead to a happy, normal future, and only a little concerned about getting back to an exercise routine. When I was nine months pregnant, I scoped out a gym, planning ahead to take classes and get back in shape after the pregnancy.
And then it was time. On September 28, 1999, I met with my obstetrician, who had been following me throughout my pregnancy. Because of my tachycardia—my heart was working extra-hard to produce enough blood for both the baby and me—and because I was large enough to be visible from space (okay, she didn’t say that, but she did refer to my “large size”), the doctor felt that they should induce labor the very next day. Only one problem—she couldn’t be there. As you can imagine, I was a tiny bit apprehensive about this, what with the rapid heartbeat, an abdomen the size of a hot-air balloon, and giving birth for the first time. She had told me from the beginning that it is not very common in their practice that a patient actually gets the doctor she’s been seeing for prenatal care, so I shouldn’t expect to get her. Now, it makes little sense to me that a woman would spend nine months getting to know and trust her doctor, building rapport with her, and then be obliged to settle for someone to deliver her child who knows nothing about her other than what appears on the necessarily concise chart. But my doctor assured me that all her colleagues were capable and that I’d be in good hands. And really, what choice did I have?
I got the sense that this would very likely be a c-section (cesarean section), based on the release she had me sign. The baby's large size may have been an indication for a c-section. I do know that fetal macrosomia (birth weight in a newborn above 9.72 pounds [nine pounds and fourteen and three-fourths ounces]) has been thought of as a possible indicator for c-section because large babies, like Autumn, are more likely to experience shoulder dystocia (difficult labor in which the shoulder gets stuck because the fetal shoulder is too big to fit easily into the mother’s pelvis) or, rarely, asphyxia (lack of oxygen). The idea of induced labor was to prevent further increase in the growth of an already large fetus.
Be that as it may, the date was set. I went home, packed my bag, and Paul drove us to the hospital. I was admitted to the hospital at seven thirty in the morning of September 29. By eight fifteen they had me started on an IV Pitocin® drip to induce labor. When I had dilated enough to be eligible, I was given an epidural. It took me until about seven o’clock that night to reach seven centimeters. I remember feeling a lot of pressure in my lower back and later realized that it had been because I was experiencing back labor from Autumn’s being face up, rather than face down. Finally, one of the procession of nurses, residents, and possibly a passing janitor peeking between my legs, proclaims the news: I’m dilated to seven centimeters. I’m wheeled into the delivery room.
I was surprised at the appearance of the room. Instead of a cold-looking hospital room with a metal bed and glaring overhead lights, the delivery room looked almost like a hotel room, only with tile floors. In that setting, for some reason, the phone looked out of place. I remember thinking that it was odd, but probably convenient. I didn’t spend much time thinking about the phone, because just then my labor nurse entered the room, replacing the pleasant nurse who had gone off-duty.
Now, there are nurses, and then there are nurses. Picture a dial with Florence Nightingale at one end and Nurse Ratched from One Flew Over the Cuckoo’s Nest at the other. It wasn’t Florence glaring at me from the foot of my bed as I prepared to give birth.
“It’s time to push,” she commanded, in a voice that brooked no argument. My mother began to leave, as I had planned on having only Paul with me for the delivery. The nurse did not consult me about my plans. She recruited my mother to stay and hold one of my legs. Paul held the other. If I hadn’t been so terrified at that point, I might have laughed at the image of myself as a human wishbone. And if I had wanted a private family moment, it no longer mattered. There could have been television helicopters flying overhead with cameras trained on my vagina and waiting for breaking news, for all I cared.
An hour passed. Instead of calendar pages flying by, picture a second hand dragging itself, slowly and painfully, around a clock face. I pushed and pushed when instructed by the nurse, to no avail. However, my drill-sergeant nurse continued to command me—erroneously, but in no uncertain terms—to keep pushing, never realizing that the baby was face up.
Neither did the disorganized and distracted doctor, who was in and out of the room so many times I lost count. Somewhere along the line, I got my first real look at the doctor who would deliver my baby. Short, homely, heavy-set, with glasses, her dark hair piled on her head in a bun—somehow all that, combined with an air of distraction, did not inspire confidence. At this point, though, I was feeling neutral about her, just hoping she could get my baby born, and soon.
My mom and Paul were becoming more and more anxious as I kept pushing. My mom was getting frightened because I was so red in the face—she was worried that I might have a stroke. Paul at one point leaned over to tell me that his groin hurt from all that pushing. I didn’t know if I should laugh or belt him one.
Nearly fourteen hours from the start of the Pitocin drip, at 10:00 p.m., the doctor, who had finally decided to pay attention, examined me and directed me to stop pushing immediately because, she said, the baby was in the wrong position, face up instead of down. I had wasted all that time and energy, not to mention stress on the baby, for nothing!
“We have to get the baby to turn,” she said.
Any hope of dignity vanished as the doctor reached in, while informing me that the baby’s shoulder was stuck and she was going to turn the baby. Whatever manipulations she made in my nether regions, they were unsuccessful.
I was more miserable and afraid than ever and, added to that, feeling abandoned every time I saw Paul periodically go over to the phone to check up on his younger daughter, Emily. She was, we hoped, waiting at home alone.
We had had an argument over with whom his fourth-grade daughter would stay during the delivery. We had wanted her to go to a friend’s house while we were at the hospital, but she had thrown a fit, demanding on staying at our apartment. Frustrated, but in no shape to contend with the issue, I was angry because he’d had a day to prepare and make arrangements and he hadn’t done it.
Paul’s problem child was ten years old at the time and living with us. She had refused to stay with a sitter or her mom or with friends, and he had finally agreed to let her stay at home. It hadn’t occurred to him that the labor might go well into the night, when Emily would be home alone. It hadn’t occurred to him to insist on a sitter for her or, for that matter, to be a parent and insist on anything. As a result, he was pulled in two directions, attending to me in the delivery room and to her on the telephone. With my labor progressing ever later into the night, he became a nervous wreck.
Meanwhile, the doctor continuously entered and exited the room as if she were caught in a revolving door. Imagine a Charlie Chaplin movie. Never having given birth before, I hadn’t known what to expect, but I sure hadn’t expected this. I felt completely at the mercy of the people who were supposed to be helping me give birth, and all I could do was what I was told.
What I was told next was that the doctor was going to try a certain technique—one, I later learned, she had never actually been trained in and had never previously tried—called “shaking the apple tree,” which she had heard about from some midwives to free stuck shoulders (she told us Autumn’s shoulder was stuck). I found out later that it is called the Gaskin maneuver, one of several things that this doctor didn’t know.
The doctor instructed me to get down on all fours. I don’t know if you have ever attempted, while nine months pregnant—and, thanks to the epidural, unable to feel the lower half of your body—to move from lying flat on your back to dropping to the floor on your hands and knees. I don’t recommend it. I can do this, I said to myself, before vanity crept in and I wondered for a moment just how I looked to the others in the room—I felt like a birthing cow.
I did manage, with help, to get onto my shaky hands and knees. The doctor placed her hands on my hips, and began to sway them back and forth. While this was going on, another nurse popped her head into the room and barked that the doctor was needed “Now!” in a room down the hall for another delivery. My fearless nurse was unmoved and waited for the doctor to finish shaking my tree—fruitlessly, as it were. Then the doctor left the room without a word of reassurance or explanation. I was moved onto my back, shaking, all right—uncontrollably—and sweating, and I began pushing once again¬ (the doctor’s instruction as she walked out the door had been to push). So my mom, Paul, and the nurse stood by as I pushed.
Another couple of hours passed. Finally, the doctor returned and looked at me reprovingly. I had been pushing for over two hours since the tree shaking, but she told me that I needed to push some more or she would have to do a cesarean section—which, as came clear later, is what she should have done. I felt as if I were inconveniencing her, as if I had disappointed her somehow for having failed to give birth. Then three hours and forty-seven minutes after first realizing that the baby was in the wrong position, the doctor changed tactics once again, and decided that the next step should be to use a vacuum extractor. My mother became alarmed when she heard this.
“I’ve heard those things are dangerous,” she protested.
“Only if they’re used too many times or incorrectly,” the doctor said, dismissing the protest, “and I’m only going to use it once.”
By this time, I was too fatigued to mount an effective protest. And she was a doctor, dedicated to healing. She’d made it through medical school. I had to believe that she wouldn’t employ a device she wasn’t competent to use. Surely not when it came to a baby. She believed it was the right thing to do; who was I to challenge her? She didn’t tell me about the risks the procedure carried; I wasn’t given any information on it or told I could refuse it. Would I have refused it even had I known I could? My own doctor had told me I would be in good hands. I had to believe that I was. Nevertheless, had the doctor said to me, “We can use vacuum extraction and here are the risks, or we can do a c-section, and here are the risks for that,” I would have said “Let’s go c-section.” I wasn’t given that choice.
The doctor took the cup of the vacuum extractor and placed it inside me, on the baby’s head. Apparently, the baby’s head was swollen, and it was difficult to feel for the correct placement of the cup, which should be placed over the center of the head. As a result, the cup failed to seal to the head properly and with an ungodly loud “POP!” disengaged, forcibly sending the doctor sailing several feet away. “What was that?” we asked, stunned. “It’s just the cup popping off,” the doctor responded, as if it were an expected part of the procedure. (I found out later that it is not a desirable part of the procedure.) She regained her balance, moved forward, and readied for a second attempt.
At the end of this try, there she was: Autumn Leigh Weinberger, weighing all of nine pounds and four-point-eight ounces, looking beautiful, and as far as I could tell, healthy and normal. There was a round red area over her soft spot from where the vacuum extractor cup had been attached. Because of its shape and size, we referred to it as the “can of tuna.” I couldn't tell who she looked like and was so exhausted I could scarcely feel the joy I’d so often had described to me. But aside from that, I was enchanted with my little girl, named after another girl whom I remembered as the prettiest in my school. Enchantment went only so far, I am sad to admit, because I was still in serious pain from the whole experience. It felt like an eighteen-wheeler had barreled down my birth canal, not a baby.
I had been torn during the delivery, and my nurse had icily informed me I would have to wait for the doctor’s return to be stitched up, while Autumn was under the light being examined. Not having any other options, I cooled my heels—in the stirrups—and waited for the doctor. After she finally returned and completed her handiwork, the nurse told me I needed to get up and walk around and pee. This would have been significantly easier if one leg had not still been numb from the epidural. I had the feeling this nurse would have been happy to hand me my baby with my bag of personal items and send me home. As it was, my leg buckled when I tried to take a few steps; Paul managed to catch me before I hit the floor, and, on his arm, I proceeded to the toilet.
The places where I wasn’t numb ached as if my bones had been pulled apart. Of course, they had been. I wondered why no one ever told me how badly I might hurt after the delivery, although I don’t know whether I could have fully comprehended if they had. I asked the nurse for additional pain medication; I’d had one Percocet®, but it wasn’t working. She left the room, apparently to retrieve it, but returned after a long while to tell me that the doctor had declined my request. Why, I will never know and no one could ever explain.
So many questions go through my head about that whole day and night and what I wish that I, as well as my husband, had questioned or insisted upon. But I was in my late twenties and very trusting of doctors. I had never had any reason to not trust them. I’ve since learned that you should always question them and advocate for yourself. Until recently, no one would have thought to question a doctor’s decision. Patients just did what they were told. Most doctors never bothered to explain, and most did what they thought was right. Others did what was convenient for them. But the best doctors sit down with you and take the time to explain all the whys and wherefores.
Paul went home around one o’clock in the morning, to let me get some rest and to check on the unappeasable Emily. I couldn’t rest, couldn’t sleep, because of the unrelenting pain. The next morning I found out from my own doctor, the one who couldn’t attend the birth, that I surely could have had more pain medication; the order was listed in my chart. I was angry that I was made to suffer, apparently for no good reason. But I would gladly have endured a thousand times that pain, if it had meant I would be spared the other unimaginable and unimaginably painful consequences of that doctor’s incompetence.
* * *
CHAPTER THREE: What’s Wrong with My Baby?
On October 1, 1999, Paul and I brought Autumn home. I was still exhausted from the labor and delivery. Considering that, you’d think that a baby who slept would be exactly what I wanted. And of course it was, up to a point. The problem was that Autumn wasn’t waking to nurse. The nurses at the hospital had told me that she would likely awaken every two to three hours to nurse. Instead, she was waking up only every five to six hours, which alarmed me.
I had a magnet on the refrigerator with the number of a local hospital’s nurse hotline. I called, and the nurse I spoke to was somewhat concerned that Autumn wasn’t making wet or dirty diapers very frequently. She gave me some tips for waking Autumn and keeping her alert and encouraging her to nurse. I had only a little bit of success: Autumn would wake up, nurse for a few moments, and then fall back to sleep. My mom, who was staying with me, tried to console me. She felt that we had both been through an exhausting delivery and that things would get better.
But the next day and night were, if possible, worse.
It was a perfect storm of postpartum hormones, my own exhaustion and pain (the doctor had failed to do an episiotomy, and I had torn badly), and my worry about Autumn. In contrast to the first night, when I could barely wake the baby, the second night home she began crying and screaming inconsolably. The only way she would quiet down was if I held her snugly against my chest. My mother slept that night on the couch with Autumn clutched to her that way, in the hope that I could steal a few hours of sleep. I couldn’t. I was so anxious over whether Autumn’s next attempt to nurse would be successful that I couldn’t drift off. Each session in which she didn’t nurse well raised the stakes for the next one, and my worry level increased exponentially. At that point, I was living for her “well baby” checkup with the pediatrician two days later. By Autumn’s third day home, she was sleeping a little bit better, but she still wasn’t nursing well. The pediatrician suggested that Autumn’s problem might be gas, or, even though she was a little young for it, colic.
In my panic that Autumn was not gaining weight as the weeks went by, I stopped trying to nurse and switched to formula when she was two months old. The formula did seem to help a little, but I was still concerned. My pediatrician advised me to add some over-the-counter drops to her formula, but nothing I did made much of a difference with her eating. The doctor noted “failure to thrive” on her chart, and he advised me to try some different formulas.
During this same time, we had noticed that Autumn’s head circumference seemed to be increasing at a much faster than normal rate, which, in combination with everything else, alarmed me. The pediatrician, whom I considered a little old-fashioned, was not overly concerned at that point. He theorized that maybe it was genetic or that she just had a “big head.”
At Autumn’s November appointment, just after the pediatrician had checked her eye tracking, I asked him to check it again. Paul and I had noticed that Autumn always seemed to be looking off to the left. She wouldn’t follow anything, even me, that moved to the right. The doctor confirmed my observations. It was the very definition of mixed feelings: on the one hand, a professional was validating my concerns about my baby, not telling me I was hypervigilant or crazy. On the other hand, what I really wanted to hear—and believe—was that my baby was perfectly all right. But based on what the doctor was observing about Autumn’s eyes and her disproportionate head size, he was ordering a CT scan to rule out hydrocephalus.
Most people think of hydrocephalus as “water on the brain,” but it is really a condition in which the regulation of the cerebrospinal fluid is faulty, and pressure builds up in the brain. It can cause an increase in head size such as we were seeing, and can require the installation of a shunt to drain the excess fluid into the stomach. It was a horrifying thought, but I couldn’t bring myself to believe that was what was really happening. I was scared, but told myself that everything was going to be just fine. We scheduled the scan for December 15. It was about that time we noticed that Autumn occasionally had tremors in her right arm.
The same day that the CT scan was done, the pediatrician called and told me that we needed to see a neurosurgeon with Autumn, so that the results of the scan could be explained to us. The hope that Autumn’s problem was something minor and temporary drained away with those words, and I stood there, paralyzed, waiting for something more, something to temper this news. But the doctor offered me nothing more than the neurosurgeon’s contact information. No comfort and no reassurance.
I hung up the phone, and every loss in my life came crashing back over me like ocean waves.
I’d lost my dad in a car accident when I was eight. He was one of those dads that the neighborhood kids flock to and want to include in all their games. The little brother of one of my friends used to come and knock on our door to ask if Bobby (my dad) could come out to play.
I have one older brother, also named Paul. Our childhood in El Paso, Texas started out to be as happy and normal as any child could wish. I was the epitome of a daddy’s girl. Mom was the disciplinarian and dad was the funny guy I wanted to impress.
When I was eight years old, my dad started his own landscaping business (he had a degree in art) and we had just moved to a new little fixer-upper house. Dad had to go meet with some workers and was getting ready to leave the house for the evening. I remember begging him to let me go with him and he adamantly refused. He hardly ever had to be firm with me, but this time, he was.
I was awakened about three o’clock the next morning by my mom, my grandmother, and my aunt, all huddled around my bed, to tell me that Dad had died—my mom had actually gone to look for him and found the wreck. I got up in the dark, got dressed, and left the house with my aunt. I remember sitting in my aunt’s living room, hoping to catch something about it on the local news. All I had been told was that he’d had an accident. It came on the news and I saw his car hiked halfway up an old cottonwood tree, about three blocks from our house. My cousin scolded me for wanting to watch, but it was the only way I could make sense of what had happened. My only experience with death up until that point had been backyard memorials for deceased guinea pigs and goldfish.
My mom was overwhelmed after Dad’s death, as devastated as Paul and I were, to say the least. She had never been a “cookies and milk” mom. Now it was all she could do to keep us clothed and fed. It was Grandma Helen, my dad’s mother, who nurtured me after Dad died. Grandma Helen (“Mee Maw,” we called her) was sick with breast cancer but still managed to sit down with me every day after school. Never complaining of her pain, she played games and helped me with my multiplication tables. She was my mentor, the person I adored most in the world—but only nine months after Dad died, Mee Maw succumbed to the cancer.
Right around the same time, while Mee Maw was still alive, Mom’s horse fell on her and shattered her pelvis in eight places. I was home the day it happened. I remember feeling angry towards her and her boyfriend, Richard, right before the accident, wishing it had been she who had died and not my dad. Then that horrible accident happened and she was in the hospital for several weeks. I felt very guilty for having had those thoughts—and I was scared.
Mom and Richard ending up getting married after he swooped in like Prince Charming to help her recover and be a “father” to us. Soon after they married, we relocated to the Albuquerque area; their nightmare marriage lasted nine years.
Richard was as full of darkness as my dad had been full of light. Extremely intelligent, but controlling and eccentric, he was abusive to my mom emotionally, verbally, and, on occasion, physically. He would throw things that shattered frighteningly. He and I butted heads like no other. Sometimes, he would try hard to win me over, but I had no respect for him. I recognized him as a manipulator. One time, he was so upset with me about some minor infraction of his rules that, while I was at a Christmas Eve service with the rest of the family, he loaded up all my Christmas presents in his sports car and prepared to give them to the “more grateful” hookers downtown. My mom begged him not to and had to make all kinds of concessions to prevent his doing that. Such dramatic occurrences were common in our household.
Frustrated by my “wall” and lack of affection towards him, Richard made it a rule that I had to hug him when he walked in the door. He would pat his chest as if I were a dog he expected to jump up. I rebelled against him throughout the near-decade it took Mom to break free of him. We all survived, but some of the sweetness of my childhood was irrevocably lost.
Two days before Christmas, Paul and I met with the neurosurgeon. If I was looking for reassurance, it wasn’t immediately forthcoming from this source.