Eight Fingers
and
Eight Toes
______________________________
Accepting Life's Challenges
Debbie Jorde
Columbine Press
Copyright 2010 by Debbie Jorde
All rights reserved. No part of this book may be used or reproduced by any means, graphic, electronic, or mechanical including photocopying, recording, taping or by information storage retrieval system without the written permission of the author, except in the case of brief quotations embodied in critical articles and reviews.
Some names have been changed to protect privacy.
ISBN-13: 9780983116219
LCCN-2010913071
Cover design and photo: Logan Madsen
Back Cover Photo: Melissa Papaj
www.debbiejorde.com
First American Paperback Edition
Printed in the United States of America
Dedicated to my loving husband, Lynn, and my amazing children, Heather and Logan.
Acknowledgements
As I thought about all that I've learned from being Heather and Logan's mother, I realized that I didn't want to die one day and have all the valuable lessons die with me. So I wrote my story, partly from memory and partly as events were happening. When I completed the first draft, I asked a few people to read my manuscript and offer feedback. Some of my readers were anonymous, but I would like to thank the readers I know--my beautiful daughter, Heather Madsen, not only shared her experiences and contributed her insightful writings, but read and edited each draft; my sister, Kathy Cherrett, read the first manuscript from start to finish and supported me through the book’s completion; my sister, Shelli Lether, not only supported my book from start to finish, but validated and honored me by viewing me as her role model and teacher; my friend, Kathy Newton, whose praise and support helped me believe in my ability to write the book. She gave feedback throughout the process and edited the final proof for errors. Kathy also gave my manuscript to Annette Haws, an English teacher, who edited and made helpful suggestions. Thank you Carolyn Green and Sara Brozovsky for editing.
After I finished writing my first drafts, I knew I needed an editor to make it read better. I am deeply grateful to my amazing husband, Lynn Jorde, who financed the professional editing that achieved this goal. Thank you, Lynn for your love, patience and support through the years of writing my book. My appreciation to Jayne Pupek (www.jaynepupek.com), the writer who edited my manuscript. Jayne is the author of three books: "Tomato Girl," a novel, and two poetry collections: "Forms of Intercession" and "The Livelihood of Crows." Thank you, Dr. John Carey, for writing the beautiful foreword to this book. I asked Dr. Carey ten years ago if he would write a foreword for my book. He agreed, and when the time came, he wrote a foreword which exceeded my expectations.
My story would not have been published without understanding, insights and encouragement from my creative and witty son, Logan Madsen. The theme and design for the cover of the book are Logan's ideas and he shot the photos for the cover and for some interior pictures. Logan is an artist www.loganmadsenfineart.com. He paints with acrylics and oils, has an associate degree in graphic design and has an artistic eye with photography.
I would like to thank my brother, Shaun Lether, for designing my website, sharing his marketing knowledge and skills, and for encouraging me to publish my book. Thank you to my mom and my dad for loving me and being proud of my successes. Thank you to my brother, Cloyd Hepworth, for his love and support. Cloyd's daughter, my talented, niece and award winning photographer Melissa Papaj, took some photos for the book, photos for my website and personal use, and edited the black and white photos for the interior of the book. Her website is www.melissapapaj.com Thank you, Melissa. Thank you, Uncle Willis, for reading my book and giving me many fine suggestions. I would also like to thank my niece, Desi. for reading my manuscript; I appreciate Sara Brozovsky for doing a final read to edit for type errors.
I would like to offer a special acknowledgement to Terry Madsen, Heather’s and Logan’s father, who shared the early days of fear and uncertainty with me and later gave support during some tough times.
My gratitude to Rubin St. James, Heather's loving partner for the past five years. Having him as a member of our family and a loving partner to Heather is invaluable. Thank you, Rubin.
My appreciation and admiration to the researchers at the University of Washington and the University of Utah, and other institutions, who participated in finding the genes responsible for Miller syndrome and the primary ciliary dyskinesia. Finally knowing "Why" has given our family closure.
I’m grateful to both Margaret Hogan, founder of the Foundation for Nager and Miller syndrome (www.fnms.net), and DeDe Van Quill, for their ongoing support in making the FNMS a successful organization that supports families affected by these syndromes. And a heartfelt thanks to the financial donors who make it possible for the families to come together from all over the world every two years, and to all the people who help make those conferences a success.
I would also like to thank the staff at the University of Utah Behavioral Home Program for the excellent medical care they give to Heather and Logan.
A heartfelt thanks to all my customers and my good friends. Your support through life's many challenges over the past thirty-five years has been invaluable. My gratitude also goes to the many people who have supported me and touched my life, but whose names are not mentioned here.
I've had many experiences to share with limited space in which to include them. In choosing the stories I've included, I've left out others. All the people involved in this story would tell something different from what I have chosen. One day, I hope Heather and Logan will tell their own stories. Responsibility for errors or omissions is mine. If I have misrepresented anyone in any way, I apologize. For the sake of privacy, I changed many names.
Eight Fingers
and
Eight Toes
______________________________
Accepting Life's Challenges
FOREWORD
“They have disabilities, but they are not their disabilities.”
When Debbie Jorde asked me to write the foreword to “Eight Fingers and Eight Toes: Accepting Life’s Challenges,” I was truly honored and humbled. I had known Debbie for almost three decades, having met her shortly after my arrival at the University of Utah as a junior faculty member and just after the birth of Logan, the second of her two children with Miller syndrome. This condition, named for the author who first published a description of the syndrome (which is also referred to as postaxial acrofacial dysostosis), consists of birth defects of the face and limbs. It is a very rare disease, with only about 30 individuals documented in the entire medical literature.
At the time of Logan’s birth, one of my colleagues, a medical geneticist, was caring for Logan’s older sister, Heather. When Logan was admitted to Primary Children's Hospital as an infant, my colleague invited me to “take a look” at him. As a young and recently trained clinical geneticist, I reviewed the medical chart and appreciated the experience of seeing a child with this rare syndrome. Soon thereafter, I was introduced to Debbie, and I was immediately struck by her poise and composure. I wondered how she – as the mother of two children with this rare, poorly understood, and visibly obvious syndrome – was really coping. Over the ensuing 10 years I would run into Debbie at the Children’s Hospital with Heather, Logan, or both, as she orchestrated, in her words, the “maze” of specialists’ visits.
Years later Debbie met and married Lynn Jorde, another long-time associate of mine, and I recall the happiness I felt that two people whom I admired were together. Afterwards, at University social events, I would greet Debbie with Lynn and receive updates about Heather and Logan.
On one occasion I attended a talk that Debbie delivered to the first-year medical students, relating her story of raising two children with this medically overwhelming condition. Later, with my clinician’s tape recorder in place, I reflected on my impression of a mother who had accomplished so much: rearing her children with this rare disease as a single parent and coping well with its many complications.
Then I read “Eight Fingers and Eight Toes …”
Throughout the pages I was struck with how little we as physicians (and, I am certain, other health professionals) are in touch with the actual lives and day-to-day stories of our patients and their families. We provide “news” of the diagnosis, we obtain snapshots of progress at clinic visits, we talk among ourselves about “coping,” “acceptance,” “feelings,” maybe even “celebrating differences” -- all noble themes -- but do we really know? Perusing this narrative taught me that we do not. We intellectualize about so-called narrative medicine, we theorize about a parent’s (or “patient's”) coping mechanisms, we try to be in “their shoes,” we even strive to empathize--all with good intentions-- but we don’t really know: we only observe the surface layer.
Debbie Jorde has created a masterful piece that exemplifies what is now an emerging genre: parents telling the story of their children and family, not as an anthropologist investigating a medical culture or as a counseling student performing a qualitative study, but rather through their own unique lens. In “Eight Finger and Toes: Accepting Life’s Challenges,” we witness and experience the true-to-life account of how one deals with seemingly endless challenges: the news of the birth of an infant whose condition is highly visible but poorly understood, the chronic medical problems requiring many surgeries and regular visits to multiple specialists, and the existential dilemma--the assault on the meaning and essence of parenthood--of the condition’s genetic nature. And while these are the centerpieces of the story, the edges of the account--the outer rim of its circle--include divorce, single motherhood, an eating disorder, a chronic lung disorder in Heather and Logan (that mimicked cystic fibrosis and is not even a typical component of Miller syndrome), depression, and autism spectrum disorder. From this emerges resilience, self-doubt, inspiration, pain, authenticity, trials, self-esteem, differences, creativity, wisdom, and real quality in life: not simply “accepting” life’s challenges but embracing them.
The story “Eight Fingers and Eight Toes…” has not concluded; life proceeds for Debbie, Heather and Logan. We read the story, are touched much of the time, inspired most of the time, ponder the events all of the time, but meanwhile “life’s challenges” continue while we are reading these words.
The story's postscript and our understanding of Miller syndrome was enriched recently by the identification of the gene that, when mutated, causes the syndrome. Researchers at the University of Washington, the University of Utah, and other institutions published articles characterizing the gene discovery in the prestigious scientific journals, Nature Genetics and Science, in 2010. One of the insights provided by the research, which brought some clarity to Heather, Logan and Debbie, was the discovery that they had changes in two very different genes: the recently discovered Miller syndrome gene and alterations of a completely separate gene for lung disease. This explained their unusual chronic lung disease, which is not a typical feature of Miller syndrome.
“Eight Fingers and Eight Toes …” should be read by all who care for persons with medically complex and rare conditions. While it covers many themes, the book’s most stirring message is captured in Debbie’s own words in Chapter 12: “They have disabilities, but they are not their disabilities.”
John C. Carey, MD, MPH
Professor and Vice-Chair,
Dept of Pediatrics,
University of Utah School of Medicine
Photos
Heather, 2 weeks old, having her first bath at home,1977...........................................
Heather, 9 months old, 1977....................................................................................
Heather, 3 yrs old, with her brother Logan, 6 months old, 1980.....................................
Heather, 6 yrs old, with Logan, 3 yrs old, 1983....................................................................
Heather, 11 yrs old, with Logan, 8 yrs old, 1988.................................................................
Heather, 13 yrs old, with Logan, 10 yrs old, 1990................................................................
Heather, 17 yrs old, with Logan, 14 yrs old, with mother Debbie, 1994..............
Logan, 30 yrs old, painting a self portrait, 2010.....................................................
Heather, 33 yrs old, with Logan, 30 yrs old, with their mother Debbie, 2010..........
Heather, 33 yrs old, placing her forearm in her mother's palm, 2010................................
Heather, 33 yrs old, writing, 2010 ....................................................................................
Heather, 33 yrs old, typing on a computer keyboard, 2010...........................................
Chapter 1
My first baby was finally coming. The large round mirror mounted on the ceiling of the delivery room was positioned at a perfect angle to give me a good view of the birth. At this time ultrasounds were not routinely performed, so we had no idea of the baby’s gender or health. As my husband, Terry, sat next to me, I was filled with anticipation and curiosity, wondering whether we would have a boy or girl, imagining which of us the baby would resemble.
Outside, the Utah landscape was white and pristine with last night’s snow, but inside the hospital, the world was a sea of stainless steel and blue-green surgical scrubs. The room pulsed with a sense of excitement.
I looked at Terry, whose face revealed his own expectancy and wonder, and then back at the mirror.
As the baby pushed out of my body, I spotted the crown. The swatch of dark hair pleased me; it meant that my baby wasn’t bald. The presence or absence of hair seems a small matter now, but I was young and naive. Nothing in my experience as a twenty year old woman had prepared me for the reality of what was to come.
When the baby’s head emerged, the doctor used a small suctioning bulb to remove fluids from its nose and mouth. I wasn’t worried: This was a routine procedure performed on newborns. Besides, Dr. Kirk had been delivering babies for many years; he had delivered my brother, Cloyd, eighteen years earlier.
When he finished suctioning, he helped ease the baby’s shoulders out. Once freed, the rest of the body slid out, wet and slippery, and the doctor exclaimed, “You have a girl!”
Terry leaned closer and squeezed my hand. I wasn't worried that he might be disappointed not to have a boy. Throughout my pregnancy, whenever he was asked if he wanted a boy or a girl, he had responded that it didn’t matter as long as the baby had ten fingers and ten toes.
Suddenly my eyes caught sight of our baby’s body. She looked strange to me, nothing like I expected. Her skin was a pale blue and coated with a creamy substance. Was that normal? My eyes flashed to Terry, whose brown eyes revealed his own uncertainty. My eyes quickly darted to Dr. Kirk, but his focused expression revealed little. My attention finally settled back to my daughter.
She didn’t seem to be moving. I was frightened. Was she alive? Panic coursed through me. I had heard the term stillborn before, but had never imagined that something could go wrong with my baby. I was young and healthy. So was Terry. Nothing could be wrong with our child, could it?
As the doctor placed the baby on my abdomen, her body flopped like a rag doll. Was she breathing? I couldn’t tell. My heart pounded wildly inside my chest.
A pair of nurses moved nearby, but my attention was focused on my small motionless baby and the doctor who was busy clearing more fluids from her nose, mouth and throat. The word breathe was like a chant inside my head: Breathe, breathe, breathe.
Finally, after long and excruciating moments, gurgling sounds arose from her mouth. She made noises that sounded like muffled cries. Her arms and legs moved frantically, as if she had the sensation of falling. Yes! She was very much alive. I was relieved. My eyes moistened with tears.
And then I saw her arms; really saw her arms.
Something was wrong. These were not normal arms; not normal hands.
Now I was the one struggling to breathe.
My pulse raced as I tried to make sense of what I was seeing. Her small bluish arms looked abnormally short and were severely bent at the wrists. Her hands and fingers looked really small--too small even for a newborn.
Just as quickly as my eyes absorbed the images, my mind worked to deny them. This wasn’t supposed to happen, not to us. My mind raced. Her arms were fine. She had simply been cramped inside the birth canal, she would look differently in a few hours; she just needed a little time in a less confined space. What else could explain her odd appearance? Nothing was wrong with my baby. She was normal. She had to be. I had to make my denial real. I whispered out loud, “No, her arms aren’t bent,”
I blinked to clear my vision, but that did nothing to correct the distorted arms on my baby’s body. A lump was forming in my throat. I could feel the muscles in my face strain from the fear and worry that consumed me. My voice was like a prayer inside my mind: “Oh please, let her arms be all right. This can’t be happening. This isn’t real. I need to know that what I’m seeing isn’t the truth.”
And then I heard Terry’s voice. “Something’s wrong with her arms,” he said. The certainty in his voice hit me like a fist.
At that moment, I knew that what I thought I was seeing was true. Those words reverberated inside my head: Something’s wrong with her arms.
“Is everything else all right? I mean, besides her arms?” I asked. I barely managed to form the words, but I needed some kind of reassurance, some good news.
Dr. Kirk, who was in his sixties and had undoubtedly comforted other new mothers in difficult situations, placed his hand gently on my shoulder. The expression on his lined, porous face softened as he spoke. “Well, Debbie, this isn’t the kind of baby I anticipated for you.”
My heart sank. This wasn’t the kind of baby I had anticipated either.
Chapter 2
Our baby had eight fingers and eight toes. Not ten. Eight.
As I gazed at her deformed arms and hands, all I knew was that I wanted to leave the delivery room and pretend that I hadn’t given birth, not to her, not to a baby like this. I wanted to start all over. I told myself that I would just go home and get pregnant again.
I would have a different baby. I didn’t want this one.
After the birth, Dr. Kirk took the baby to another area to examine her. A nurse wheeled me into the recovery room and took care of me, cleansing my body and dressing me in a fresh gown.
Terry had left my side briefly to telephone his parents, but returned a short time later. As he sat next to me, I stared at the ceiling and wondered what to say, what to do. I was afraid to put my feelings into words. I didn’t know how Terry would respond if I admitted the truth. How would he react if I said out loud that I didn’t want the baby? Would he be hurt? Angry? I wasn’t sure. This was his child, too. I studied his face for clues and saw the same stunned and confused expression I’d seen in the delivery room when he’d first noticed her arms.
Finally, I found the courage to say what I was feeling. “I don’t think I want this baby.”
“I don’t either,” he replied, his voice sounding tense. “What are we going to do?”
I didn’t have an answer, at least not a practical one. I wanted to get dressed and leave the hospital. I wanted to pretend that this had only been a bad dream. I knew we couldn’t just walk away, but I wanted to go far away from this hospital.
None of this was supposed to be happening. It had all started out so differently.
Approximately four months before the wedding, I had been late for my monthly cycle. That coupled with recent bouts of nausea prompted fears that I might be pregnant. I couldn’t get my mind off of the changes that were happening to my body. I kept trying to deny the evidence because I didn’t want to be pregnant, not yet. That only happened to other girls, not to me. I continued to look and hope for physical signs that my suspicions were wrong, and every day I was disappointed.
Finally, six or seven weeks later, I had to know the truth. I had made an appointment with a doctor to have the necessary tests done to find out if my suspicions were correct. I was so scared. I timidly walked into the doctor’s office and checked in. I felt like I didn’t belong there. I sat down and looked around the room at all the pregnant women. I couldn’t believe I was there. I opened a magazine, only to shut it again. I got up and paced around the small, plain office and then sat down again. At last, the nurse called my name. My heart jumped as I rose and walked to the office.
The nurse drew my blood and excused me to the waiting area to wait for the results. I looked at the clock; the black hands seemed frozen, as if time had stopped. How long would I have to wait? A woman seated nearby cradled her bulging abdomen. I kept looking for magazines to read to take my mind off what was happening and why I was there, but all the magazines had something to do with pregnancy or motherhood. I wanted to run. Would this ever end? The nurse called my name again and I walked to the desk. My knees trembled.
“The test is positive. You are pregnant,” the nurse said, her voice as flat and steady as rain.
I scheduled a future appointment and left the doctor’s office in a daze. Overhead the sun broke through dismal clouds.
As I drove away from the narrow brown building, I considered the life growing inside me. “Are you really in there?” I asked and patted my abdomen. I was afraid and filled with disbelief, but at the same time, I felt the first twinges of maternal love. When I thought about telling Terry the news, I wondered what I was going to say. I wondered even more about how he might react to the news. Neither of us had counted on this.
I fought the urge to call him. Instead, I waited until later in the evening when we were alone. “I went to the doctor today and found out that I’m pregnant.”
There, I had said it.
Silence.
“Well? What do you think?”
“What is there to think?” he said, and shrugged his shoulders.
Neither of us seemed to know what to say. I had the whole day to begin getting used to our new reality, but the news was fresh for him, and he seemed dazed, as I had been earlier.
“Well, I’m glad that we already set our wedding date, so people can’t say that we had to get married.” I was worried about what people would think of me. “Let’s not tell anyone until after the wedding.”
We kept our secret. After our wedding, I continued working at the hair salon as a licensed cosmetologist. Eventually, I started growing out of my clothes. The time came to announce that we were expecting. I cut words out of the newspaper and pasted them in a card to make the sentence: “We are going to have a baby.” I passed the letter around at a family gathering. Everyone was very happy for us.
How did our beautiful dream become a nightmare? How could a baby like this belong to Terry and me?
A short time after the delivery, an orderly wheeled me into a room in the maternity ward. Overhead the florescent lights seemed harsh and unkind. I felt like a stranger in my own life. None of this was supposed to happen to us.
When we arrived in the small room, Terry’s parents were standing there, waiting for us. They both smiled, trying their best to be optimistic and reassuring. They hugged Terry and leaned to kiss me on the cheek.
The sky in the window was dark and starless. I could have stared into the void for hours. I didn’t feel like talking.
After a few awkward moments when none of us seemed to know what to say, Terry’s father finally spoke. “You have to remember there’s a perfect spirit inside that little body,” he said. His wife nodded and took the seat Terry offered.
Terry’s parents were devout Mormons, and I knew those words were intended to comfort and reassure me. Instead I felt ashamed. I, too, had been raised a Mormon, but I rarely attended church anymore and believed I had disappointed everyone by becoming pregnant before marriage. I also knew what our church taught about children with disabilities, and how the parents of such children were chosen by God. I knew, too, that a mother’s love was supposed to be unconditional. What kind of mother doesn’t want her own child?
I tried to force a smile, but even that was too much effort. I could not accept that the baby in the delivery room belonged to me. I didn’t want to hear about her perfect soul. I didn’t want to hear about her at all.
Chapter 3
Soon after Terry’s family left, my mother and my older sister, Kathy, walked into my room. Mom carried a beautiful bouquet of flowers and handed them to me. “These flowers reminded me of a Heather,” she said.
“Oh yeah, I was going to name the baby Heather if it was a girl,” I murmured under my breath. I wasn’t even sure that I wanted to name her, because in some way, to give her a name was to claim her. And yet, the flowers somehow made it easier. Of course we would call her Heather.
My sister, Kathy, sobbed into a tissue as she sat next to my bed. “This shouldn’t have happened to you. It should have happened to me. You should have had Brandon,” she said. Brandon was Kathy’s eighteen-month-old son, a beautiful and healthy little boy. (We would sadly learn later that Brandon had cystic fibrosis and would die prematurely.) As a teenager, Kathy was rebellious and adventurous; she constantly challenged authority and broke the rules. By contrast, I was always trying to be “perfect.” I did what I was told, studied hard, got good grades, always did my chores at home and rarely got in trouble. I went to church and tried to do the things I was taught were right. Kathy may have felt that I didn’t deserve a baby with problems.
Mom and Kathy had been to the nursery to see Heather before coming to see me. They said the doctor told them she had a cleft palate. I was disappointed to hear that news.
While we were talking, the pediatrician came in. He was a tall man, mid-forties, with a receding hairline and glasses. After a brief introduction, he explained that he had examined my daughter. He told me about her cleft palate and explained that the baby couldn’t get any suction to nurse or suck on a bottle because she had a hole in the roof of her mouth. I had planned to nurse my baby. I felt numb and overloaded.
The doctor went on to say something was different about her eyes too. “Her lower eyelids slope downward, as if there isn’t enough skin for lower eyelids but I’m not sure because they are still swollen from the birth.” He paused, and then added something he seemed to find positive. “At least everything is symmetrical.”
“Symmetrical? What is that?”
“Everything is the same on both sides. Her ears are small and cup-shaped, her forearms are both short, both of her wrists bend down ninety degrees putting her hands below her wrists with her palms facing each other. Both hands are smaller than normal and missing the little finger. Her six other fingers are unable to straighten. Her feet are the same on both sides; turning in slightly and missing the little toe.”
“Is symmetrical the best thing you can tell me about my baby? Is she able to hear?” “Well, her ear canals are so small we can’t see ear drums. We’ll have to wait and see.”
“What about her vision?”
“Her eyes are still adjusting. We don’t have any reason to think that she can’t, but again we’ll have to wait and see.”
When he had answered my questions and given me all the information that he could, he left. I leaned my head against the pillow and felt overwhelmed by all the problems we faced. This was more than we had bargained for; how could these things be happening to us?
Soon all our family members had gone, and Terry and I were left alone. We didn’t discuss our feelings about not wanting the baby. We were numb with exhaustion, fear and disbelief. Like any young couple, we had small disagreements in the past, but there had never been this long, awkward silence between us. Until now.
Terry went home and I was left alone for the first time since giving birth. A few doors down, our newborn daughter spent her first night in the care of nurses. Perhaps the only saving grace was that she was too young to know that her parents did not want her.
That was one of the hardest nights of my life.
Sleep didn’t come easily, even though I was exhausted. My eyes finally closed and I drifted into a deep sleep. When my eyes opened, I felt an intense, deep sense of fear, unhappiness and gloom. It was as if I had been awakened by a nightmare, only this nightmare was real. I had a baby who wasn’t normal. I couldn’t make the problems go away and I didn’t know what to do. I’d never experienced such emotional pain. I sobbed uncontrollably. “I can’t believe this is happening. I don’t want this to be real. Please God, make this go away.”
I cried myself back to sleep, only to awaken over and over throughout the night, repeating the same experience. I felt so helpless, so out of control. There was nothing I could do to change what was happening. I couldn’t make it go away and I didn’t know how to accept it.
When I awoke early the next morning, I wasn’t ready to deal with the reality that I was facing. I asked the nurse to stop all my phone calls. I didn’t want to talk to anyone. I couldn’t bear to hear people say, “I’m so sorry.” Hearing those words would force me to admit what was happening was real and I couldn’t. Not yet. I just wanted to be left alone.
Terry came to the hospital that morning so he could be with me. Over and over we both said, “I can’t believe this is happening. What are we going to do?” We didn’t have any answers. We were curious about the baby, even though we were in denial and disbelief, so we called the nursery and asked the nurse to bring Heather to our room. The nurse left her with us so we could be alone with her. We sat beside her little clear box, which served as a bassinet, and just looked at her. I noticed the little pink bow in her hair. She was asleep, eyes still swollen closed from birth. The pink undershirt she was wearing had long sleeves and her arms were too short to fill them. The sleeves just hung off her arms, the way a shirt might fit a scarecrow.
“She’s so little. I can’t believe she’s our baby,” I said.
Terry nodded, but said nothing. Neither of us touched her.
Our eyes roamed over her little face and her body. She was sleeping, and we just looked at her, curiously studying every feature we laid our eyes on. When she was asleep, we couldn’t see the downward sloping eyelids, but we noticed that her chin receded more than normal, and we could see her small, cup-shaped ears. Her wrists were so bent that her hands looked strange where they were and her little fingers wouldn’t straighten out making them look like a garden claw. Soon the pain of our new reality was unbearable, and we’d had all we could handle. We called the nurse and asked her to come get Heather. We didn’t know what to think, because we were numb from all the emotions. Out of habit and not knowing what else to do, Terry decided to go to work.
I cried all morning long. I thought I would never stop. I didn’t want to see the baby, and I didn’t want to talk to anyone. I just wanted the whole experience to end. I kept thinking, “I can’t stand this.”
I heard a knock at my door. A nurse walked into my room. “Do you mind if I come in and talk with you a minute?” she asked.
I didn’t feel like talking, but I didn’t have the energy to come up with a good excuse. I smoothed the front of my hospital gown and nodded for her to come in.
She smiled, introduced herself, and sat on the chair next to my bed. She was dressed in white and had kind gentle eyes. She knew about our baby and wanted to share her experience as the mother of a child with Down syndrome. I knew she wanted to help me, but I couldn’t relate to her, and her story didn’t mean anything to me personally. I just wanted her to go away. I felt numb as she spoke. I wasn’t ready to face the reality of being the mother of a disabled child, and nothing about her story brought me any comfort. Her intentions were good, but the timing was all wrong.
After she left, I wore myself out crying and thinking, and then I slept some more.
When I awakened, I couldn’t cry anymore. I started to feel curious about the baby again. Maybe maternal instincts were setting in; I didn’t have any other explanation for why I wanted to see her.
I climbed out of bed, put on my robe and slippers, and walked to the nursery. I stood outside the window looking in at all the bassinets. Every bassinet was empty, except for one, the one holding my baby. I knew what this meant: All the other babies were with their mothers. My heart ached for that little baby. I thought, “That baby is all alone because her mother doesn’t want her, and I’m her mother!”
Tears filled my eyes and began to stream down my cheeks. I was on the edge of losing control of my emotions. Suddenly, I felt a warm arm wrap gently around my waist, and a nurse spoke. “Do you want to hold her?” she asked.
I nodded through my tears and allowed her to take my hand. She lead me into a small, windowless room where she helped me put on a sanitary gown and scrub my hands.
I felt like a robot programmed to do what I was told. I followed the nurse’s directions because I didn’t know what to do on my own. When I finished scrubbing, we went into a little room in the back of the nursery. The nurse disappeared for a few minutes and I was left alone, feeling afraid and uncertain. Part of me wanted to get up and leave the area before she returned, but somehow I managed to stay put.
When the nurse returned, Heather was lying in her arms, wrapped in a small pink blanket like the ones I had seen when I first arrived at the hospital. Another nurse accompanied her. She asked me if I wanted to watch them feed Heather. I nodded passively, not knowing what to expect but not knowing what else to do. She repeated the same information that the doctor had given me right after Heather’s birth, that with a cleft palate the baby can’t get enough suction to suck the nipple on a bottle or a breast, so they had to use a special feeder called a Breck-feeder. It looked a bit like a turkey baster and was composed of a large glass syringe, about two inches in diameter, with a rubber ball on one end and a quarter inch tube, approximately four inches in length, on the other end.
One nurse propped Heather into a seated position, while the other nurse inserted the tube into Heather’s mouth, far enough to direct the formula down her throat without gagging her. Then she lightly squeezed the ball to squirt the formula through the Breck-feeder. As the liquid was released, it began to stream out of Heather’s nose and mouth. She was gulping uncomfortably, as if she might be drowning. Her strange looking arms were flailing. They looked as if the hands had been cut off at the wrist and then glued back on in the wrong place under the wrist pointing down to the floor. I felt as if my heart would break. Everything I was seeing made me feel terribly sad. Heather looked so helpless. Few things are more difficult to watch than a newborn struggling to feed or breathe, especially when that newborn is your own.
When the nurses finished feeding and cleaning Heather’s milky face and chest, one of them asked me if I wanted to hold her. I didn’t know what I wanted, but I didn’t feel like I could, or should, say no. “Yeah, I guess,” I said.
Before I had the chance to change my mind, she gently placed Heather in my arms. Both nurses left the room. I was alone with my new baby. As I rocked Heather, I studied everything about her. She was so small. I stroked her dark hair, which was the color of my own. I gently touched her face, lightly grazing her closed eyelids with my finger tips. I observed her downward sloping lower eyelids. I could see the red tissue inside the lower lid as the doctor had described to me soon after her birth. I ran my finger along the edge of her small cup-shaped ears, and moved my hand downward to caress her little forearms. In a soft whisper, I quietly counted her fingers and toes. I placed my thumb in her little hand. Her three bent fingers curved around my thumb. I gently caressed her fingers to see if I could straighten them. They didn’t straighten at all; as if they had no knuckle but were formed bent. My tears fell on her arm as I cried, wondering how this little girl would be able to do anything in this world with arms and hands like this. I could hardly believe that this was the baby that had been inside my body for ten months; the one I felt kicking and moving and the same one I talked to from the moment I found out I was pregnant. Even though she had all these problems, I was in awe, thinking that I helped create this little human being. I was marveling at the miracle of creating a human life.
The pediatrician came and offered his assessment. “It’s possible that this condition could be genetic.” He went on to explain about recessive and dominant genes. He was suggesting that perhaps this condition could occur again with another pregnancy. I couldn’t believe what he was saying.
All I knew was that I didn’t want this to happen again. I reacted instinctively by saying, “I’m getting fixed. I’m not having any more babies if this can happen again.”
He didn’t have any conclusive answers for me and suggested that I talk with a geneticist. I still couldn’t believe that this was all real, or that it was all happening to us.
Later that day, I decided I was ready to have the baby in my room. I nervously dialed the nursery. “Could someone bring Heather Madsen to me?”
Just as they wheeled Heather’s bed into my room, Terry’s mother walked in. Hospital policy prohibited newborns from being around anyone except the mother and father, so the nurse took Heather back to the nursery. I felt disappointed. I still wasn’t sure I wanted this baby, so my disappointment surprised me.
After visiting with Terry’s mother, I received another guest: my dad. He kissed my cheek and sat in the chair beside my bed. As I looked at him, I thought about the baby’s dark hair and how her coloring was like my father’s, and like mine.
He didn’t know anything about how I felt when Heather was born. No one knew about my feelings of not wanting the baby except Terry, so I was surprised when he said, “You don’t have to worry about anything. I’ve made some arrangements to have the baby cared for if you don’t want her.”
My emotions were still unsettled. On some level, I felt grateful that he wanted to take care of this problem for me. Another part of me was disturbed by the offer.
I knew my father’s offer was real. He had always tried to make things right for me. When I was in the fifth grade, my father made my dream of having a horse come true. He knew I loved horses because I collected all kinds of plastic horses and read novels about horses and their owners. He gave us an Appaloosa mare and colt for Christmas. Another gift from my dad was braces for my teeth. I really needed them because I had sucked my thumb for thirteen years, and my front teeth protruded. Besides being self-conscious about my height -- at six feet tall I towered over other girls -- I was very self-conscious about my overbite, so when I smiled, I tried to keep my teeth covered with my lips. I was so grateful to have straight teeth when my braces were removed two years later.
All I had to say was thank you, and my father would see to it that I did not have to mother the deformed child I had given birth to. But something had begun to shift inside me, and my father’s offer forced me to make a choice. I could either accept this baby as she was and do my best to care for her, or I could walk away, relinquishing her care to strangers.
“It’s all right, Dad, I want to keep her,” I said, and my eyes filled with tears. I wasn’t quite sure how I would be a mother to this baby, but I wanted to try. I could not abandon her. She was mine.
“Do you want to go to the nursery to see her?” I asked.
We walked down to the nursery together and looked into the viewing window. A nurse held Heather up to the window. She was wrapped tightly in a pink blanket so we couldn’t see her arms and hands. She looked beautiful to me. Her dark hair was combed up into a curl, and a pink bow placed there. Her skin had the olive coloring that my dad’s and mine had. She tried to open her eyes a little bit. I smiled. It was strange the way time was helping me adjust to my new reality, and at that moment I felt like a proud mother, full of love for her first child.
After I went back to my room and said goodbye to my father, I changed into a clean gown and brushed my teeth. I stood at the bathroom mirror and looked at my face. My eyes were red and swollen from too little sleep and too many tears. This strained and exhausted face belonged to someone else. I was not this person. I had watched my mother’s face grow weary over the years, as if all her battles had taken their toll on the very cells that made up her skin. I didn’t want to become someone weary of her own life. I had been a mother for all of one day, but already the strain was visible. Any of the radiance I had shown during pregnancy had somehow evaporated into thin air. I flipped off the light and stepped back into my room.
I missed Terry and wanted him here with me. I climbed into the hospital bed and rested my head against the pillow. As the moments ticked by, I thought about our baby in the nursery. I wanted to hold her again.
When Terry arrived, I suggested having Heather brought to us, but he shook his head. “I’m not ready yet,” he said.
I respected his feelings and assumed that he needed more time to get used to everything that was happening. He’d been at work all day and probably had very little time alone during the day to sort through his feelings. I had spent many hours alone thinking of little else.
We ate dinner in my room, a special meal prepared by the hospital to mark the birth of our child. The cafeteria staff had grilled steaks for us and served them with baked potatoes and steamed broccoli. They had also made a white cake and decorated it with a little pink plastic baby to celebrate the arrival of our new baby girl. The festive cake was a sad reminder of all the things that were wrong with our daughter.
While we were eating, there was a knock at the door, and a team of doctors walked into the room. I lost count of them, but remember feeling as if a herd of white coats had overtaken the small space. They informed us that Heather had taken a turn for the worse.
“Your baby’s in trouble,” one doctor explained. A stethoscope hung around his neck; another jutted from his coat pocket. “She has a heart murmur and she’s aspirating. She also has jaundice.”
My breath caught in my throat. I wondered if her jaundice explained the olive coloring of her skin.
“I was about to sit down and have my dinner at home when my phone rang,” the specialist continued. “It was Heather’s doctor, informing me about all the problems she was having. For a moment I wondered why the doctor bothered to call me because it sounded like this baby had so many problems it seemed obvious that she probably wouldn’t live. But I just couldn’t eat my dinner knowing I hadn’t tried.” His voice and manner were kind as he explained that he was going to have Heather transferred to Primary Children’s Hospital in Salt Lake City, where they would perform a procedure called a heart catheter. The results would help determine what was causing the murmur. He asked us to sign the release forms giving them permission to do the surgery.
He also asked us to sign a form giving them permission to do an autopsy.
Terry and I looked at each other, but didn’t speak. Autopsy? The word was like a door slamming inside a quiet cathedral.
I felt numb as I signed the necessary forms. The doctor said he would call when he finished the procedure. He told us we could go see her before they transported her.
Together Terry and I walked to the nursery. We had to scrub our hands and put on sanitary gowns before we could go in. As we entered, I immediately saw Heather under bright lights, in an open hospital crib, hooked up to several plugs and wires. They were attached to her stomach and heart, and her skin color looked a sickly yellow. Her chest and stomach heaved rapidly as she fought for each breath.
As the blood rushed from my face, I turned away and almost fainted. I had expected to see the beautiful little baby girl shown to my father and me through the window earlier that day. Terry and the nurse had to hold me on my feet until we could find a chair. I wasn’t prepared for this.
“I’m so sorry, I should have warned you,” the nurse said.
I sat there, numb and shaken. When I was able to stand, Terry and I slowly walked back to my room. Neither of us could find the words to express what we felt. We stared ahead like zombies, unable to process the events unfolding before us.
We didn’t know how long the operation was going to take. Terry was restless and didn’t know what to do with himself, and I didn’t know what I wanted him to do. He had a basketball game scheduled that night, and he robotically felt compelled to go play. I felt empty and paralyzed, so I told him he might as well go. As I said it, I felt hollow, like my mouth was just saying the words. I was drained and exhausted. He kissed me goodbye and walked out of the room.
Almost immediately, he stepped back inside the room and sat next to me. “I can’t believe I was just going to go play basketball and leave you here alone waiting for a phone call that will tell us if our baby is going to live or die,” he said.
While we waited, we discussed the probability of Heather’s dying. After all, they wouldn’t have had us sign papers giving permission for an autopsy if she were going to live. We started to adjust to the idea that she would die. We thought maybe it would be for the best. We didn’t know if her life would be worth living, and we didn’t know how to take care of her.
I started to feel a sense of relief, but it was bittersweet. I felt sad about her dying before friends and family got to see her. She looked so beautiful to me that afternoon, and I worried that when people heard about all her problems, they would picture a monster. I didn’t like that idea. But I didn’t feel so worried about the future now, because this would probably be over soon. I believed that Terry felt the same mixture of sorrow and relief.
We waited for hours for a telephone call that night, but instead of a phone call, the doctor came to our room in person. His broad smile told me that our baby was still alive. I wasn’t sure if I felt relieved or disappointed.
“If I had known her heart looked this good I wouldn’t have done anything,” he said. He sat down and drew a picture of Heather’s heart as he explained that a valve that usually closed at birth hadn’t closed yet and was causing the murmur. He said usually the valve closes by itself within the first year.
For a split second, I felt genuine disappointment as the fear welled up inside me again. I had already accepted the possibility that Heather wouldn’t suffer in this life, and I believed that was for the best. Now I had to readjust my thinking again. I felt like a ping-pong ball being batted back and forth between two equally difficult realties.
After everyone was gone, I slept fitfully and cried all through the night.
I didn’t know what was going to happen to Heather or my life. I didn’t know how Terry and I would manage a baby who needed so much.
During the night, a woman who had just given birth was brought into my room. Until then, I had been fortunate to have the room to myself.
A voice woke me later that night. I forced my eyes open and saw a nurse. She held a baby in her arms. “I have your baby for you,” she said.
I was startled and confused, and then overwhelmed. The baby belonged to the woman in the next bed. This was the way it was supposed to be, but my experience had been nothing like that. “That’s not my baby, my baby’s at Primary Children’s Hospital, and I don’t know if she will live or die,” I said, my voice breaking as I tried to explain.
The nurse gasped and apologized. She gave the baby to its mother and paused beside my bed to ask how my baby was doing.
“I don’t really know. She has so many problems, and she’s so little.” My eyes moistened with tears. I had cried more in the last day than at any time in my life, and still there were more tears.
Before she left, the nurse apologized again. “I hope your baby is all right.”
“Me, too,” I said, although I was too numb and overwhelmed to know what I hoped.
I didn’t feel it necessary to stay in the hospital the three days that was typical after giving birth. I wanted to see Heather. I got dressed, packed my bags and waited to be released.
Throughout my pregnancy, I pictured my baby dressed in the little yellow and white sweater, booties and cap I crocheted while she kicked inside me, and wrapped in the yellow gingham blanket I tied with my friends at my baby shower for this special day. As I imagined Terry carrying our new baby out to the car to take it home to the new nursery, I was consumed with sadness and disappointment. The nurse placed some tissues in my hand to wipe my tears. I was leaving the hospital with empty arms.
The nurses made me ride in a wheelchair to the car. I didn’t want to, but they insisted. As I was being wheeled down the hall, I kept thinking about the way this day was supposed to be. Instead of carrying my baby, I held the flowers my mother gave me in one hand and a tissue in the other. Terry walked ahead to pull up the car near the exit.
I tried to shake my feelings of despair by focusing on one thing: getting to Primary Children’s Hospital to see Heather.
When Terry and I arrived at PCH, we were directed to the intensive care unit. A thin nurse with auburn hair guided us to the section where Heather was being cared for in a clear, plastic box called an isolette. The nurse explained that our baby was receiving oxygen and warmth.
Terry and I stared at Heather inside her little cubicle. She looked so small and fragile, lying on her stomach with her head turned toward us. She was asleep but without lower eyelids to close her eyes, they looked open. Her short, little arms were lying by her sides, bent at the elbow exposing her strange bent wrist and small hand. I felt a surge of love for her. She looked so helpless and alone, and I wanted to hold and protect her. For the moment, all we could do was look at her.
Another newborn slept in the isolette next to Heather. This baby had a completely healthy torso, neck and head, but didn’t have any arms or legs. Hands extended from the shoulders where arms should have been and feet extended from the pelvis where legs belonged. The parents seemed to be healthy like Terry and me, and this was their first baby. For the first time, I felt grateful for the little arms that Heather had; at least she had arms, and she had legs, too. That was my first experience appreciating the problems I faced, because I could see that there would always be someone whose situation was more difficult.
My first night at home without a baby was painful. Terry tried to cheer me up, but when I flipped on the light in the nursery, I was heartbroken. My gaze moved over the white canopy crib and the yellow gingham quilt, the rocking chair with matching yellow gingham cushions, the window draped with matching curtains, all sewn with my own hands during the long pregnancy, then across the room to the changing table that held a stack of small diapers and talcum powder. I still didn’t know if I would have a baby at all. The feelings of emptiness were unbearable.
As I lay in bed that night, I looked down at my flat stomach where my baby had been. I felt empty and alone. The baby had been with me for the past ten months and now it was gone. I sobbed uncontrollably. I couldn’t understand why this happened. I felt helpless.
Terry and I gravitated to traditional roles while Heather was a newborn and still hospitalized. I rose early, showered and dressed and we drove to the hospital in separate cars so I could spend my day with Heather. Terry spent some time with us and then headed to work. In the evening, when Terry and I talked, most of our conversations focused on our disbelief that this was happening to us. We were constantly worried about whether our daughter would survive.
Seeing my baby, spending the day at the hospital where she was, and learning all that I could about how to take care of her gave me some kind of sense of direction. It was nothing like what I had pictured, but it was a direction and purpose.
Because Heather was in ICU, there weren’t many visitors. I quickly got used to spending the day there alone. It wasn’t my nature to seek support and comfort from other people. As I had done most of my life, I accepted what was happening and did what was required to cope. Whenever difficult emotions surfaced, it was as if I had an internal switch that I could flip off to avoid those feelings. I could shut down at will, and I did. While Terry went to work, I spent every day for two weeks in the intensive care unit with Heather. I held her whenever the nurses would let me. I watched them feed her and take care of her. I grew impatient because I wanted to take her home and be her mother. I didn’t care anymore that she wasn’t a perfect baby. She was mine. I loved her and wanted to take care of her.
Terry felt nervous about my attachment because we still didn’t know if Heather was going to live. “I don’t want to see you get hurt. We still don’t know how this will turn out,” he cautioned me.
The doctor was concerned because Heather wasn’t getting enough to eat. Her cleft palate made it difficult to get enough nutrition. The formula just flowed out of her nose and mouth; very little went into her stomach. The doctor didn’t know the prognosis on Heather’s life expectancy, and they still didn’t know what syndrome she had. The uncertainty was hard to accept.
I had planned to nurse, but Heather’s cleft palate made it impossible. I felt very sad and disappointed that I couldn’t nurse, and when the doctor gave me medication that would dry up my milk, I was very upset. The milk came in anyway, so I rented a breast pump and took milk to the hospital for Heather. Pumping my milk wasn’t very easy; after a couple of weeks I decided it wasn’t working out. The doctor said the baby would be fine without the mother’s milk and not to worry about it.