Kara Mia
the story of sudden loss and slow recovery in a teenager with Long QT syndrome
By Maryann Anglim & Walter Allan, M.D.
Published by Seahorse Press at Smashwords
Copyright © 2012 by Maryann Anglim and Walter Allan, M.D.
Smashwords Edition, License Notes
Thank you for downloading this free ebook. You are welcome to share it with your friends. This book may be reproduced, copied and distributed for non-commercial purposes, provided the book remains in its complete original form.
This book is out-of-print but may be available in print form.
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Grateful acknowledgment is made to the following for permission to reprint previously published material: Excerpt from bird by bird by Anne Lamott, copyright © 1994 by Anne Lamott, reprinted by permission of the author. Excerpt from “Love Hurts" by writer Boudleaux Bryant © 1960 by Acuff-Rose Publications, Inc. Renewed 1988 by House of Bryant Publications, P.O. Box 570, Gatlinburg, TN, USA, 37738. Excerpt from "Because You Loved Me," words and music by Diane Warren © 1996 Realsongs and Touchstone Pictures Music & Songs, Inc. All rights reserved. Used by permission. Warner Bros. Publications U.S. Inc., Miami, FL, 33014. Excerpt from "Fly" J.J. Goldman/Phil Gladston, Les Editions JRG/CRB Music Publishing (SOCAN) administered by Sony Music Publishing Canada. Copyright © 1996-All rights reserved on behalf of Sony Music Publishing Canada/CRB Music Publishing adm. by Sony/ATV Music Publishing LLC (ASCAP), 8 Music Sq. W., Nashville, TN, USA, 37203. All rights reserved. Used by permission.
Some of the names of persons mentioned in this book have been changed to protect their privacy.
Cover art by Janice Wright.
Table of Contents
PART I: SUDDEN LOSS AND SLOW RECOVERY
Chapter 1 - Letters from the Heart: April 10, 1995
Chapter 2 -Shocks at the High School Track
Chapter 3 - April 7, 1995
Chapter 4 - With Grace and Maturity
Chapter 5 - A Doctor's Impressions
Chapter 6 -A Mother's Impressions
Chapter 7 - Like Patterns for a Quilt
Chapter 8 - A Sister's Impressions
Chapter 9 - Questions with No Answers
Chapter 10 - Kara's Medical History
Chapter 11 - A Roller Coaster Ride
Chapter 12 Long QT Syndrome
Chapter 13 - Kara's MRI Scan
Chapter 14 - Decisions
Chapter 15 - Acronyms
Chapter 16 - Kara's Defibrillator
Chapter 17 - The Bad, Bad Bed
Chapter 18 - Managed Care?
Chapter 19 - Parsimonious
Chapter 20 - Eleanor Roosevelt and Me
Chapter 21 - Lobbying
Chapter 22 - Guerin
Chapter 23 - Thomas
Chapter 24 - Et in Arcadia Ego
Chapter 25 - Letters to Colleges
Chapter 26 - Changes
Chapter 27 - A Thousand Cranes
Chapter 28 - Getting Dizzy
Chapter 29 - What Does it Mean to Have a Gene?
Chapter 30 - "So How is Kara Doing, Dr. Allan?"
Chapter 31 - Patty and Maryann
Chapter 32 - The Sun and the Wind
Chapter Last - Dear Mom...Dear Kara
Dedication
The task of choosing to whom to dedicate this book was a daunting one. There were many deserving candidates. Should we dedicate it to Alan Douglass and David Hudson and their paramedic team? Those were the men who saved Kara’s life on the track on April 7, 1995. Should we dedicate it to Dr. Rebecca Chagrasulis and the Bath Midcoast Hospital emergency room? Those were the people who sustained Kara’s vital signs as she tottered between life and death that day. Should we dedicate it to the medical staff and employees of Maine Medical Center? Those were the people who lead Kara back to health as she recovered under their special guidance.
Should we dedicate Kara Mia to our friends and neighbors? These were the people who cleaned our house, fed us for four months, mowed our lawn and walked the dog. Should we dedicate it to my co- workers in the operating room? These were the people who gave me all the easy cases until my feet were firmly planted on the ground once again. Should we dedicate it to certain special friends who have been more angelic than human? These were the people who helped me give Kara her first bed bath (that would be you, Linda) or who literally held my hand through the first surgical case I did on my first day back to work (that would be you, John) or who gave Kara her weekly shampoo and manicure (that would be you, Paula) or despite an ankle broken while rescuing puppies, unfailingly had Kara to her house every Tuesday (that would be you, Joanna). Should we dedicate the book to our technical support staff? These were the people who read and reread our manuscript and generously offered us their computer expertise.
Should we dedicate the book to my parents? They were the ones who heard the news of Kara’s collapse at 4:00 p.m. in Chicago and were in Maine by 9:00 p.m. that night. Should we dedicate this book to our respective children, Ken, who is in graduate school at the University of Chicago, and Guerin, who is a sophomore at Providence College? We are proud of both of them. Should we dedicate this book to our respective spouses, Ann and Tom? They have been more than tolerant of our writing process in their quiet, calm, patient and funny ways. They have always had faith in us, stood beside us and trusted the importance of this book to us.
Even though all of these people are deserving of a dedication, there is one person who transcends all of them and that person is Kara. So, Kara, we dedicate this book to you. This book is a testament to your smiling hard work and this bittersweet story of love and modern medicine. You have taught us that miracles do happen.
Acknowledgments
The authors would like to acknowledge the help that we received from Anne Lamott’s book bird by bird. Both of us kept that book near our computers as we wrote and her writing inspired us, got us unstuck, made us laugh, and taught us about life. It had the remarkable effect of eventually making us think we were writers. This particular passage is from the chapter “Someone to Read Your Drafts” and we found it to be particularly true as we solicited editorial assistance from our family and friends.
"...I am suggesting that there may be someone out there in the world...who will read your finished drafts and give you an honest critique, let you know what does and doesn’t work, give you some suggestions on things you might take out or things on which you need to elaborate, ways in which to make your piece stronger...I know what a painful feeling it is when you’ve been working on something forever, and it feels done, and you give your story to someone you hope will validate this and that person tells you it still needs more work. You have to, at this point, question your assessment of this person’s character and, ...decide whether or not you want them in your life at all. Mostly I think an appropriate first reaction is to think that you don’t. But in a while it may strike you as a small miracle that you have someone in your life, whose taste you admire, ...who will tell you the truth and help you stay on the straight and narrow, or find your way back to it if you are lost.”
So, thank you to Sue Poulin, Marilyn Collins, Lizzie Van Orden, Janet Van Orden, Lynn Baker, Ann Allan, Tom Anglim, Peter Goldfine, Doug Dransfield and Mary Alice Walter. Your critiques and whole-hearted support encouraged us to continue our writing and not stop until our story was told.
Thanks also to Doug Dransfield for the technological assistance and help with the computerized drawings. You added to the artistic and professional look of the book.
Janice Wright captured the essence of Kara’s story in her quilt design on the cover of Kara Mia. Thank you very much for all the love and hard work that went into it. We look forward to the day when the quilt design becomes a real quilt.
Thank you to Larry Gorton for the photographic assistance. Also thanks to Diane (Disey) Roussel, R.N. for taking the Christmas photos of Kara on Pediatrics.
Thank you to Joan MacCracken, M.D., author of The Sun, The Rain and The Insulin, who willingly shared her experiences and knowledge with us.
Thank you to Medtronic, Inc., not only for having the technologic ability to manufacture implantable cardiac defibrillators, but also for your financial support of our book. Thank you, also, to Jim Winner, our Medtronic representative, for his technical knowledge, for seeing Kara the day of her surgery, and the help with our book.
Thank you to Maine Medical Center for your financial support of Kara Mia and for the special brand of care that healed Kara and our family. The people of Maine are fortunate to have your skilled staff available to them.
Thank you to Dr. Michael Vincent for helping a pediatric neurologist and an operating room nurse learn about Long QT syndrome. Thank you for writing the foreword to our book. We join you in your hope of expanding the knowledge of Long QT syndrome.
Foreword
(for the first edition)
A hymn states, “When upon life’s billows you are tempest tossed, when you are discouraged thinking all is lost, count your many blessings, name them one by one, and it will surprise you what the Lord has done.” While Kara Mia is a tale of tragedy wrought by the Long QT syndrome, it is also a beautiful story of courage, strength, and faith, and the ability of the human spirit to rise above and grow from the challenges and hurdles which are placed into the lives of many of us.
Kara Mia’s story is common in the Long QT syndrome—a completely unexpected cardiac arrest or sudden death, or unexplained loss of consciousness (syncope), in an apparently healthy young person. Once thought to be rare, the syndrome is now recognized as a common cause of these events. The disorder is due to mutations in genes which control the electrical activity of the heart. Affected persons are predisposed to a sudden onset, very fast and abnormal heart rhythm, which causes the syncope, cardiac arrest, or sudden cardiac death. These events typically occur during the preteen to teenage years; they can occur as early as the first days or weeks of life and infrequently even as late as the fourth or fifth decade. Some patients never have any symptoms, but still can transmit the gene to their children, who may have such events. The characteristic sign of the syndrome is a prolonged QT interval on the electrocardiogram (ECG). When the QT is greatly prolonged, the diagnosis is simple. However, in some patients the QT is only borderline prolonged or even normal; in these cases the diagnosis can be difficult. To further complicate early diagnosis, ECGs are not routinely performed in children. Consequently, many patients with this condition go unrecognized until serious symptoms occur. All too often the first event is a cardiac arrest or sudden death.
Research is quite active. Recently, four genes which cause the syndrome have been identified, and others are suspected and being sought. The underlying mechanisms of this disease and the abnormal heart rhythm are being unraveled. The full spectrum of signs and symptoms is being clarified, and it is now evident that there is some diversity in the manifestations of the condition based on the specific gene involved. New treatments are being developed. Physician and public education is increasing. As the remaining genes are identified, genetic analysis will become the most accurate and preferred way to diagnose the condition and additional treatments will be possible. Yet, much remains to be done. Many physicians and most of the public are yet unaware of this silent killer, and misdiagnoses are common.
Often a silver lining exists in clouds of darkness. Thanks to Maryann Anglim and Dr. Walter Allan, such will be the case with Kara’s tragedy. Certainly, Kara Mia will uplift and strengthen those who must struggle with similar catastrophes. Further, the Long QT syndrome is a very treatable disorder, and the events can be prevented if the disease is recognized early and the proper treatment is instituted. Kara Mia will educate and inform and assist in the early and presymptomatic diagnosis and treatment of patients with the Long QT syndrome. Precious lives will be saved as a consequence of this effort.
G. Michael Vincent, M.D.
Chairman, Department of Medicine, LDS Hospital
Professor of Medicine, University of Utah
Salt Lake City, UT
Spring 1997
PART I
SUDDEN LOSS AND SLOW RECOVERY
CHAPTER 1
Letters from the Heart
April 10, 1995
Dear Kara,
I was very surprised when I heard what had happened to you but I am sure that you will get better. It gets kind of boring around here without cheerful people like you because the kids become quiet. My good friend Michelle, a sixth grader here at Bath Middle School, had to have a heart transplant which I think is much more dangerous than being in a coma. But now she is back healthy and having fun as you will be, too. Everyone misses you and from all I’ve heard they are taking good care of you. You may not know everyone here as close friends, but I think that what you’ve been through affected everyone quite a lot. Many students look up to you and can’t wait until you come back. At least you don’t have to present your science project. Speaking for all of Bath Middle School, hurry and get well because people here will not take “no” for an answer.
Your friend, Serenity
Hey Kara!
How are you feeling? I hope that you get better real soon. The classes really aren’t the same without you. In science there is no one to rub the top of my head. In reading there is no one making that weird noise that you make. And in math, there is no second teacher.
Science really isn’t the same without you because you never stop talking. But I don’t really mind. It’s someone to listen to besides the teacher. And now there is nobody to copy my science answers when you don’t have them.
Steph and Heather are taking it really hard. Mrs. Roberts started talking about you and they both started to cry. Even I almost did because you have become a good friend to me this year and no class would be complete without a Kara Anglim in it.
This morning when Mrs. Brunette was reading what the letter from your parents said, she even started crying. So you can see how much everybody misses you. I hope that you get better soon and everybody here loves you.
The person who sits beside you in science, Tommy
Hey Babe!
You sure know how to scare people. Don’t you ever do that again. I miss you so much. I love you a lot. Let’s never get in a fight again. Kara, so many people are worried about you and care for you. The whole town of Bath is praying for you. I photocopied Stairway to Heaven for you so you can start playing it on the piano when you come home. Chorus is not the same; there is no one here to fool around with. You never know how much you care for a person until something like this happens. I miss you so much. I need you to come back so you can make my mornings at school much brighter. I love you and miss you. Please get better soon and come home. I love you.
Love, Amy
P. S. You are one of my best friends in the whole wide world.
Kara Bear,
School isn’t the same without you. You always brightened my days. Come back soon so you can make me smile and laugh. Everyone cares a lot about you, especially me. You are in my prayers and heart. Everyone is trying to be strong for you, but it is hard to hold back the tears. It makes me glad to know that you are getting better. I was looking at old pictures and saw how many wonderful memories I have of you. Come home soon so we can make more memories and take more pictures. I just want you to know how much I love and care for you and hope you get better soon. I love you.
Kate H.
Kara,
I am so happy to hear that you are getting better everyday. Pretty soon you will be fully recovered. Everyone at school is really concerned. They all miss you. I do, too. It isn’t the same here without you. Well, I would have had everyone sign this at school, but I wanted to have one card just from me.
When I found this card it reminded me so much of the day when Kate and I were at your camp in your canoe. We wanted to make it as far across the lake as we could, but we were interrupted from our determination by the water fight that was started.
After thinking about it for awhile, I realized that you have to pull through this one. No matter how big the fight, we always pulled through it together. You are not alone in this battle. I can’t speak for everyone else, but I know that I pray every night for you, hoping that you will wake up and be all better. I am sure that I’m not the only one who prays for you. Just remember that even though it sounds really corny, I will always love you! I know that you are strong! You will make it through this.
Love always,
Vanessa
Kara,
I am going to start writing to you in a journal. I think you will want to hear what was going on at the hospital and in life. Friday was a half-day. Remember that deal we had with our parents? That if we went to the dance we would have to stay together on the half-days. Well, my mom made me come home even though you weren’t there with me! I went to the dance to TRY and get my mind off you. It didn’t work. I was so scared. When I first found out at the track, Angie hugged me and told Amy I was really scary to look at because I was white and shaking and standing there. You really scared me! I guess you really got me back for popping up in your window when you were eating ice cream out of the container. On Sunday we went to church to pray for you—the minister said a special prayer for you. Then I went to visit you! You look so beautiful! You were having a really good face time! Not one single zit and you have a better tan than Guerin or Emily! But it was kind of scary seeing you—you had tubes out of all your fingers, nose, legs and arms.
Going there made me realize how much I loved you and missed you. Well, I’ll write to you tomorrow.
Love,
Kate B.
Dear Kara,
I don’t know you very well, but I’ve been where you are. I know it’s scary and uncomfortable but the feeling you get when you finally come home is wonderful. You notice things you never paid attention to before and normal stuff seems new and exciting. And believe me, I sympathize about the hospital food.
When I was there, the nurses were really caring and considerate. I know that this is really hard for you, but you’ll get better soon, so don’t worry.
We’re signing up for classes today. I can’t wait to be a freshman. Open lunch is going to be such a blast! Everyone is worried that all the upperclassmen are going to beat them up. I think that’s stupid. The upperclassmen are really nice and I should know because most of my friends are juniors and seniors.
I hope that you get better soon. We really miss you here in Reading. Everybody is concerned for you and we want you to come back soon. Hey, maybe you’ll get an extra couple of days vacation. I hope to see you real soon, Kara.
Best wishes,
Lacey
CHAPTER 2
Shocks at the High School Track
The time was 3:03 p.m. on April 7, 1995, and Alan Douglass was on duty at the Bath fire station when the call came in that someone had collapsed at the high school track. He and his driver, Robbie Stailing, were off in seconds. It was now 3:04. Alan prides himself on being ALS (Advanced Life Support) trained and certified. He is a full paramedic which means he has the most experience and highest possible ALS rating, and he treats every call as if it needs every bit of that training. The Bath Fire Department ambulance arrived at the track at 3:07 and was waved through the gates by some of the kids. The ambulance lapped the track to the spot where Kara was lying, her coach kneeling beside her and a small knot of kids clustering around her. Alan’s first shock was rolling over what he thought was a young boy to see it was a girl. Then a series of other shocks followed. There was the shock of seeing the horrible bluish color of her face, which showed she had not been breathing and was probably in full cardiac arrest. There was the shock of recognizing this girl as Kara Anglim, whom he had known for years. Another shock registered when out of the corner of his eye he caught the expression on the coach’s face. The coach had suddenly realized that Kara’s life was in danger.
Allowing no time for emotions, Alan acted swiftly. He cleared her airway with his finger, and operating on instinct, he gave her two mouth-to-mouth breaths while Robbie got the Ambu bag out of his pack. Alan then gave Kara a couple of deep chest compressions and put his Lifepac 5 portable monitor/defibrillator on her chest. This device can both read the electrical activity of the heart—the electrocardiogram, or ECG—and deliver a large shock to convert any detected abnormal heart rhythm. Robbie breathed for her with the ventilator bag via a mask. The monitor revealed Kara was in ventricular fibrillation. This rhythm makes the heart behave in a way that produces no coordinated contraction and thus it pumps no blood. It must be converted to normal quickly, otherwise death will soon follow. Alan took a quick tracing for the records and began to charge the defibrillator’s capacitor when he realized he did not have a fully charged battery. He had a sinking feeling as he gave Kara a couple more chest compressions and Robbie ventilated her. “Things are not going well,” he thought as he changed the battery, “and we need more help.” Robbie is an EMT or emergency medical technician. EMTs know basic life support and are trained to assist. Alan realized that they would need more than the two of them if they were going to save Kara. Alan charged the new battery and delivered the usual 200 joule countershock across Kara’s chest. On the monitor her rhythm still showed ventricular fibrillation. She had not converted back to a normal cardiac rhythm. He gave her a couple more chest compressions as he charged the capacitor for another countershock. As he delivered the second shock to Kara, his and her luck changed. Kara came out of ventricular fibrillation and, simultaneously, Mike Drake and David Hudson arrived at the scene. Both were off-duty but had heard the call on their scanners which they keep open for emergencies. Mike has intermediate ALS qualifications. David is a full paramedic. Now David and Alan, the two most experienced men in the town of Bath, were there to help Kara.
Mike laid out the kit Alan would need to place a tube in Kara’s trachea to better ventilate her. Robbie took over the chest compressions as Alan moved to Kara’s head and smoothly and easily put an endotracheal tube in Kara’s trachea. At the same time David slipped a 16-gauge angiocath (a large bore intravenous catheter) in Kara’s arm and hooked her up to an intravenous solution of normal saline. Now they had a controlled airway as well as IV access for administering fluids and medications. Alan breathed for Kara through the tube, watching her chest rise with each respiration as he squeezed the Ambu bag. Although she was out of ventricular fibrillation, her heart rhythm between chest compressions was bad. She had a wide, poorly formed ECG, known as an agonal complex, at forty beats per minute, half of the normal rate. This rhythm is only electrical and Kara’s heart still was not pumping any blood on its own. David gave her an intravenous injection of epinephrine to try to convert this rhythm to one that would effectively pump blood through Kara’s body as Alan and Robbie continued the chest compressions and bag ventilation. Epinephrine, or adrenalin, should have stimulated her heart to return to a normal beat but Kara’s rhythm remained agonal. A couple of minutes passed as David prepared a second epinephrine injection and also gave Kara a bolus of atropine, a drug that should speed up the heartbeat.
A second ambulance arrived with more help. Kennie Desmond relieved Robbie on chest compressions and the new members of the team began to prepare the stretcher and ambulance to transport Kara to the hospital emergency room. Her rhythm, between chest compressions still showed the agonal complex at a rate of forty. David gave her a third IV injection of epinephrine. After a minute more of chest compressions and bagging they checked the monitor once more. Kara still maintained an agonal rhythm at forty beats per minute. Alan thought to himself, “I am not sure that we are doing Kara and the Anglims any favors,” as they lifted Kara, still lifeless without a real cardiac rhythm and blood pressure, into the ambulance. What he was thinking was that he and David had done thirty full cardiac resuscitations in one year and the six people who survived neurologically intact had all been resuscitated successfully prior to being transported to the hospital. If Kara were to have hope for a meaningful recovery, she needed to respond before transport.
But Alan’s final shock came after loading Kara into the ambulance. She suddenly converted to a normal sinus rhythm at one hundred sixty beats per minute. She had a blood pressure and she took a couple of breathes on her own! As the ambulance pulled out of the track, Alan and his team now had some hope that the Anglim’s daughter would recover.
CHAPTER 3
APRIL 7, 1995
Our home telephone rang and I ran from the bathroom to answer it in the bedroom. Kara was at track practice, Guerin was in Florida swimming at a national YMCA swim meet and Tom was out shopping for a white shirt to wear to a wedding the next day.
The words were calmly delivered: “Kara passed out on the track.” I said back, just as calmly, “I’ll be right there.” A similar event had occurred to Kara in February and I thought that I knew the drill. I drove hastily to the track which is about three miles from our home expecting to see Kara sitting on the track, surrounded by her ever-attentive friends, waiting for me to take her home.
What I saw was completely different—the ambulance already racing through the track gates and a policeman named Joel telling me not to speed to the hospital. “Don’t worry, I won’t,” I assured him. I was thinking that when I arrived at the emergency room, Kara would be resting on a stretcher sipping a Coke, eating a popsicle, surrounded now by a bevy of nurses attending to her every whim.
But when I arrived at the emergency room door, I could sense that the ambulance had been parked quickly and that Kara had been just as quickly rushed into the emergency room. I haphazardly parked my car off to the side of the hospital entrance as fear and worry were replacing my vision of Kara sipping a Coke. I ran into the emergency room and pulled back the dividing curtain to see Kara lying on a stretcher in what I knew in my heart was critical condition.
She was, indeed, surrounded by a bevy of nurses and technicians but she was intubated and a respiratory therapist was breathing for her. She was attached to a cardiac monitor, an automatic blood pressure cuff, an oximeter, had two IVs running, one in each arm, and a catheter in her bladder. Being a nurse, I knew the questions to ask. “Did you defibrillate her?” “Yes, two times,” came the answer. “She was in v-fib when we arrived,” said the EMTs, “and then she went into an agonal rhythm. We didn’t think that we would get her back.”
Now my observations were a mixture of mother and nurse as she lay so dependent upon the skill of others in the emergency room. She had on her red and white Umbro shorts. I remembered the day I bought them. Someone’s brown plaid flannel shirt lay beneath her. I wondered whose shirt it was. Her rings were still on her fingers. I thought I had better take them off in case her fingers got swollen. Her chest had slight red marks on it from the defibrillator. “How can this be happening?” I asked myself. She was so dirty from the track. I kept trying to wipe the dirt off as I talked to her and told her that I loved her, as I begged her not to leave me. I watched the monitor and listened to the interplay among the emergency room team members.
Then came the questions. “Where is your husband?” “Out buying a shirt.” “Where?” “I don’t know.” I felt as if I were a bad wife because I didn’t know where my husband was. I wondered if they knew where their husbands were all of the time. “Do you want the priest to come?” “Yes.” By asking this question, I knew that the emergency room staff thought that Kara might die. “Can we call someone to be with you?” “Yes, get Linda.”
There I sat on a stool as I watched these people try to save my daughter’s life. I saw the dopamine drip, heard the blood gas results, saw the chest X-ray and pieced together what was happening before my eyes. I knew exactly what Kara was facing and that her future lay somewhere between death and a complete recovery and that there was a long continuum between those two points where she might come to rest.
Suddenly Linda Coes appeared and her arms were around me. Linda is my best friend and we have worked together for years in the operating room. I observed the look of shock and amazement on her face as she absorbed the scenario before us. Linda always knows what to do and she mobilized herself to sit by Kara’s head and whisper into her ear. I didn’t need to hear the words because I knew that she telling Kara not to be afraid and that she was going to be fine. At one point, Linda looked at me and said, “What happened?” I couldn’t answer her because I had no explanation. I just looked at her and said quietly so no one else could hear, “She is going to die.” But Linda wouldn’t allow that thought. “We are not going to let her,” she said.
Next the lanky, craggy Catholic priest appeared in the emergency room. He looked like Ichabod Crane. It was amazing to me that he was there to give the Last Rites to my daughter. I remembered learning the seven sacraments in second grade. Then Last Rites were called Extreme Unction, and I remember not paying too much attention to this particular sacrament because, after all, it was the last sacrament we learned and it seemed reserved for old people. The priest prayed over Kara, his voice more distinctive than the hum of the working voices. I heard him say, “Forgive Kara her sins,” and I remember saying, “She didn’t even have a chance to make a sin.” I immediately felt apologetic for being cynical. Even at that early stage I knew that cynicism wasn’t an emotion that would help our family through this. The priest mumbled some words of encouragement to me and wafted off just as a benevolent spirit should.
The cast of main characters remained fairly constant in the emergency room but new ones kept entering, exiting and then reappearing. Dr. Rebecca Chagrasulis was the emergency room team leader and I knew that Kara was in capable hands with her. She had taught the Advanced Cardiac Life Support course many times and I had great respect for her skill. Dr. David Enright, Kara’s pediatrician, now appeared at her feet. I was glad to see him. He is a serious and hard-thinking doctor and his presence could only help. I didn’t even greet him. My first words to him were, “Could you call Dr. Allan?” Dr. Walter Allan is a pediatric neurologist at Maine Medical Center, and he had been Kara’s doctor for five years. I knew that we were going to need his help to assess Kara’s neurologic status, and I just hoped that he was available.
Laboratory technicians, X-ray technicians, respiratory therapists, nurses, doctors and EMTs all played their parts. They were in and out, on the telephone, and arguing politely with each other. I was wondering if Kara were having a “near death experience” which I had heard people who had survived catastrophic events describe. Was she floating above us looking down and observing? I looked up but all that I saw was the ceiling. “Don’t be weird,” I told myself.
Kara’s condition was extremely critical but she was stable enough for the team to consider transferring her to Maine Medical Center which is thirty-five miles away in Portland. I knew that they were trying to decide how to get her there in the safest and most efficient way possible and there was definite controversy over this issue. All that I really cared about was that I would be allowed to ride with her in the ambulance and hold her. I wasn’t sure how much longer I would be able to have her and I wanted to spend every moment with her.
The decision took a while to make, but once it was made, Kara was quickly transferred into the ambulance, and she and I and Dr. Enright, an emergency room nurse and two EMTs climbed into the back of the ambulance. Linda knew the EMTs and they allowed her to ride up in the front with the drivers. I was so grateful that Linda was there. I knew that she would be able to be strong in case I couldn’t be. Kara felt so cold and before we drove off I asked the nurse for some blankets. A mother’s job is to keep her children warm.
As we were leaving, a nurse told me that they had located Tom at home and that he would meet us in Portland at the hospital. He was just starting to cook a Chinese stir-fry dish that Kara had requested for dinner. I felt that bad feeling in my stomach in sympathy for Tom. At least I was with Kara and knew what was going on with her. I was part of the process and the hope. All Tom had was his imagination and his fears. Maybe he did not have any hope. “Dear God, help us be strong,” I prayed, “and help him not be too scared.”
CHAPTER 4
With Grace and Maturity
The ride to Portland was quick and I only remember asking three things. First I asked Dr. Enright what the date was. He looked at his watch and replied, “April 7th.” I knew that date would now be as memorable as a birthday or an anniversary. The second thing I asked was “Do you think that Kara is getting too much fluid?” as I observed frothy secretions project from her endotracheal tube. I didn’t listen to the answer as I started to imagine how hard it must be to balance enough fluids to sustain a blood pressure but not produce pulmonary edema. I couldn’t watch how fast the IVs were dripping because the motion of the ambulance made it impossible. The third question was “Where are we?” “At Dexter Shoe,” came the answer. That meant we were in Brunswick with another half-hour until we arrived at Maine Medical Center. Mostly I kept holding Kara. Her arms kept wanting to hang over the edges of the stretcher and I knelt by her side keeping her arms safely tucked in close to her body.
Sometimes I watched the cars on the highway. In second grade at Catholic school we learned to say a prayer whenever we heard a siren or saw an ambulance or fire truck. Someone was in distress and needed our sweet and innocent prayers. I still whisper a prayer although my prayers now are not nearly so sweet nor so innocent. For all those people in cars driving with us on the highway, April 7 was an ordinary day. I’m sure none of them imagined that inside was a fourteen-year-old girl who only hours before had been a silly and carefree eighth grader. Maybe they knew from their second grade teachers that they were supposed to pray for us.
We arrived at the hospital and parked at the emergency room entrance which resembled a big cement loading dock. As I hopped out of the ambulance, I saw Tom standing outside. He looked calm. That is a good trait, to be calm in the presence of an emergency. By this time he knew that Kara had collapsed at track practice and that she had survived a cardiac arrest but those were the only two details of which he was aware. I didn’t know much more than that. With his arm around me, we watched, silent and resigned, as the EMTs lifted Kara from the ambulance.
Dr. Sandy Bagwell, who was to be Kara’s physician in the Special Care Unit, met the ambulance and I could see her quietly assessing Kara and scanning the situation. There were probably other people there but I only remember Tom and Dr. Bagwell. We went through some doors and into a big steel elevator. Once the doors opened on the upper floor, we traveled down a long hallway, into the Special Care Unit, and then into the room assigned to Kara. A male voice asked me, “Does she have asthma?” As I answered, “No,” I thought gratefully that at least there was one problem that she didn’t have. Dr. Bagwell asked me, “Does she have any siblings?” “Yes,” I said, “a sister.” “Where is she?” “In Florida at a swim meet.” “When will she be home?” “On Sunday.” At the time I couldn’t understand why she was so interested in Guerin when Kara was the critically ill sister. It took me many days to realize that it was because Kara’s condition was so precarious that our whole family should be together while we could. In case ...just in case.
The drapes of the cubicle were shut and the door was closed and I knew the flurry of activity that was going on in there. I didn’t mind not being in the room. Right now Kara needed their medical expertise more than she needed my mothering expertise. I think that I work better as a nurse when I don’t have family members observing my technical skills and probably the Special Care Unit staff felt the same way.
As we waited, our friend Sandy Zimmerman appeared. He is a Special Care Unit physician and we know him from various activities at the Bath YMCA. He was the first person who made me smile since the phone call came. Linda was telling him that she had been at the beauty shop getting her hair streaked when someone tracked her down and told her that I needed her. He glanced at her half done hair-do and said, “I hope that you didn’t have to pay.” Both Linda and I looked a fright.
Next a little dark-haired social worker suddenly stood in front of me. She had on big thick-framed black glasses. They resembled the glasses that Aristotle Onassis wore. I had to concentrate hard on what she was saying because I kept looking at those glasses. She told me a number of things but I didn’t absorb most of them. I pretended that I did and kept saying “Yes, okay” to everything. The only things I did remember was that we could stay overnight in a Portland hotel for a cheaper rate if we chose and that we could get some temporary cash if we needed money. I sensed that we were part of a system that was set in motion at the medical center whenever a catastrophic illness occurred.
Then came a phone call for me at the nurses’ station. “Hello,” I said tentatively because I had no idea who could possibly be calling me. It was a church lady telling me that the Catholic church in Bath had started a prayer chain for Kara. I wondered what a prayer chain was, but I knew it was something for which I should be grateful. Maybe they planned to pray all night for Kara—they would be exhausted by the morning.
Dr. Allan appeared. Over the years that he had been Kara’s doctor, I sort of had developed a sense of his personality and I had developed a definite sense of his skill. I was so glad to see him and so relieved that he was available to help Kara that I gave him a hug. There is no delicate way to say it—we needed him to tell us if there were any hope for neurologic recovery for Kara. I asked him, “Will you help us make the right decisions?” He said he would and he did. Then he went into the room to examine Kara and told us that he would talk to us after- wards.
Dr. Maribeth Hourihan was already in Kara’s room. She is a pediatric cardiologist. She is blond, cute and smart and I knew that Kara would love having her as her doctor. She introduced herself to us and told us her plan which was to do an echocardiogram and see how Kara’s heart looked after the insult that it had suffered. She was also looking for reasons for the cardiac arrest. She, too, told us that she would talk to us after the echocardiogram.
I knew that Kara was getting excellent care, and now all we could do was wait for the experts to give their opinions and plans. Tom, Linda and I went into the hallway outside the unit to give the doctors and nurses the time they needed and maybe allow ourselves the time to take a deep breath. That was not to be, however, because a crowd of friends awaited us, wanting news of Kara’s condition and hoping to help.
Rufus Coes, Linda’s husband, said to us, “What are you going to do about Guerin?” I was thinking that we should just let her enjoy her last day in Florida, let her drive home with the rest of her swim teammates and then help her deal with the reality of Kara’s sudden illness on Sunday. Luckily Rufus was being more realistic and analytical than either Tom or I and he said, “You have to tell her the news before she hears it from anyone else. Also, we have to make plane reservations for her so that she can fly home as soon as possible.” He said it so authoritatively and so assuredly that I knew that he must be right. He dialed the phone number as I pondered the correct manner and the right words to tell Guerin the devastating news. This is not something that is covered in Dr. Spock. But I did know that my attitude would become her attitude and I had to be honest but allow her the luxury of optimism and hope. First Linda spoke to Guerin as I tried to collect my words and thoughts and then Linda passed the phone to me. Guerin probably knew immediately the depth of the tragedy our family was facing because my voice was so strange. I sounded strange even to myself.
Guerin was eighteen, a senior in high school, and her life was a frenzy of college plans, swimming, friends and fun. Now she would have to become an adult instantly. I told her the story and she handled it well until I told her that Kara was presently in a coma. She started crying and asked me if Kara was going to die. I told her that Kara was critically ill and that everyone was working hard to keep her alive but that no one knew the answer to that question right now. Then her crying turned into uncontrollable sobs. I told her that Tom and I were holding ourselves together and that she had to do the same. Sadness and fear were emotions that we couldn’t deny but we all had to handle them with grace and maturity. I expected that of her and in the weeks to come she did not disappoint me. Plans were made for her to fly home to Maine the next day and soon she would play a big part in Kara’s recovery.
CHAPTER 5
A Doctor’s Impression
by Walter Allan, M.D.
It was a Friday afternoon and I was seeing the last of my patients when Mary-Lou, my secretary, put through the call from Dave Enright. “Walter, I am in the emergency room with Kara Anglim,” he said in a calm voice. “She was at track practice and had what was described as a seizure. By the time the EMTs arrived she was in v-fib and had to be countershocked twice...”
While he was in midsentence, I knew this was not a call about a simple seizure. When he mentioned that Kara had been at track practice, I felt something much worse had happened. My most vivid memory of the conversation is that I was a step ahead of what Dave was saying. I was thinking about Kara’s last visit with me in March. I had uncertainty about the cause of her spells. This thought and its implications were slowly making their way forward from the back of my mind as Dave was telling me the details.
Shit, Dave, this was an arrest. It wasn’t a seizure. This doesn’t happen after a seizure. I have always thought that things weren’t clear cut here. Jesus Christ!”
“I think you’re right. She’s in sinus rhythm now and her vital signs are okay but she’s posturing and tremulous. Do you think these movements might be seizures?” he asked. Kara’s diagnosis had been epilepsy and he must have been wondering how I could be so sure Kara had a completely different medical problem.
“She has extensor posturing from anoxic injury because of the arrest. It’s not a seizure. You don’t get v-fib from a seizure,” I said, sure of my thoughts about what must have happened. I was still stuck on the idea that Kara had nearly died from a cardiac arrest. I had no idea of why Kara would have had a cardiac arrest but there were more pressing issues to discuss. “Are her pupils working?” He answered, “Yes,” and we proceeded to make arrangements for Kara to come down to Maine Medical Center. I had to make some calls to the Special Care Unit and Sandy Bagwell, the chief of Pediatric Critical Care Medicine, to get things arranged and I told him that I would call him back. Then he added, “Maryann is here and wants to be sure you will be there to assess Kara.” I said, “Of course, I’ll be there.”
I called Sandy and said, “Sandy, Dave Enright has a patient of mine in the Bath ER with a v-fib arrest. She has reactive pupils and is in sinus rhythm. They want to transfer her down. I think the best thing is to let them transfer her rather than wait for our team to go to get her, but you should call him.” Then I said what I have told a hundred-plus colleagues, residents, nurses, therapists, administrators, typists, cleaning ladies and passersby when I first relate Kara’s story: “Kara is fourteen and one of my favorite patients. I’ve known her since she was eight and her mother would send me a Christmas card with her photo each year. It would say things such as: ‘To our favorite doctor’.”
I explained to Sandy that I had followed Kara for epilepsy but when I last saw her in my office I was wondering if that was really the diagnosis. Now we knew it was cardiac. She said she would get the pediatric cardiologists involved and asked what I thought the outlook was. “There is no telling. I’ve got to see her first and get an EEG.
Dave says she’s stable but he wants to get her down here as soon as possible since we don’t really know what happened.” I ended the conversation saying, “This is going to be tough,” thinking about Kara and Maryann and those Christmas cards. “I’ll meet you in SCU if you page me when they get here.”
I finished the phone call and went out to get my last patient. I stopped by Mary-Lou’s desk and said, “Dave Enright says Kara Anglim had a cardiac arrest and is comatose up in the Bath ER.” She looked struck by the news. Mary-Lou also especially liked Kara and Maryann. I finished in the office and then went to the Neonatal Intensive Care Unit to look at cranial ultrasound scans and see if there were any neurologic problems they needed me to assess. I began telling Kara’s story to Doug Dransfield, my closest friend and head of neonatology. I think I tell these stories to help sort them out in my own mind. I was thinking of what I would see and say in the next hours when I got beeped. It was Sandy Bagwell. Kara had arrived at the Special Care Unit.
I remember coming into the unit and seeing Kara’s parents. Maryann gave me a hug and said how relieved she was that I was there. I met Tom for the first time and shook his hand. I asked them both to go out of the room so that I could examine Kara and then we would talk about her condition. Maribeth Hourihan, one of our pediatric cardiologists, was already there examining Kara.
On my exam Kara had intact brain stem reflexes and reactive pupils—both good signs. She had nearly constant tremor of all muscle groups, as Dave had described. These were the movements he thought might be seizures. However, when you pinched her, she had slight flexion of her arms. It wasn’t good, but it wasn’t hopeless. I vaguely remember Dave being there and speaking to him but mostly I was trying to think of how to talk about all of this with Maryann and Tom.
I met with the Anglims in the room we use for teaching purposes, just around the corner from Kara’s room. I started by asking Maryann what had happened at the track and in the emergency room. After listening to be sure I had the full story, I tried to give the Anglims my best idea of how things were at the moment.
What matters most, immediately after an arrest, is whether the person regains pupillary response,” I said. “Dave told me that Kara had reactive pupils in the ER, which is a good sign. When I looked at her just now, she had intact corneal reflexes and a gag reflex as well. When you pinch her, she flexes her arms slightly which is also a good sign. But, of course, she is in a coma, which is never good. There is statistically-based information about the outlook from the six-hour post arrest exam. So we’ll look at all this again in a few hours. Meanwhile, we’ll get an EEG―an electroencephalogram or brain wave test―to be sure that those tremors aren’t seizures. I don’t think that they are but we need to look with an EEG. Right now, I think we should be cautiously optimistic since she has a better exam at three hours than she had in the Bath ER. We’ll know better at six hours.”
Maribeth had come with me to talk with the Anglims about Kara’s heart and her sudden cardiac arrest. She said she was not sure what had caused the arrest and that there were more tests to be done. But, she said that Kara’s heart did not look damaged and was pumping well at present.
At six hours, the EEG showed no sign of seizures but there was generalized slowing. That couldn’t tell us much either way, but she did have brain waves. Her exam showed better flexor movements in the arms and the nurses noted spontaneous eye opening. All of this was encouraging and, statistically, I thought that Kara had at least a fifty percent chance of making a recovery to a good level. By a good level of recovery I meant being able to return to school, perhaps with help, but maybe even recovering completely. I did my best to give the Anglims some hope.
CHAPTER 6
A Mother’s Impressions
Tom and I and our ever-growing entourage waited in the hallway near the pay telephone for the doctors to complete their examinations of Kara. We made quite a few phone calls across the country to family members to inform them of Kara’s collapse and I learned how hard it is to use an AT&T calling card when one is upset. Someone should tell them that it is just too complicated to dial all of those numbers in a crisis. AT&T should develop an easier system made especially for bereft people.
It seems that we waited for about an hour, and I felt ambivalent about talking to the doctors and hearing their assessments, opinions and plans. I dreaded hearing anything negative and hopeless, but I knew that perhaps what I would hear would be positive and hopeful. It didn’t matter how I felt because we would have to deal with the reality of Kara’s condition whether the news was good or bad. Suddenly Tom and I were in a freezing and empty classroom with Dr. Allan and Dr. Hourihan. I was so cold and so scared and so nervous. I was holding Tom’s hand tightly, and I must have been breaking his fingers or at least causing some nerve damage, but he was probably too numb to notice.
It must have been difficult for Dr. Allan and Dr. Hourihan to talk to us. We are parents who tried hard to do everything correctly as we raised our daughters. There was always a part of me who thought that if I loved them, fed them correctly, kept them safe, gave them everything they needed but didn’t spoil them, encouraged good morals, read to them, kept them clean and warm, helped their educational and cultural development and taught them how to laugh and see the humor in life that we would be immune to such a disaster. We probably were not that different from the types of parents that those two doctors are. Now we were experiencing every parent’s nightmare. I imagine that we were a fairly heartbreaking image. But doctors have to separate the emotional from the physical, and they were able to give us the facts of Kara’s condition and allow us the hope of a recovery for her. That was the most important message I received from the meeting in that cold empty room. There was hope and maybe my heart didn’t need to feel as cold and empty as that room.
First Dr. Allan spoke about Kara’s neurologic status and its implication for her recovery. Neurology, to me, is a complex confusing maze of basal ganglia and neurons, but he spoke simply and clearly of pupillary reaction, corneal and gag reflexes, flexor movement and response to pain and how all these were allowing us cautious optimism with the emphasis on the word “cautious.” The scheduled EEG would answer our most fearsome question: “Would Kara have brain waves?”
Then Dr. Hourihan gave us her assessment of Kara’s cardiac arrest. She said simply, “Your daughter experienced what we call sudden death.” I remember gasping audibly and saying, “Dear God!” I know that I was biting my lip so I wouldn’t cry. I knew about sudden death from the Advanced Cardiac Life Support course that I am required to take every other year, but in my naivete´, I had considered it a problem of unfortunate older individuals, not my daughter. Sudden death is a medical term that encompasses a number of different diagnoses and in Kara’s case, Dr. Hourihan felt the cause was an electrical disorder of the heart muscle, possibly one called Long QT syndrome. She had already done the echocardiogram of Kara’s heart and told us that it was mildly abnormal which she expected and she would repeat it tomorrow at which time she expected it to have returned to normal. Then she spoke about treatment. Drug therapy, pacemaker and implanted defibrillator were all mentioned. She concluded, “We will protect her heart so that this will never happen again.” That statement was aimed at Kara’s future so it seemed a positive way to end this meeting.
We went back into the unit to see Kara again. The nurses had her all cleaned up and her hair combed but there was no denying the fact that this was a sick child. Now, in addition to all the equipment that monitored her in the emergency room at Bath, there was also an arterial line in her left wrist, a triple lumen catheter in her right groin, a nasogastric tube, a ventilator and a temperature probe. Linda and I examined the insertion sites of every invasive monitor and tube. In the operating room, we are used to our patients being heavily monitored and sometimes you cannot separate the nurse from the mother. We checked all of the numbers and tracings on the monitor. We might not know neurology or cardiology, but we do know monitors. Despite the fact that Kara was surrounded by all of the accouterments of a severe illness, she looked just as pretty as Sleeping Beauty lying in the bed. Her face was serene and peaceful and her body relaxed. If only the fairy tale could come true and a princely kiss could wake her and make her well.
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