COURAGE TO HEAL A “BROKEN” HEART
By Carol (Hyman) Allan
My parent’s life was certainly changed forever by the impact of my illness. This was a cruel beginning for my parents who looked forward to welcoming their twin daughters into the world. Just two weeks prior to our birth, my mother’s obstetrician heard a second heartbeat and overturned his own prediction that my mother would be delivering only one baby. Mother wanted twin girls with blue eyes and brown hair and her fondest wish came true.
The Friday afternoon of April 17, 1942, Charlotte and I were born. My sister Charlotte weighed in at 5 lbs. 9 oz. and I weighed in at 5 lbs. 5 oz. I arrived six minutes ahead of Charlotte; I have often joked that Charlotte was in a hurry to kick me out and that is why I arrived first. Soon after our birth a nurse was passing our incubators and noticed I had turned very blue. She quickly whisked me into an oxygen unit and the following morning a cardiologist examined me. The news was chilling to say the least. I had been born with severe and complex congenital heart disease. If my condition did not improve within a year, I would require surgery. Even more frightening was the news that if medical science did not go forward, I would not live past my sixteenth birthday. This was a devastating blow for my parents. Discussions surrounding sending me to Sick Children’s Hospital in Toronto were quickly ruled out. It was felt that because they did not yet have the technology to perform the type of surgery that I required, the Mayo Clinic in Rochester, Minnesota was felt to be a better choice for me. My cardiologist in Regina had just returned from observing many cardiac surgeons across the United States and when he sat in Dr. Kirklin’s operating theatre, he could not believe what he was seeing him perform.
In 1942 cardiology was in its infancy and little was available for treatment. I have watched cardiology unfold from its humblest beginnings. The journey from here on would be arduous and long. Much was disappointing. There was no medicine for me; there was no surgical research yet. My biggest asset was hope.
I was born a congenital blue baby. My pulmonary valve was severely narrowed, and my aortic arch was on the right instead of the left. My heart defect was labeled tetralogy of Fallot except I did not have the usual hole between the ventricles. My hole was between the two upper chambers. Fallot was the French doctor who defined this problem in babies around the year 1888. The minute they begin to walk, blue babies’ lips and hands turn a very deep blue. This is due to not enough blood getting to the lungs and the mixing of oxygenated and carbonated blood. Walking causes one to gasp for air and the heart begins to pound fiercely. The palms become sweaty, saliva is secreted, the head aches and the upper lip trembles.
When I was three my mother traveled to the Mayo Clinic in Rochester, Minnesota with my twin sister Charlotte and me. This was to be the beginning of many Mayo Clinic visits. My mother was told at that time that my heart muscle was too small to work on and to bring me back on my seventh birthday and they would operate on me then.
On April 21, 1949 at the age of seven, I was wheeled into the operating room for my first surgery at the Mayo Clinic. The surgical procedure was known as the Blalock/Taussig procedure—named after the two doctors at Johns Hopkins Hospital who were instrumental in developing this surgical technique. This was the first of two surgeries I underwent to correct my heart defects. The surgery was considered very risky and my parents were criticized because they consented to my surgery.
I was placed on an adult ward and I really felt that I was the hospital misfit, as there was no one else having heart surgery—let alone a child. Following the surgery, my family was told that the operation had been a medical failure. The only hope for me was a not yet developed surgical procedure called a bypass, but that was so far off in the future they didn’t know what would come first—the invention of the bypass or my passing. It was a devastating blow to my entire family. I sat and waited another nine years for medical science to go forward. Slowly my health went downhill.
My life was at a standstill. If there was the slightest wind, I was unable to go outside because the wind reduced the amount of oxygen I would receive. Walking was my enemy, as it would quickly bring on all of my many symptoms. I huffed and puffed my way through life. I can remember once walking by the schoolyard as Billie Buck, the school maintenance man, trimmed away at the school hedges. As I came by, he looked up from his cutting and asked me if I had had blueberry pie for lunch. I was too embarrassed to tell him why my lips were so blue. I hung my head low not wanting anyone to see me. It was a hurtful reminder of how awful I looked.
I admired everything that Charlotte did. She could run and play outside, she excelled in school, sports and music, she was pink and she didn’t get out of breath. Charlotte had three bicycles during our growing up years. I had none. Charlotte was invaluable to me though, as I was so dependent on others. Charlotte was very disciplined and she always kept me standing tall and marching forward when it would have been so easy for me to cave under the pressure of my illness. I cried a lot as a child. This was mainly due to the fact that Charlotte and her friends would go off to do sports activities or play and I was always left behind. It wasn’t that I wanted to partake in sports, it was just that I was unable to do what others could do.
It would have been very easy for me to say “Why should it be me with this illness? Why not Charlotte?” But that would make little or no sense. These were my problems, not Charlotte’s problems and no matter what I thought, in the end it would have to be me alone who would have to resolve them. No matter how bad the pain got or how I struggled to regain my breath, I would overcome the moment by saying to myself that somewhere, somehow, someone must be much worse off than me.
In October of 1957, a chilling snowstorm hit our small town in Gull Lake, Saskatchewan making it very difficult to get to school. When we finally arrived, it was apparent that my pain and shortness of breath were not going away. Charlotte was asked to call the doctor. After a day or two at the local hospital, I returned home and then back to school a couple of days later. Upon returning to school, the same scene unfolded again. When I returned from hospital this time, mother informed me that the school principal had called to tell her that I was disrupting classes and upsetting students and she was not to send me back to school again until I had had proper medical attention. This was a devastating blow to me.
At my next visit to the cardiologist in Regina, he took one look at my hands and became very alarmed. To mother’s horror he said I had to be back at the Mayo Clinic no later than December. My hands appeared to be more clubbed and it was obvious that my condition had worsened. The cardiologist insisted that Dr. John Kirklin perform my surgery. He said if he was unable to do the surgery for any reason, I was to return home. My life was slowly coming to a standstill.
Prior to my surgery, I had three tools that helped me prepare for the darkest days of my short life. First, prior to leaving for the Mayo Clinic I read the book The Diary of Anne Frank. As I read the last pages, tears overcame me. I was so overwhelmed by her story and became determined to fight hard in my battle to overcome heart surgery. Anne Frank and I were close in age and her strength and courage were an inspiration to me.
Second, I always listened to classical music, Broadway hits, and children’s records when I was home ill. One children’s album that had a profound impact on me was The Little Engine That Could. I could not stop thinking about how the big trains always laughed at the little train because he was so small and they thought he could never possibly get over the mountain to the other side. That record spoke to me. When I was at one of my darkest hours during recovery from surgery, I could sense that things were not going well. Tears overcame me. So, I just started saying over and over again to myself “I think I can, I think I can, I think I can get over the mountain to the other side.”
The third thing that had a profound impact on me was the story of a man I met while sleeping in a chair at the Kahler Hotel in Rochester, Minnesota. A man approached me and said, “Little girl what is wrong with you. You don’t look very sick to me.” I immediately said to him, “There is nothing wrong with me. I am just dying of a broken heart.” He began to tell me how he had spent many months in a hospital bed paralyzed from his waist down. Doctors told him he would never walk again. One day when his brother came to visit he asked him to go to the department store and bring him the biggest puppet he could find. His brother said, “Are you crazy?” “You can’t even move your hands. What do you want with a puppet.” Reluctantly, his brother brought him a puppet and he slowly began manipulating his hands to get them to work. From there he went on and developed strength in his legs and went on to make many guest appearances on the Ed Sullivan Show as a magician. What amazing courage and messages were given in all three of these events. I never stopped thinking about them during my dark days in the Cardiac Intensive Care Unit.
My surgery date was set for Friday, January 17, 1958. Prior to surgery Dr. Kirklin had stated to me that I would probably never walk out of the Mayo Clinic alive. I was devastated by these remarks but one thing was sure, I wasn’t going to go through all of this without coming out a winner. The following morning I was once again wheeled back into the operating room in the wee hours of the morning. I was overcome by fear. When I was told I was going back into surgery, my heart and mind began to sink low. Horror overcame me as I quickly said to myself that the surgical corrections must have been failing me. I quickly reversed my thought process and said to myself how lucky I was. If something had gone wrong, I was getting a second chance as Dr. Kirklin would be able to go in and fix it again. Dr. Kirklin had told my auntie Rose that I was bleeding profusely and it would be a human impossibility to save anyone who was bleeding that badly. He said, however, that I was still alive, and he would give me one more chance. Wasn't I the luckiest girl in the world!
No one knew that I had come to the Mayo Clinic with a definite agenda in my mind and I wasn’t about to leave until all my needs were met. I knew that this would not be easy, but I had waited for this moment all my life and I wasn’t going to let it slip away.
First, I wanted to be able to walk more than anything else in the world without being blue, gasping for air, and in constant pain. I felt strongly that if I could accomplish this small feat, somehow, in some way, I would have accomplished the greatest feat of all. Throughout this ordeal, I always kept a positive attitude and had my attention focused on my dream.
Second, I knew that this was going to cost my father a lot more money than anyone realized. I was determined that under no circumstances would I allow them to send me home to my father in a little brown box.
And last, but not least, I did not feel it was fair for Charlotte to spend the rest of her life as an only child if I should not make it. After all, not only did I need her, but she also needed me.
As they wheeled me into surgery on the winter morning of January 17, 1958, two powerful emotions overcame me. One was fear that this might be the last day of my life. I had lived with fear my entire life as my illness spiraled downhill. The other was excitement. I was filled with the excitement of knowing that one day I too might be able to walk like all the other children. Fear and excitement consumed me.
Prior to returning to my home in Saskatchewan, Dr. Kirklin told me he couldn’t believe I was alive. He said it wasn’t he who saved my life. At that moment my little Jewish temper began to flare and I said, “Dr. Kirklin how can you say that to me. Look what you have done for me.” He told me he always had to explain a death, but now for the first time he would have to explain a life. My file would not be closed until they could determine why I was alive. He finally told me the only thing he could make sense of was that my will to live was so strong, that do or die they weren’t able to break through that. He also told me that I was the longest and most difficult surgery he had ever performed and as long as he lived he never wanted to have another patient like me. This was an extremely powerful conversation for a fifteen-year-old to have. It was the power that drove me on. When I returned home to Gull Lake, Saskatchewan, a small community of 1,000 people, I couldn’t help thinking how wonderful it would have been if there was a cardiac facility or rehab center to return to. Dr. Kirklin told me to carry on as I always had. He told me I was now 100%. That didn’t make sense to me. How could I have come from where I had been and now be 100%?
A couple of months after my surgery I was lying in bed and pressing my hand against my chest to feel my heart beat as I had always done. This time I could not feel my heart beating. I became panic stricken, I thought something had gone terribly wrong. Trying to contain my fear, I went to my doctor’s office and was told that I couldn’t feel my heart beating because I had my new heart. Imagine that, my heart would no longer pound heavily in my chest. That just didn’t make sense to me. I did not realize that a normal heart should not feel like it was pounding out of my chest.
It was a tremendous struggle, but in the end I won. I owe this success story to wonderfully caring parents, whose devotion was solely to seeing that I received the best medical attention possible disregarding the expense and mental anguish it cost them.
My life has been filled with many medical blessings. My greatest pride is that I have never needed further surgery. One cardiologist once told me that my surgery was primitive and Dr. Kirklin had performed a miracle. I feel very privileged and honored to be one of “Dr. Kirklin’s Kids”. Throughout all of this, there is one thing that has remained stable—the constant love and devotion I have experienced from family and friends. Also, to the many doctors who understood my plight and gave me the best of medical care and advice, I think I have been truly blessed. To the many people who entered my life and cheered me on and to the many of you who asked me for my story, I give my most grateful thanks. Without you in my life, this story could never have been told.
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