The Life and Death of Alexis Hoffman
by Jane Hoffman
Hope is a four letter word. From the standpoint of a survivalist, it may seem cynical. Twenty two years ago on Christmas Day, my daughter, Alexis, died of a heart transplant. She received a new heart Christmas Eve after an accidental death by a toddler in Minnesota and it did not work in her body. At 3:30 a.m., the University of Minnesota surgeons came in the waiting room to share the news. The surgeon’s hands were wringing in grief after he said “We try our hardest.” There were no words really to capture the image on his face.
I wonder about the significance of giving birth, only to find at 8 months old that my daughter had a heart condition called cardiomyopathy where a common virus damaged her heart and enlarged it so her heart was pushing her against her lungs, making it harder for her to breathe or swallow. My husband, Craig, and I moved from Los Angeles, California in 1991 after 4 years of urban life to Stoughton, Wisconsin where he could be a principal of a Christian school. He wanted the good life for my then 4 month old daughter….a normal Midwestern life. The adjustment wasn’t that easy but I eventually found work after taking two months off. Having a child for the first time was a delight. I waited until age 30, accomplished all I planned until that moment. I had done my fifteen minutes of fame on television and was ready for full time motherhood. My daughter has steel blue eyes, was inquisitive and the type of child who never sat still. Around six months old, she was coughing up her bottle more and it didn’t seem right. I took her to the local Stoughton doctors and they didn’t really have an explanation. They just thought it was a cold. One day at work, I received a call from my babysitter saying Lexie doesn’t look right. She seemed weak and had labored breathing. This time when I took her to the doctor, they decided to take an x-ray. She was 8 months old. After the x-ray, they saw that her heart was large enough to cloud the lung area but they said “We think she might be missing a valve or have a defective heart.” The doctors referred me to Doctor Corliss, a heart specialist in Madison, Wisconsin. Dr. Corliss determined a virus had damaged her heart a few months ago and now she needed a transplant. She was put on four medicines – Captopril, dijoxin, lasix and aspirin. She was given 4 medicines six times a day. Over the next year, she improved until she got “thrush,” an infection in her mouth, and dropped to 13 pounds at 17 months. It was hard to look at her so frail and she had no appetite. I did a lot of praying at this point. I felt our souls had merged, and we were either dying or living with her. Her breath was my breath, her life was my life and identity. I did not work anymore, I stayed at home to keep a close watch on her. She still had that determination and persistence of a young, active child. The town held two fundraisers for us, including a Fish Boil to raise money for our medical expenses. We only had private insurance and it was not very good. I would have to drive to Minneapolis every 5 weeks for transplant work ups or critical appointments. Madison did not have a transplant service for children. The insurance was a headache and we had no real security on my husband’s $20,000 salary. I enjoyed spending time with my parents who lived in White Bear Lake and they were able to see Alexis more often due to her medical visits. Lexie was a happy child with an old soul. She played, liked books but she had a perception about her that she may have known somewhat what may be happening. After all the preparation was made, she was put on a transplant list. My husband and I had drove to Minneapolis for Christmas and just as we were pulling into my brother’s house on Christmas Eve, the beeper went off. We drove the 15 mile drive to the U of Minnesota hospital. I remember my daughter stroking my husband’s beard. She was a good child with a lot of love to give. As parents, we did not know that would be our last night with her. When she died on Christmas Day, I did not know if it was God’s providence or a way to comfort me that he wanted to take her on a significant day. It did not lessen the pain but it did give me some assurance that maybe a life of hospitals, future transplants, anti rejection drugs and the continual struggle to live may have been a lot to bear as well. For a brief time, I had a beautiful child in my life and then she disappeared. I won’t have all the answers until I get to heaven. For those who tried to challenge my faith, I brushed them off. God had a purpose. I am just not sure what he fully intended. She was 20 months old when she died.
I now have a 15 year old who is six foot two and healthy and is a 10th grader. God blessed me with a new child in 1998.
I wonder about the significance of giving birth, only to find at 8 months old that my daughter had a heart condition called cardiomyopathy where a common virus damaged her heart and enlarged it so her heart was pushing her against her lungs, making it harder for her to breathe or swallow. My husband, Craig, and I moved from Los Angeles, California in 1991 after 4 years of urban life to Stoughton, Wisconsin where he could be a principal of a Christian school. He wanted the good life for my then 4 month old daughter….a normal Midwestern life. The adjustment wasn’t that easy but I eventually found work after taking two months off. Having a child for the first time was a delight. I waited until age 30, accomplished all I planned until that moment. I had done my fifteen minutes of fame on television and was ready for full time motherhood. My daughter has steel blue eyes, was inquisitive and the type of child who never sat still. Around six months old, she was coughing up her bottle more and it didn’t seem right. I took her to the local Stoughton doctors and they didn’t really have an explanation. They just thought it was a cold. One day at work, I received a call from my babysitter saying Lexie doesn’t look right. She seemed weak and had labored breathing. This time when I took her to the doctor, they decided to take an x-ray. She was 8 months old. After the x-ray, they saw that her heart was large enough to cloud the lung area but they said “We think she might be missing a valve or have a defective heart.” The doctors referred me to Doctor Corliss, a heart specialist in Madison, Wisconsin. Dr. Corliss determined a virus had damaged her heart a few months ago and now she needed a transplant. She was put on four medicines – Captopril, dijoxin, lasix and aspirin. She was given 4 medicines six times a day. Over the next year, she improved until she got “thrush,” an infection in her mouth, and dropped to 13 pounds at 17 months. It was hard to look at her so frail and she had no appetite. I did a lot of praying at this point. I felt our souls had merged, and we were either dying or living with her. Her breath was my breath, her life was my life and identity. I did not work anymore, I stayed at home to keep a close watch on her. She still had that determination and persistence of a young, active child. The town held two fundraisers for us, including a Fish Boil to raise money for our medical expenses. We only had private insurance and it was not very good. I would have to drive to Minneapolis every 5 weeks for transplant work ups or critical appointments. Madison did not have a transplant service for children. The insurance was a headache and we had no real security on my husband’s $20,000 salary. I enjoyed spending time with my parents who lived in White Bear Lake and they were able to see Alexis more often due to her medical visits. Lexie was a happy child with an old soul. She played, liked books but she had a perception about her that she may have known somewhat what may be happening. After all the preparation was made, she was put on a transplant list. My husband and I had drove to Minneapolis for Christmas and just as we were pulling into my brother’s house on Christmas Eve, the beeper went off. We drove the 15 mile drive to the U of Minnesota hospital. I remember my daughter stroking my husband’s beard. She was a good child with a lot of love to give. As parents, we did not know that would be our last night with her. When she died on Christmas Day, I did not know if it was God’s providence or a way to comfort me that he wanted to take her on a significant day. It did not lessen the pain but it did give me some assurance that maybe a life of hospitals, future transplants, anti rejection drugs and the continual struggle to live may have been a lot to bear as well. For a brief time, I had a beautiful child in my life and then she disappeared. I won’t have all the answers until I get to heaven. For those who tried to challenge my faith, I brushed them off. God had a purpose. I am just not sure what he fully intended. She was 20 months old when she died.
I now have a 15 year old who is six foot two and healthy and is a 10th grader. God blessed me with a new child in 1998.
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