Laurie, my only child, died at 16 years of age during "corrective" heart surgery in Boston on December 4, 1992. She was born with a heart defect, pulmonary stenosis, two right sided lungs, a single ventricle, and a single AV valve. There was no surgery that could be done to divide her ventricle into two. We were not told that a surgery was available for her condition by her doctor until June of 1990, that if we "had asked four years earlier" it could have been done in Galveston. By the time we were finally referred to Boston two years later, the procedure "wasn't right" for her. But, according to them, she didn't need this procedure because "she had two ventricles, not one" which we had been told for 16 years. They could close the wall in the ventricle, makes two valves out of the one, and she would be "as good as new", that she would be "running the malls in two weeks", and they gave us a drawing of exactly what her heart looked like and what they would do.
The next day, after four hours in surgery, the nurse came and told us all the repairs had gone well, that they were closing her up and preparing to take her to PICU. We were so happy! Then one hour later she came and told us that they were having problems, that they had to go back in and replace the valve that they had split into two. Then one hour later she came to tell us the surgeon was worried, so it was time for us to worry. Thirty minutes later the surgeon came and told us she was stable, that they had shocked her heart 26 times to get it into rhythm and they were sending her to PICU. Then he told us her heart was REALLY BAD (the night before he told us it WASN'T THAT BAD), that he had to remove an obstruction in her ventricle (which he didn't tell us about the night before, or draw on the diagram of the surgery he did for us). When we asked him if he knew about it after the catheterization and when he was discussing the surgery with us, he said he did, but when we asked why he didn't tell us about it, he just got up and said "surgery had to be done some time", then left. Five minutes later an intern came in and told us that she had had another episode of arrhythmia and died (she had a six year history of arrhythmia and was taking medications for it, but the surgeon insisted that she didn't have a rhythm problem and that it would not be a problem during surgery). I don't have to tell you how we felt. All I could say was "I don't know what to do. I don't know what to do."
I went to see her in the O.R. after she died--it was awful! They had her all wrapped up in a white sheet like a mummy. I almost fainted, my knees gave out. I went to her, held her in my arms and cried that I didn't know they were going to do that to her, then took the rubber band out of her long brown hair and put it in my wallet. Then we were asked to leave the hospital. We told them we would like to stay in the lobby for a while because her body couldn't be sent home until Sunday and we didn't want to be far away from her until we left the next morning. They told us it was against hospital policy for us to stay in the lobby. The nurse escorted my husband up to where our things were, stopped to pick me up on the third floor, called a taxi and walked us out the front door!
It wasn't bad enough that we took her 1500 miles away from home to the "best" doctors, but to have her die away from home like that was devastating. If they had only told us everything the night before when we gave our consent, that the risk was probably much higher than we would have taken at that time, we probably would have taken her home for Christmas and let her have her first real tree, then brought her back in a couple of months. They just decided to take her life and ruin our lives by making the decision for us! We talked to many lawyers after this, but they all agreed that we could never get another doctor to testify against this surgeon because he was so well known. One lawyer had tried before for another client. Another lawyer we called told us the name of the surgeon before we could even finish our story!
Laurie had just passed her driver's test and was waiting for her license. It didn't come until after she died. It was waiting for us in the mail when we got home. We put it in her coffin with her. She never got to see it. She was all excited about being in Boston because we heard on the radio that it was going to snow. It didn't snow until after she died, while we were waiting in the airport all night long until our flight the next day. She never got to ride "first class" in an airplane. We rode in "first class" because I was crying so much the stewardess put us up there in an unused seat. Laurie came home in the cargo hold of the plane.
The happiest day of my life was when the nurse brought her into my room after she was born. I couldn't believe I had such a beautiful baby girl, something I had always wanted since I was a very little girl, someone to be with me always, to love and love me. Then the saddest day at six weeks when we were told of her heart defect. Then happy again in June of 1990 when we were told she could be helped. Then estatic on December 3, 1992 when we were told that her heart wasn't as bad as we had always been told, that they could not only help her, but make it function like mine or yours. Then life ending the next day when she died.
For a long time after she died, I couldn't even look at her picture. I felt so guilty for what I had done to her. I couldn't even go to the cemetery until a week after she was buried. For years after I was told of her heart condition I had nightmares of seeing her in a coffin. So my best friend and my boss viewed her body and took the clothes and things to put in it for me. They said that she looked "beautiful". I regret not having them cut some of her long hair for me to keep forever. We had a closed casket funeral.
On her grave marker, we have Jesus with children and pets on the left side, and on the right side the last verse of the poem that was used at her funeral - I don't know who wrote it but it went like this:
"Her golden heart stopped beating.
A determined spirit was at rest.
God broke our hearts to prove to us
He only takes the best."
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