Compassionate Care
March, 2001

I want you to know how much I appreciate your website and information about HLHS. My son, Wesley, would be 6 years old this month, and so much more information is available now than in the recent months after he died. The information that I could find was mostly journal articles from medical journals. Your website provides practical information which I found easy to read and understand.

I guess I do take issue, though, with your view on "the compassionate route" not being compassionate. When my husband and I were told that our first born child had HLHS and told of our options we were completely devasted. We were well informed of our options and asked many, many questions. For us, we felt like pursuing surgery or any other heroic measures would be completely for us and not for him. We were told that if he survived his surgery that his whole life, he would just be surviving. We were told he would have a very poor quality of life. I would have done anything to make him well. I would have given him my heart if it would have cured him. I had carried him for nine months, prepared myself to be his mother, and prepared myself to make the best decisions I could for him. I never questioned my and my husbands decision during Wesley's life-he lived for five days. I am grateful that we had him for those five days and would never change having had him. He was a gift to us and continues to bless our lives with his memory.

I do not condemn parents who choose surgery for their children. I don't think anyone can pass that kind of judgement-especially in such a delicate situation. I cannot say that I know how those parents felt when they were given their choices because everyone experiences life differently. I believe that parents, in almost all cases, make the best decisions that they can for their children. As parents, we only want the best for our children. I do not regret the decision my husband and I made for our son. I regret that he was born with such a terrible condition.

I really just wanted to help you understand my perspective. So many times when I read any information about HLHS it is always about children surviving-which, don't get me wrong, is wonderful-and I hope to continue to hear that. I guess, I would like others to know though that deciding to allow Wesley to die was not because I did not want him. It was not because he wasn't healthy. It was not because I didn't want to take care of him. It was because I tried to imagine him, on the operating table-in a room full of strangers who did not know him-and him dying. I tried to imagine him as an older child looking out the window watching the other children run and play and wondering why he wasn't like them. I tried to think if he would have thanked me or hated me for having prolonged his suffering. Maybe that is wrong and maybe that is extreme-but I wanted to enjoy his life while we had him. However long that was, I wanted to hold him, nurse him, sing to him, talk to him-be his mommy. If he were to die, I wanted to be with him. I didn't want him to be surrounded by people who didn't know him, who wouldn't hold him while he was dying.

Okay, so I know I have unresolved issues about my son's life and death. I am still working on those things. I think about him every single day. I tell my son and daughter about him. I will never forget him, and I will always be grateful for his life. I appreciate your allowing me to express my opinion.

Sincerely,
Shannon L. Johnson

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