Compassionate Care - Anna's Response
March, 2001

Dear Shannon,

First of all, I want to express my condolences on the loss of your precious Wesley. I also want to thank you for writing to me about him and your feelings.

You are so right about nothing being available for parents six years ago. My son is six now and when I tried to find out exactly what HLHS was, all I could find was medical journals and textbooks. It was like reading Greek. After I finally started making sense out of it all, I decided to make the information available in English for others. ;-)

Regarding the reason for your letter . . .

I started working on my first book when Alexander was between his first and second surgery. I saw a lot by living in the ICU with him and by meeting other parents of children with heart defects. And I admit, I was extremely biased in my feelings regarding compassionate care -- perhaps partly due to my religious background (Catholic) and partly out of self-defense for all that we put Alex through.

When I started working on my third book, I had grown a lot -- as a mother, as a child advocate and as a parent advocate. Consequently, I realized that I had a unique opportunity to help people like you -- people who had chosen compassionate care. You see, in the last few years I have met a number of people like you and I discovered exactly what your letter so eloquently stated -- that the parents who chose CC did so because they loved their children so much and they felt at that time that it was the best choice they could make. None of the people I've come to know were monsters. They were loving, hurting parents.

So when I started working on The Heart of a Mother, I actively sought CC parents who would be willing to share their stories with me. I chose two such stories to include in The Heart of a Mother because I wanted others to see why someone would choose that route. I couldn't imagine it myself until I spoke to people who did it. I needed their stories in their words.

I received some very angry letters regarding those two essays. Many people felt they were not in keeping with the rest of the book, but I felt they were. I also received some letters of encouragement for including those essays. It helped some people to understand all three options more clearly.

In the revised HLHS Handbook (which I am currently working on), there will be an essay by a mother who chose CC. I will also be totally rewriting that section of the book.

My feeling right now, Shannon, is that the doctors should not even offer compassionate care as an option. I feel very strongly about this. I can understand it 6 years ago, 10 years ago and further back than that. The odds of those children surviving either of the other two options were so slim. But that is not the case now. Now survival rates for the Norwood, at good centers, is 80% and higher -- much higher in some centers. I feel this is an ethical question that the doctors are going to have to work on and I have spoken to a number of doctors in that regard. I have also been to some medical conferences where this very topic has been discussed. It is not easy for the doctors. It is not easy for the parents. This is a very difficult subject to talk about and changes in treatment can be very slow in the medical world.

I feel that what you wrote might echo feelings of other parents who were not quite so eloquent or as brave as you were to write to me. I would like to know if you would be willing for me to include your letter and this response on my website. I have a section called "Letters From Anna" where this would be perfect. It would be nice for people to see how my understanding regarding CC has grown and changed over the years. It would also be nice for people to know about the essays in the book and the fact that others have been willing to tell their stories.

I would also like to invite your husband to share your story. I am currently working on The Heart of a Father and if the dads are interested, we will have an HLHS chapter with essays on all of the options currently available to parents. Thus far, one father has already submitted an essay on the Norwood Procedure. I will not have an entire chapter devoted to HLHS, however, without essays regarding transplant and CC. I feel there needs to be balance. If your husband is interested in submitting an essay (I will help him if he doesn't know how to get started), please ask him to visit my Writers' Corner -- there is a place there for him to join my listserv. Then he can "meet" some of the other fathers and I can work with him on his contribution.

Thank you so much for taking the time to write to me and for sharing your feelings with me. I hope you will keep in touch and you will let me know if there is any way I can be of service to your family. Your family will be in my prayers.

Sincerely,

Anna Jaworski Baby Hearts Press

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