Sally and Tom fell madly in love and married at 19. Knowing that Tom had VHL, and with active pressure from their parents not to have children of their own, they decided to adopt children when the time was right, but in the near term the priority was to finish college. They chose oral contraceptives for now, adoption later.

Jane and Mike at 27 had been married for some years. They wanted to make sure their child would be healthy, but there was then no prenatal test for VHL. They thought about adopting, but also thought a lot about having their own child. Even though there was one gene they really didn't want to pass to this child, they still had a lot of good ones to pass along! They had a child, the "old-fashioned way," and showered that baby with love, good nutrition, and good values.

Margaret at 32 discovered herself pregnant. Her intra-uterine birth control device (IUD) had embedded in the wall of her uterus and become ineffective. She had always wanted lots of children, and wanted to welcome another child, but there were lots of issues. Her husband was very sick with VHL, and moreover had recently had a course of radiation treatment, raising questions whether it might have affected his sperm. She was the sole support of her family: a sick husband and a four-year-old. The gynecologist told her there was also a chance that her uterus could rupture during the pregnancy. She chose to terminate the pregnancy.

Sally, Jane, and Margaret have something in common -- they are all me, at different points in my life. Each time I was faced with the childbearing decision, I was a different person, enmeshed in a different set of circumstances. Today, I sometimes look back and say that I probably could have coped with that second child and it would have been okay. But I'm no longer the desperate, over-stressed person now that I was at 32. Just as we should not judge other people for making decisions other than the ones we feel are correct, we should also not second-guess ourselves for the decisions we made at other points in our own lives.

If there had been prenatal testing in 1970, would I have used it? Yes. Would I have terminated the pregnancy for a positive reading? Probably. In those days I knew only two people with VHL -- my husband and his father -- who both had bad experiences with VHL in an ancient medical era. From all we could see then, VHL was a ferocious disease. Now we know that we were seeing only the tip of the iceberg. Now we know that a change in the VHL gene doesn't necessarily predestine you for terrible things.

Life will happen to us, with or without VHL. Some of us will have better trips than others. VHL is a risk factor, just like the risk factors for breast and colon cancer that you read about in the press. With a change in the VHL gene, you have a greater chance of developing certain kinds of tumors than people in the general population, but nothing is absolute. We still have a chance to change the outcome. With prevention, early detection, and appropriate intervention, people are doing enormously better today than ever before.

I am glad to say that I have a perfectly wonderful son -- a fine young man I wouldn't trade for anyone else in the universe. He has VHL. As he and his wife approach this question for themselves, my pledge to them is to allow them to make the right decision for the two of them, without my interference but with my loving support. Their decision will not be absolute, it will be what it is for the time being, and it may change over time. That is their right. This year they're raising two cats and a dog.

In this issue you will find a variety of true stories depicting the choices we can make as we evaluate the extent to which we want to involve children in our lives. Each one of us will make our own choices. There is no "right" or "wrong" here -- we present this information to you in the spirit of supporting you in seeking the answer which is right for you and your partner at this point in your lives. Whatever opinions you may hear from individuals, from your relatives and friends, and even from your parents -- are their opinions -- to which they are entitled, and which they have the right to voice -- but they need not necessarily shape your own choice. The "right" answer for you is the one in your own heart.

1. The names of the contributors have been changed to preserve their privacy. Our thanks go out to each of them for allowing us to see into their private lives. An index and definitions for these stories appears on page 5. q

As printed in the VHL Family Forum 6:1, March 1998. For permission to reprint, please contact VHL Family Alliance, info@vhl.org.