Having Healthy Babies

The drive to reproduce and have children is built into everyone. Nearly everyone wants to have children and given a choice, we would like to have healthy children. Those of us affected by VHL would prefer to have children with two healthy copies of the VHL gene.

Even in this modern age, with all the technology available to us, the first thing to remember is that baby-making is never entirely under our control. We can try our best, but there is still some room for chance to happen. In fact, there are so many things that have to happen right that it’s a miracle there are any healthy babies!

VHL is of course not the only concern, but for us it is a big one. Each parent contributes half of his or her genetic material to the baby—one copy from each pair of genes. Each egg or sperm contains one copy of each of 22 chromosomes in the parent’s body and one copy of the sex chromosome. Mothers provide an X chromosome while fathers provide either an X (for a girl) or a Y (for a boy). Thus, even though Henry VIII blamed his many wives for not producing a healthy boy, it is actually the father who determines the sex of the child. That alone is a good example of how little control we have over the genetic makeup of our children.

We should say at the outset that more than half of all pregnancies are unplanned, and many of us had children before any of the genetic testing was available. Every person has an important role in the world and in the lives of those around them, and we welcome every child into the world. Each of us is made up of a random combination of genes and a wealth of experiences, hopes, dreams and choices that make us who we are. Genetics is only one element in the total human being. While it is important, it is not the sole defining factor in who we are.

We have little control over what genes we pass to our children. The most important things we can give them—which are certainly under our control—are love, a firm sense of self-confidence, and the skills to live a happy and successful life.

That said, people often ask: is there any way to make sure that our baby will not have VHL?

At this time, there is no way to inspect the egg or sperm before conception to determine whether this egg or sperm has the perfectly formed VHL gene or the altered gene from the affected parent. The work needed to do that inspection destroys the egg or sperm. There are ways to inspect the embryo after conception but before birth, and to give the parents the choice whether or not to proceed. We leave it to the parents in question to decide what course of action is right for them. We should emphasize here that the parents of this child—the people who will bring this child into the world and make a commitment to raise this child in a loving and nurturing nvironment—those are the only two votes that count on this matter. Even the grandparents may express their opinion, but they do not get to vote. The doctors too can provide data to assist in the decision-making, but they do not get to vote.

At some point, we have to accept the chance we all take in accepting responsibility for this child. The only real choice we have is to accept this package or not. We can make every effort to have a child with two healthy copies of the VHL gene, and we may still have a child with autism, or another serious genetic condition; or a perfectly healthy child might still have a terrible accident.

Babies don’t come with warranties. We get to love them and care for them no matter what.

There are special cautions for women with VHL. Be sure to read the Handbook section on pregnancy and to have a thorough check-up to make sure that you and your doctors are aware of any special health concerns. vhl.org/handbook.

People with VHL have babies in one of several ways:

1.   The old-fashioned way, either by chance or by choice
2.   Prenatal genetic diagnosis, using CVS or amniocentesis
3.   Pre-implantation genetic diagnosis (PGD).

Once a conception has occurred and an embryo is implanted in the womb, the choices are to proceed or not. CVS or amniocentesis can provide information to assist you in making this decision. Couples sometimes choose prenatal diagnosis simply in order to prepare themselves, in the same way that they may choose to know the sex of the child before birth.

A genetic counselor can have a conversation with you about your own particular health issues, risk factors in your family and your partner’s family (more than VHL), and any other questions or considerations you may have. We strongly encourage you to visit a genetic counselor, assemble health and family history information, and make the decision that is right for you in the context of your own ethics and beliefs.

The personal stories shared here will give you a glimpse into the situations others have faced and the choices they have made. These build upon another group of stories we assembled a dozen years ago, before PGD was an option. Please read that series as well to get a more complete picture of the choices people have made to have children in their lives. see "Childbearing Choices" and the index to all our articles on childbearing.

Happiness is a choice. Life happens, no matter what plans we make. We wish you a happy family.

As printed in the VHL Family Forum 19:1, January/February 2011. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.