Thinking About Kids – a Q&A

Journalist Carol Sorgen talks with Tessa Speller, former hemophilia nurse specialist at the Royal Children’s Hospital in Melbourne, Australia and “Frankly Speaking About Hemophilia” editorial board member.

CS: I’d like to have kids. Is that risky for me?
TS: No, not at all. There is no medical reason men with hemophilia should not have kids.

CS: But is it a risk for my kids?
TS: As long as your partner isn’t a carrier of the hemophilia gene, you can’t pass along the condition to your sons. Your daughters, however, will all be carriers of the gene and any sons they have will have a 50 percent chance of having hemophilia.

CS: Is this a reason for me not to have kids?
TS: Many factors go into the decision to have—or not to have—kids, and concern for your future grandchildren could be one of those factors. Only you and your partner can decide that. But keep in mind that medical advances are being made every day, and that by the time your future daughter has children of her own, there may well be a cure for hemophilia.

CS: How can we tell if my wife carries the gene?
TS: If your partner has a brother, father, uncle, cousin or grandfather with the disorder, then she may be a carrier. If she doesn’t know, a blood test or DNA test can answer that question.

CS: What if my partner does carry the gene?
TS: If you are concerned that you could have a son that would inherit hemophilia, you can explore the option of gender selection, in which embryos are developed outside the woman’s body and then assessed for gender before being implanted into the uterus.

CS: How soon would we know whether our son had hemophilia?
TS: If your partner is a carrier, then a blood test is taken on your newborn son shortly after birth, either from the umbilical cord or from a vein. You may be advised to hold off on some procedures, such as circumcision, until you know whether your baby does have hemophilia.

CS: Should we have genetic counseling?
TS: If you and your partner think she could be a carrier, it’s important that she tell her gynecologist/obstetrician that she may be at risk for having a child with hemophilia. A genetic counselor can not only determine whether she is a carrier, but also answer any questions you have.