Having children

Knowing that you are at risk of HD may affect your decision about having a family of your own. Some people decide never to have children at all, whilst others go ahead on the grounds that the children are likely to have many years of normal life before developing the disease (if they get it at all).

Couples at risk to HD may find it difficult to adopt although they may be able to undertake fostering. IVF (in vitro fertilisation) and AID (artificial inseminations by donor) may also be considered.

Your decision to have children may depend upon the results of genetic testing. If testing shows you don’t have the faulty gene, then you can’t pass it on to your children.

If you do have the faulty gene, then your unborn children can be tested to see if they have inherited it. If you do not know if you have the faulty gene, and you do not want to take the test yourself there is a different type of prenatal test which can be performed using linkage analysis.

If you are considering this option, do discuss it at the Genetics Clinic well before embarking on the pregnancy.

Preimplantation Genetic Diagnosis (PGD) offers another alternative to testing for HD in pregnancy (prenatal testing), this is an option for people who have had a positive predictive test, or couples who are at risk to HD, where there is genetic material available from the affected parent. PGD gives a couple the chance of conceiving a pregnancy that should be unaffected by HD. PGD involves the couple undergoing IVF treatment even if they are a normally fertile couple. These embryos are then tested for HD before they are implanted in the woman’s womb. Only embryos without the HD mutation are chosen for replacement. The hope is that the couple will be successfully pregnant with a baby that is not at risk of inheriting the HD gene.