If you have Huntington’s or know you are at risk of it and would like to have children now or in future, you may wonder what your options are. In particular, because Huntington’s is a genetic disease, you are likely to be concerned about the possibility of passing on the faulty gene to your children.
If you decide to pursue the idea of having a family, there are a number of different ways this could happen.
Firstly, if you wish to try for your own biological child, you could:
PGD is a kind of IVF; a procedure where a woman usually takes drugs to enhance egg production, then the eggs are removed from her ovaries and fertilised with sperm to create embryos in a laboratory. These are then returned to the woman’s body in the hope of a pregnancy.
In the case of PGD, after the fertilised embryos have developed for a few days, one or two cells are removed from each one. The genetic material (DNA and chromosomes) from the cells are then tested for a particular disorder, in this case Huntington’s. Up to two unaffected embryos are then transferred into the woman’s uterus. If the pregnancy is successful, the baby should not be affected by the disorder it was tested for.
Another way you could conceive a child is through donated eggs, sperm or embryo. This means the child is not genetically related either to you or to your partner, or - in the case of a donated embryo - to either of you. It does however give you or your partner the chance to experience pregnancy and childbirth, and to raise a child from the very beginning of life.
Depending on the treatment you need, you may well be looking at assisted conception via IVF, so again, this is not an easy option. But it is a way of avoiding the risk of Huntington’s disease.
As with other kinds of assisted conception, it can be demanding, and funding for cycles to attempt it might be an issue.
For more information about clinics, PGD and other assisted conception techniques, visit the Human Fertilisation and Embryology Authority website. You can also seek information from the Genetic Alliance UK.
Thousands of people in the UK and across the world adopt children of all ages and this is also an option that could be open to you. Local authorities and other organisations, including some charities, match people seeking to adopt with children needing a family. The process is not easy and can take a long time, but it might work for you.
Your health and ability to look after a child will, however, be a factor under consideration, so you would have to explore your own situation and what you are capable of taking on, before becoming an adoptive parent.
More information about adoption is available from several organisations including Adoption UK and your local authority, among others.