Starting a family

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:

  • Try to conceive naturally, and accept the risk of a child inheriting the genetic condition.
  • Try to conceive naturally and, if successful, undergo a test called prenatal diagnosis (PND), to find out if the developing embryo is affected. In most cases, this test is only carried out if you intend to terminate the pregnancy if the embryo is found to have the faulty Huntington’s gene. (Although if you change your mind, this cannot be enforced.)
  • Seek pre-implantation genetic diagnosis (PGD).

Pre-implantation genetic diagnosis (PGD)

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.

  • PGD is the only way for parents to have an unaffected child to whom they are both biological parents - but it is not an easy option.
  • Like all IVF, it is a physically and emotionally demanding process, especially for the woman, and it may not result in a pregnancy. It requires a highly skilled technical team and laboratory set up which means only a few places deliver this service.
  • The NHS Commissioning Board will pay for three cycles of Preimplantation Genetic Diagnosis (PGD) for couples who have a proven genetic disorder and who wish to avoid the birth of an affected child, in accordance with the criteria outlined in Clinical Commissioning Policy: Pre-implantation Genetic Diagnosis, April 2013.

First steps towards PGD

  • You normally need to be referred to a clinic that carries out PGD by your clinical geneticist or genetic counsellor, where you will have an initial clinical consultation.
  • You may wish to check if NHS funding applies in your case. You can also fund the test privately.
  • You will be asked to give consent for treatment including aspects such as storage and use of embryos.
  • Before treatment can start, you will need to agree to some laboratory testing and preparatory investigations (including health history, ultrasound scan, blood tests, semen analysis etc)
  • Preparation time will vary, but on average it will take 5-12 months after the initial consultation before a couple will start treatment. Once in a treatment cycle, the process takes about 9-12 weeks.

Use of donated eggs, sperm or embryos

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.

Adoption

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.