Speaking Out ~ Living With HD

Marrying & Having Children

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Marrying & Having Children
Chapter 4 Young People At-Risk
Marrying someone at risk
Thinking of marrying someone at risk can pose problems. If you have never seen or even heard of HD, you may try to ignore the risks and possible consequences.
Some of you will feel so frightened that
you break off the relationship almost immediately without going further into the subject.

Learning the real facts and weighing up the risks and what they mean to you, against the quality of the relationship, is the only way a proper decision can be taken.
If you understand the implications and can work out plans for the possibility that your partner both may and may not get HD, then your marriage can be happy and a sucess whetever happens.
After careful consideration, however, you may feel that you do not want to risk having to care for an ill person, or you may particularly want children without having to put them at risk too.
It is difficult to reject someone for reasons that are just a possibility in the future, but unless you are convinced that you can live with the thought or the fact of HD, then it is better and kinder in the long run to decide against the marriage early on.
Whether or not to plan children

Perhaps the greatest problem that young people at risk have to face is the issue of having children. If you do not want to have the sort of predictive test which was discussed in Chapter 2, the decision has to be taken in the dark.
Some people feel strongly that they should not burden a future generation with the risk of HD and therefore decide not to have any children. Others feel equally strongly that they want to lead as normal a life as possible, which includes having children, and that the risk is worth taking.
We should perhaps remind ourselves that not every couple who plans a child will conceive. Overall about 1 couple in 10 cannot conceive and this is nothing to do with HD.
Whether or not to plan children continued

Those that feel that their lives will be incomplete without children may consider some of the following: IVF (in vitro fertilisation); AID (artificial insemination by donor); fostering (couples at risk to
HD are not usually allowed to adopt); becoming a social aunt or uncle; limiting family size to one or two children; having children early so that if the parent should get HD the children would be at a reasonable age by then. Pre-natal testing
has already been discussed in Chapter 2.

Whatever the outcome, the decision is not easily arrived at and needs a lot of discussion between the two people involved. It is a good idea to seek information and the chance to discuss your personal situation with someone who is knowledgeable in the field.
You can be referred by your doctor to a genetic counsellor who will see you, or you and your partner, by appointment. The counsellor will be able to answer your other questions.
This could be a good opportunity for you to talk about your anxieties and perhaps sort out any conflicting or questionable information you have already been given. Some genetic counsellors offer further appointments so that you have the chance to go over again any information you are not sure about, and ask questions which have occured to you in the interval or which you forgot  to ask the first time.

Your own doctor or a clinic will be able to help you with family planning whether permanent (sterilisation) if you are completely certain about the decision not to have children, or temporary until you are ready to make your decision.
You may still feel that you would like to talk more to someone outside the family, if so ask to see a social worker, either from your own Local Services Department or from the hospital where your genetic counsellor is based or where one of your family is being treated.