My eldest child's father was told - when I was 7 months pregnant - that his mother, and several of his aunts/uncles, cousins etc - had been belatedly (some historically) diagnosed with a cruelly degenerative and life limiting neurological disorder (I won't say what it is as it might be too identifying). At the time, the various symptoms and problems they'd had had been attributed to all sorts of other conditions. Back then a predictive test hadn't yet been developed but we knew if a parent had it, there was a 50% chance of it being passed to their child.
We were given this information by a social worker who hadn't realised I was pregnant and who counselled us to 'think very hard before starting a family' so it was very upsetting. As were the following 5 years not knowing whether my ex or my child was a carrier or not. It was always there at the back of your mind, particularly as we watched and dealt with the deterioration of his family's health. By the time a predictive test was developed my ex was desperate to know, one way or the other if he was affected. He was obviously very frightened but not knowing was torturous and he/we felt that it was better to know - and be able to take some control, e.g. by planning accordingly, making lifestyle changes and so on - than carry on not knowing and wondering if every little trip, stumble or peculiarity was the start of 'it'.
We were lucky, because he was found not to have inherited, and therefore our child hadn't either. But 5 years of anxiety was very tough because you simply can't forget or ignore something like that in the back of your head. It's obviously an extremely personal decision to embark on an investigation which might reveal unpleasant and scary news but harsh though it sounds, whether you do or not, won't alter the fact that an individual is predisposed to a particular condition or not and, as with most things in life, it's usually better to have this confirmed sooner rather than later so if necessary, they can benefit from appropriate treatment/counselling as soon as possible and have the opportunity to live their life to take account of what they now know about themselves before it's 'too late' to make choices/changes.
Of course, genetic counselling can also bring good news, as it did for me, and therefore improve your quality of life by lifting a weight from you. It's understandable we worry about the worst case scenario but it can also be a huge relief. Good luck with whatever you decide to do x |
