Once a diagnosis is made during pregnancy, parents immediately face a choice—do they want to continue with this unplanned journey on a new and uncharted course, or do they want to end it, by terminating the pregnancy? For some the way ahead may seem obvious, but others hesitate for some time.
The parents in this case emphasised that they did not have objections in principle to termination and supported others' right to choose that path. For them, it was a question of giving their baby a chance of surviving, however slim, and of being able to live with themselves in the years to come. They have not regretted their decision to go ahead.
Father: “The whole thing about it has been giving him absolutely the best chance that we could. It's also for our sake. We were given our diagnosis in September, and the baby was due around Christmas time. Now with the two older boys as well, we sat and we thought and we talked about this, and it's, `Well, you know, is it going to be fair on the boys? Are they always going to associate Christmas with losing their brother or having a very profoundly disabled brother? How are we going to cope over the next four months?' And very, very early on we made a decision, or we formed the opinion that the decision we made wasn't what was best for the next four months. It wasn't what was best for the next four years. It wasn't, to an extent, what was going to be best for our two older boys. We knew that we were going to have to look ourselves in the eye in 10, 20, 30, 40 years' time and be able to say to each other, `We gave our son the absolute best chance that we could.' And that's really why I don't think we'd do anything differently. It's been hard.... I went off and read up and looked on the internet and all the various websites. We knew very, very early on after diagnosis that there wasn't going to be a happy ending here. What there could be was a slightly less bad ending. We had to try to salvage something from what was a very, very bad situation.”
The parents explained the relief of arriving at a decision—or, as they sometimes felt, deciding not to make a decision.
Mother: “And we sat down and we talked, and we lay up in bed for hours, trying to get our heads round the whole thing. And I think we'd basically both come to the same conclusion: that we wanted to carry on. And I think that was the first time I'd slept then for like a couple of weeks. And we woke up in the morning, I felt as if a big weight had been lifted off my head. I felt it was all gone and———”
Father: “Just because I think we knew the direction we wanted to go in.”
Mother: “I felt very mixed up and very confused about what to do for the best, and once we'd made up our minds, that was it. `I've made up my mind' and I was going to carry on.... I do feel that the decision we made at the time was very easy. I felt sometimes as if we never really made a decision, we just waited for nature to take its course.”
Father: “Decided we'd let fate sort it out for us; abdicate the decision.”
Mother: “Where I think I would have always felt, `Oh, but what if? What if they were wrong?' or `What sort of quality of life?' or `He could have lived, he could have had this, he could have....'And I would never, ever have known, and I needed to know.”