Parent reactions: disability diagnosis before birth
This is a transcript of AustralianParents of children with a disability no. 2: they describe their reactions to a pre-birth diagnosis.
Lorraine [mother of six, one with a disability]: It was a real shock, um… I had noticed
that he wasn’t, because I’d had a lot of pregnancies, I had noticed that this was feeling
different. He seemed to be in the same spot all the time. Being maybe, optimistic, I
thought, ‘Oh, maybe it’s twins or something’, because it just felt really different how he
was inside me. So I sort of had a feeling that there was something the matter. But it was
still a really huge shock.
We found out about it at Gerard’s 18 week scan, when I was 18 weeks pregnant. That
was one of the biggest shocks we’ve ever had, because we had five girls already. And
so, um… the person who was doing the scan went really quiet, and you know how they
normally make it a bit of a thing, and they show you all the bits, and this person just
wasn’t saying anything, and we thought, ‘Gee, this is a bit of a dud experience.’ And
then at the end, she just turned everything off and said, you know, ‘This baby’s got a
really serious problem.’ What she actually said was, ‘Most people don’t have babies like
this.’ You know, that was what she actually said, but we found out a lot more
information and decided to actually have him.
I can remember one of the specialists saying, um… ‘You know, he’s not going to thank
you for this, when he’s older.’ And I think, um… I’ve carried a bit of a level of guilt about
that because we made that choice, to have him. And um… you know, not that we would
have done it any different but I’ve actually decided this for him, and I’ve found that to
be just a bit of a guilty sort of thing sometimes… He was a child like any of our other
children, and we’d already had him for 18 weeks, I suppose, we’d carried him. And we
just thought, we can’t not do this, we’d really regret it later. And yeah… we’ve always
been pleased that we had you, haven’t we?
My husband, he was there when we had the scan, and he sort of went into a bit of
denial, like this isn’t really happening. He sort of went back to work, and tried… it was
just before Christmas, and he was busy anyway. And he sort of didn’t want to know
about it. He found it really difficult to talk about it, or to think about it, so that was really
hard for him.
I wanted to talk about it all the time, isn’t that the main um,… female/male sort of
things, I just wanted to talk, talk, talk. He wanted to just, can we just not, you know, he
wanted to go away for a little while so he could think about it, and then he talked about
it later.
Tam [mother of a child with a disability]: It was all those questions, could I have done
something differently, what did I do wrong. I remember crying lots, and… blaming
anyone around me, and having temper tantrums almost. Sort of, I’d go through one day
of thinking, no it’s fine, I didn’t do anything wrong, almost the next day the complete
opposite. Thankfully, we were totally encouraged by the doctors and the nurses, they
were great.
