And you talked about using the Internet to research what was happening in the States …
Yes, yeah.
… have you ever got involved in any of the support groups there, because there are a couple, aren't there?
Yeah.
There are discussion boards and things, aren't there?
Yeah, yeah, we're in touch with a couple of individual families rather than support groups, because the situation is so different there. It's very hard to sort of compare the treatment, but we are in touch with a couple of individual families whose children are quite, in their teens now.
I just very much wanted to know, I felt one thing, as I said to you before, we were robbed of a, the right to imagine his future and I really, it's very interesting for us to talk to families who've got older children and find out, you know, how they're coping and how perhaps psychologically they coped with it as well, you know.
I met one of the Left Heart Matters support group paid for a boy to come over from America, and his family, they paid for the trip for them to come and talk to us. And he's now, he's the oldest surviving child in America, he's 18, hasn't had a transplant yet. He's also like one of the first, the only survivor, I think, out of the first 73 children that were operated on at that time.
But then the aftercare's changed, everything's changed since then, you can't sort of make comparisons. But for me it was so interesting to meet him and ask him how he had coped with it as a child, when he felt he needed to know more, you know, at what stage he needed to be told things and, and that was just, you know, a really worthwhile opportunity.
And to have that vision of him at that age and to hang our hopes on that and think, “Right, well, you know, my son could be like that. He could be one of the ones that gets to 18 without needing anything more than an aspirin occasionally, you know, and let's just think about that.” That was just so important.
And I think even by going to the charity, I don't know that perhaps they, a lot of people are probably, as I said to you, sort of almost the way that I feel, reluctant to give you the nitty-gritty and the ins and outs of the day to day management of it. They're much more likely to say, “Oh you know, yeah. It's, you know, it's been a bit difficult but we're okay now” or whatever, and you don't know.
I mean, I had no idea what to expect. That first year was just, oh, incredibly difficult. We were in and out of hospital with, you know, [son] nearly died several times because the local hospital didn't detect things that were going wrong and you know, we had drug charts everywhere. I was sort of thinking, smiling at the other lady that you showed me with her feeding charts [see CH04 on the site on 'parents of children with congenital heart defects'].
We had a similar thing, drug charts, feeding charts, so complicated. I couldn't leave the house without sterile water to mix his medicines up in and syringes and, you know, it was just so difficult that first year, and we were in and out of hospital a lot. We spent 4 months out of the first 6 in and out, in hospital, at various, you know, going in and out, in and out, in and out.
And we were discharged quite quickly really, after 4 weeks, but lots of set-backs and other surgeries needed, and I just wasn't prepared for that, you know. Nothing anyone said to me sort of really conveyed what, how your life it turned upside down and it's dominated entirely by this. Other children, you know, if there's other siblings, you know, just so deprived of your time and attention during that, that first year.
And we were one of the lucky ones because [son], on the whole, did really well. And another family who were in the next bed to us who was being operated on, whose child was being operated on the day before [son] with the same condition, didn't leave hospital for the first 6 months. They couldn't, because their child was never strong enough to be sent home.
It was a waiting game for them, and they just had to wait for 6 months. 6 months in hospital, just sitting there. I'm sure children with other conditions are, you know, worse but not, no-one said, “Look, what you're deciding to do could mean that you just don't come out of hospital for the next 6 months. Have you thought about where your other child's going to be? Have you thought about how life continues, about how your husband's going to work?” And maybe it's good, because if you did, you'd probably be terrified and you'd never go ahead but …
Well, I was going to say, would it have perhaps made a difference to your decision, do you think if you …?
Probably not, probably not to us. Not to me personally. But maybe other people who are already perhaps juggling other difficulties at home, that might just tip the balance and they might think, “No, can't cope.” |
