So does she know shes got a heart condition?

Sort of. She, she knows she went to the hospital and, she, ‘cos her, ‘cos shes got a scar sort of down her chest she knows that, she thinks that’s, ‘cos her heart was broken. She said it’s, her heart was broken so she went to the hospital and, and they fixed it and that’s what’s left. So, also that, as I said to my other daughter, to explain it to her, we just go, she sort of thinks the same that Taylor’s heart was broken and the hospital fixed it and, and shes all better now;

That’s how you, you’ve explained it to her?

Which is, yeah, they’re, they’re both fine with it, you know. As they’re, when they’re old enough to sort of understand properly then, you know, then they’ll know the truth. Well, sort, you know, but so far, yeah. So they, Taylor when she, she goes to the hospital now she don’t sort of know it’s for a, a check up. She don’t sort of understand as such but my other daughter knows that shes going just to make sure that her, her heart is, is still fixed and not broken a little bit;

My husband, he was working nights and he handed in his notice and said that, you know, he couldn’t, he couldn’t carry on because we was like up and down the hospital and, and that. And luckily his, his boss turned round and said that he could work part time instead of, you know, going, handing in his notice basically. So that sort of cut his hours right down, which was good for us. So hes like, he was there, you know, to come to the hospital and we felt it a bit on the money side at first. But then, you know, you just deal with it, so.

Did you find, was there any, was there any government allowances that help with this?

When we first, first found out my Health Visitor at the time said theres a family trust fund, I think it is who come out and they can help with like travelling to the hospital and, you know expenses that way, so she got in touch with them and somebody come round and he said wed get help for travelling to the hospital as well as the food and accommodation and also they gave us money for a holiday as well and also Disability Living Allowance. They said we could get that as well so, which we got that for the first sort of couple of years which was a big, big help at the time.

It may seem like the end of the world but it’s not, you know. You, you do, you can get through it and it’s surprising that how, how the, how the children bounce back. I think they, they do bounce back a lot quicker than actual adults do, you know. It’s amazing how they, the children cope with it. You think they’re, they’re so young and fragile that they obviously, you know, they won’t be able to do it but it’s amazing how they do. They, they seem to cope a lot better than us the parents do with it.

Mother;And then she sort of come off there and I could, I could wean her onto sort of solid food; I think she started solids when she was about, I don’t know, 10 months, 11 months, something like that. Which was a battle, that was. But ..

How was it a battle?

Mother;She, she couldn’t chew at all, you know. She, because she was so used to having the tube, you know, and everything sort of went straight down but when it actually come to, to try and chew she, she couldn’t do it. Saying that even now, I mean, shes, shes 3 now, shes a lot better, theres still some things that she can’t eat. She just don’t chew properly. Or shell chew for a little bit and then shell spit it out, she just gets fed up for chewing, you know, but most of the stuff she can sort of eat now.

Has anyone said why that might be?

Mother;No. Well my Health Visitor, said maybe, said it may be due to the tube because she was tube fed for a while. You sort of persevere really, keep trying different things but I mean she is a lot better but some sort of meat and that she can’t sort of chew properly. Shell try but that’s it.