Parents of children with congenital heart disease

Yeah, finding out is, your life, you, you feel like life has ended when you find out initially. Especially for us we'd had had two years of [my daughters] life not knowing that she was ill. It, it's not going to be easy for any parents but I think maybe when it's diagnosed in pregnancy and things like that you're, you're coming to terms with it before the baby's born and things. Whatever time it is it is going to be, you know, heartbreaking for any parent but I think you have to think that the, the surgeons and things that are, that that are in the hospitals and things these days, you know, they just, the professionalism is just amazing, the technology and things that there are today that you now children, children survive, children survive. Whether, not all children need surgery but there's specialist treatment out there.

Mother' Take each day as it comes and babies are a lot stronger than what you think. And it's something that you have to accept because it's never going to go away and obviously throughout life they're not going to be like every other child because obviously with the cardiac condition there is, you know, certain negatives, the breathing, and the standing and tiredness and things like that. But they are, they're a baby and they're a child at the end of the day and they do everything as normal babies and children do. 

Father' So, newborns now, it's, it's not to give up hope, it's, it's just started. It's traumatic, it's every emotion that you could possibly go through but if you, if you're strong and stay united, yeah, you'll get through it and there are going to be down sides to, to life like there generally is but if you're strong and you have faith then you'll get through it. 

Mother' We never, we never thought that we'd get Daniel to three. Ever. From what we were told in the very, very beginning to even contemplate an hour with Daniel was hard. But each step, each step that you take is a positive step. And it's, each step that you take is a, is a more hopeful step. 
 

Father' And I think at, there's an awful lot that you can do for yourselves in respect that you can, you know, you can sit and talk and help each other through things.  But at the end of the day it's people who, who are qualified.  

Mother' Hmmm 

Father' And if you need more than just your partner, I think, you know, anybody whether it be your liaison sister, the cardiac liaison sister or a nurse, even a doctor, or the cardiologist themselves, they'll all take time. If there's anything you need explaining then they'll take time to do it. They will. If they, I mean if we ever had a problem we made it clear and that, they will tell you to do that as well. Make it clear that if you're not happy with something let us know so that we can do something about it. And they are, they are very good at, at sort of leading you up the right path, if you know what I mean. I mean, there's, there's a lot of things that you, after it, like, like the DLA and forms and things that, that you could be, they could help whether it be financially or, or just, you know, help you with the development of your child. That you should, that, you know, a lot of people don't know about. I mean, we didn't know about 'em, its' just that we've been fortunate enough that we spoke to other parents who have told us. 
 

The only, only other thing that I would say that I have learned from this is to trust my own instincts and that's what I feel as if I've, I've done all along, that when he was, when he was poorly, I did feel as though, I allowed myself to be fobbed off a bit then and I wasn't happy. But then I have learned now to trust my own instincts and if I'm not happy about anything, I am not going to sit and worry about it, I am going to take him down and people can laugh, can laugh at me as much as they like or think, here's that neurotic mum coming. But my son cannot speak for himself, he can't get things sorted out, I have to do it and there's been times when I've thought, gosh, if I was doing this for myself I wouldn't be this forceful, this forceful about things, I would just accept things. But because I'm doing it for him, then I never ever want to be in a position, whereby, I'm thinking, if only I'd been and asked that question. If only I'd done that.