Parents’ experiences of neonatal surgery

Michelle and Harry

Michelle: So yes, we went expecting it to be incredibly routine and actually it was not incredibly routine, well it was for a while wasn’t it, so it was, she was very jolly and it was very...

Harry: All the main measurements were fine.

Michelle: It was very...

Harry: But she said those words that you kind of feel the blood drain from your body which is, cos we were joking round with her saying so, you know, just joking around.

Michelle: She was lovely. And she held my hand and it all went quiet.

Harry: Yes, she said, ‘I’ve got to burst your bubble’ and you think ‘Shit now what’s gonna happen what’s she about to tell us.’ And then she just told us what the situation was and I kind of understood what she was saying, but at that point you don’t really know what it means really well is this a serious thing is it a routine thing how common is it, all those kinds of things immediately.

Michelle: And you could see it very clearly on the scan actually you could see his bowel outside of his body and you could, you know, I’m not saying I would have picked up on it had there not been a stenographer so I don’t really know what I’m looking at, it’s all just a blob. But actually, when she pointed it out it was really obvious so his [bowel] was out kind of from, from the get go. And obviously we had, I’d never heard of the condition before I had never experienced anyone who had had it, who had talked about it despite having had two children before and subsequently knowing quite a lot of people who had had children. Just never come across it at all.

Harry: No.

Michelle: And then the rest of the scan was fairly normal it was kind of you know, went through the final bits of it went off to do blood tests and all the usual bits and pieces but we had to come back the next day to see someone in the high-risk team then to kind of re-scan and to talk through what the implications were of what they’d found on that day. So, we obviously had a fairly torrid night [Laugh].

Emma

It gets a lot easier, it’s hard when you first go through it and you’ve got to settle with it or understand it in your own time and you come to terms with it in your own time, no-one can tell you when you can come to terms with something but the more you find out about the conditions the easier it gets because you start to understand what will work for your child and it does get a lot easier. But I would honestly say use the support groups use other mums and speak to other mums and dads that are going through the same situation especially the dad because dads tend to, mums talk, dads tend to stay very quiet the support groups have a lot of dads on and the dads meet and talk and especially the family unit you need someone else that you can talk to that understands the conditions. So, I would say use them, in my opinion, cos they’ve been really good for us.

Amy

I would say to them to be hopeful. I would say to keep that but be realistic. I would say to educate yourself. I would say that you are your child’s best advocate. That’s the best piece of advice that I could give people is that you are that person. You know them best and you will know them best. You’ll get to know them on a different level, you know, you may not be able to hold them every day. But you will know your child and be there for them in ways that you can be there for them. So, for me that was pumping or if that was sitting and reading a story or singing to her at Christmas time, you can be there. You can be there in ways that you may not imagined or may not have dreamed you would and I think that, that was one of the things I, I wrote a little poem before I had her and it was about something along the lines of, this is not a path that you would have chosen. But it’s the path that you were given and to make the most of it. And I think that’s it.

Clare and James

Clare: Yeah, and then I can’t remember whether it was then and there or if we’d, I know we’d sat down having understood what it was and written out the most enormous list of questions and, and I don’t know if it was at that appointment or a subsequent appointment but we took the list of questions in.

James: No, you’re right, I remember.

Clare: And went through them with the consultant and actually again that was another thing that he very patiently sat and went through every single one of those questions, however stupid they were, you know.

James: How many times he’d heard them, no doubt.

Clare: Yeah, and it didn’t.

James: He wasn’t fazed, he wasn’t awkward he was just ‘Okay, let’s do it’.

Clare: And even to, you know, we had questions in there that were kind of, does he even have to have the surgery is there another option, you know, can we wait, can we wait until he’s older, you know, we’ve got him this far now, you know, do, is it of any benefit for him to be bigger and stronger, you know, and all these kinds of things and.

James: I think we even had survival rates, you know, is there a risk of death in surgery. Yeah, it’s not something you want to say but I think it was, we sat down we said, you know, we have to be prepared we’ve got to sit down now and actually consider…

Clare: You know, we needed to understand the position and actually his, his honesty and how forthright he was with us in a very professional, very calm manner was really…

James: Spot on.

Clare: Yeah.

I’m a real expert in my field, we just, you just knew and the confidence that, you know, because you’re handing over your most precious thing to this person who is going to put them under anaesthetic and disappear into an operating theatre with them and you hope they’re gonna come out the other side.

Rebekah

That there’s an end, there’s an end and to try not to let your mind run away with you because there’s no point worrying about something that hasn’t happened yet, it might be a potential but until it happens don’t fester on it and worry about it, wait until it does happen and if it does then you deal with it when it does. It’s the only thing I think if you let your mind run away with you, there’s nothing you can do about it anyway, you’re gonna end up at the same point so just to try and stay really calm and sometimes it might just be deal with each hour at a time, and if you get past that first hour you get into the next and then before you know it it’s the next day so you’re a day down. It’s, yeah I think that’s the only thing really, and it won’t last forever.