Many of the parents we interviewed talked about how valuable and reassuring it was to hear the personal stories of other parents. We asked parents if they had any messages for other parents or words of advice.
The clearest message was to find other parents to talk to, either face to face, or more likely through online forums and support groups. Clare’s son has exomphalos. She advised,
“Find other parents. My absolute number one thing. Read lots of information. But it’s easy to read the doom and gloom stuff….. and that was why I felt really motivated to participate in this study is to kind of share real life experiences because, as I said, you can kind of get the medical side of things. But, actually, the, what it’s like as a, a parent, is really important to find other people who understand.”
Sally-Anne’s clear message was that you are not along, there are support networks out there to help and support you.
Sally-Anne’s clear message was that you are not along, there are support networks out there to help and support you.
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And you’re not alone, because there is always, we’re here as well, you know, you’re never, ever alone, you might feel like it sometimes but you’re never alone. And you know, for the health you know, the health people I’d like then to start, I don’t know put a leaflet out with, you know, with the Facebook with the, with the, you know, like the groups that are on there because there’s always a support network out there, you know, they’ve just got to put the people in touch with us, you know, I mean I will, I have and I will continue to help them, I mean I’ve had people here who have been, you know, diagnosed and they’re pregnant with an exomphalos baby and I just say come down come and meet [son], come and hear [son]’s story because, you know, there is always a light at the end of that tunnel. And if I could have looked, 13 years ago if I could have looked at today I don’t think it would have been half as much heartache and tears than what it was, you know. See so but we’re always here and that you know there is a support network out there for exomphalos and gastroschisis I just think that the consultants need to be pointed to show people that there is the support network because I’d be lost without it and I would.
Zoe said speak to someone else who has gone through it, the support of other mums and dads was second to none.
Zoe said speak to someone else who has gone through it, the support of other mums and dads was second to none.
Age at interview: 24
Age at diagnosis: 22
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Speak to somebody else who has gone through it, purely because it’s not as bad as people make out, I mean it is, it is tough it’s horrible to have to go through it but that support of the other mums and dads that we met was second to none and we’ve since actually learnt that other people at home have gone through it, not the same thing but a similar experience and we didn’t know, and that could have done wonders to us as well so. When we put on the Facebook that [daughter] was born and she was in [children’s hospital], we got a few messages saying oh we’ve been through something similar and that was just amazing to actually have somebody to talk to because they’re like it’s not easy.
Victoria said it was really important to get a support network around you, if you can.
Victoria said it was really important to get a support network around you, if you can.
Age at interview: 31
Age at diagnosis: 31
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Everybody deals with everything differently really I’m quite a wear my heart on my sleeve so I like to talk, I’m a very emotional person I bottle things up, I bottle serious things up and then worry about silly little things really. but I would say, I’d say always try to get as much information from the nurses, you don’t have to, I always found in the end if you’re not happy about something, you need to say it because otherwise I’ve, I’ve gone home from the unit where I’ve not been happy about something that has happened or one of the nurses have upset me and I’ve sat on it and it’s really upset me and I got towards the end where I actually said something and I felt better for saying that cos I knew something needed to be done, or something wasn’t right and I think that instead of them worrying about ‘Oh I don’t wanna say that cos they might…’ you need to get it off your chest. Because you know that’s your baby and you know your baby and you know when they’re not right, they know when they need mummy, you know, so yeah just I don’t know really, it’s hard because everyone deals with it differently so, yeah I found support groups really helpful but not everybody would do that, you know, [Partner], [Partner] wouldn’t speak to, to a support group, he’d be like ‘Oh no I’m not doing that.’ but, you know, just, just try and get a good support network even if it’s one person even if it’s two people, you know, don’t, don’t let people, you know, he’s your baby, your journey people don’t, everybody in their life do not have to be on the NICU unit with you, you know, it’s about you, the dad and the baby and, you have to decide who you want to support you, who’s gonna be great cos you don’t want people making your life harder, so, you know, you need, you need good people around you.
Parents also recommended asking questions and educating yourself as much as you can, from reliable sources, that will be the doctors, nurses and surgeons looking after your baby, but also online sources and support groups. And trust in your instincts as you know your baby better than anyone else.
Amy remembers that the best piece of advice that she was given was, ‘you are your child’s best advocate’.
Amy remembers that the best piece of advice that she was given was, ‘you are your child’s best advocate’.
Age at interview: 39
Age at diagnosis: 33
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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, you know.
Joe’s message was that sometimes mum knows best, and you should trust your instincts. And that you have more strength than you realise.
Joe’s message was that sometimes mum knows best, and you should trust your instincts. And that you have more strength than you realise.
Age at interview: 36
Age at diagnosis: 34
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Think carefully before you take your medical professionals’ view as the only view. Use your gut instinct and I think always live with a bit of faith that eventually one day it will be alright [laughs] I’m still living it. Yeah it is amazing what you cope with that you would never ever have anticipated beforehand that you could cope with. Human strength of will is a phenomenal attribute and you have it in buckets as a parent without realising it. [Tears up].
Several parents stressed that, no matter how much you might want to be by your baby’s side all the time, it is important to look after yourself and take breaks.
Amy said it was very important and healthy to get out once in a while. She didn’t do enough of it, but time on her own was very valuable.
Amy said it was very important and healthy to get out once in a while. She didn’t do enough of it, but time on her own was very valuable.
Age at interview: 39
Age at diagnosis: 33
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To get out once in a while. It’s healthy and it’s something I didn’t do enough of and maybe for me that might have been to see more people outside. I, I found it too challenging but maybe it would have been helpful. I think to really have some time to yourself they put a TV in her room. I watched tons of garbage but it was the time I had on my own [laughs] and it was really, really nice to listen to music and I put things up on the wall. I tried to make it as homely as possible and, and, and I think one of the things I did too was really get to know the medical professions because, you know, the professionals because they were, they’re human and they were really nice people and I got to know them on a different level. And, and it was, you know, it was a really unique time and it was a really scary, scary time. But I think if you can make the most of your experience there and to really reach out to others who have gone through it before you because they’re the experts. They’re the experts, you know, and then on this group, you know, on the social media too there’s adults who have had exomphalos.
Zoe described how vital it was to talk some time out for herself, to feel a little normal for a while.
Zoe described how vital it was to talk some time out for herself, to feel a little normal for a while.
Age at interview: 24
Age at diagnosis: 22
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And the other thing is to actually take time out for yourself like and fortunately baby’s not going to remember what they’ve been through but that’s also a blessing and like we left [daughter] the day after her operation and she was on all that morphine because she just slept all day, we were like right we’ll take a few hours out and we went for a walk in sun and we went for lunch and we remembered what it was like to be normal and we felt so refreshed afterwards it was just incredible to have that time away from being indoors constantly because the only fresh air otherwise is from wherever you’re staying, to the hospital and back and that’s all you’re getting and you don’t need to feel bad about it. Cos we did the first few times every time we left her we felt oh we should be back with her or should we go back now, no, we were like, let’s just chill for another 20 minutes at least and have a cup of tea so. That’s I think that’s vital is to have that time out.
And finally parents were very clear about one thing. It does get easier. Alison’s son had exomphalos as a baby. He had a normal childhood, playing, climbing, throwing, football, sport. He is now healthy, bright man in his 20s. “It’s not an easy road…….but just stick with it, it’s worth it in the end.” Others said, stay calm, just deal with every hour as it comes, and it won’t last forever.
Emma said that while she took a while to settle into things, and come to terms with things in her own time, it gets a lot easier.
Emma said that while she took a while to settle into things, and come to terms with things in her own time, it gets a lot easier.
Age at interview: 30
Age at diagnosis: 28
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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.
Rebekah said that is important not to let your mind run away with you. Stay calm, it won’t last forever.
Rebekah said that is important not to let your mind run away with you. Stay calm, it won’t last forever.
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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. You know, it actually feels like she was never there now, it honestly feels like that and I knew it would and therefore I just keep thinking, you know, it doesn’t feel like it ever happened. But while you’re in it it’s just a bit like ahhhhhh, but you know it’s gonna end, you know I think that would be it.
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