For those who need a transcribed version of our first episode of NICU, SCBU and you see below.
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[Rachel] Hi there, my name’s Rachel and I work for Bliss, the leading UK charity for babies born premature or sick.
Welcome to the first episode of our brand new podcast, NICU, SCBU, and you.
In this episode, we’ll be talking about neonatal care and parents’ mental health.
We hope to bring you helpful information and support, whether you’re currently on the neonatal unit or at home.
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[Rachel] If you’ve had a baby in neonatal care, you might have found that this experience had an impact on your emotional well-being.
We know how hard it can be to open up about what you’re feeling, to prioritise your own mental health, and get the support you need.
That’s why we’ve been talking to a mental health professional on the unit, along with a group of parents who have all experienced different challenges.
We know that the unit can impact any parent – no matter whether your baby was born at term or prematurely, and no matter how long you have to stay. Whatever you’re experiencing, you’re not alone.
The people we talk to in this episode are very honest and open about what they’ve been through. So before we start, we want you to know that are some stories which you might find distressing. These include descriptions of flashbacks, and feelings of anxiety and depression.
Knowing where to turn if you are struggling can often be the first challenge.
Kati Gray, a psychoanalyst working as part of the neonatal team at University College Hospital in London, explains what parents on the unit have to face.
[Kati] When people have babies, what they expect is that they’re going to take those babies home and begin a life with them, and just the mere fact that every day parents have to walk off the neonatal unit, leaving their precious babies in the care of total strangers, is unbearable.
[Rachel] The feeling of being overwhelmed was one that many parents we spoke to recognised. Here’s Peter, dad to Olwen and Iona who were born prematurely.
[Peter] I mean it’s by far and away the most intense experience of my life.
Like, you’re just in a kind of state of shock and also, you know, moments of elation and moments of teariness and everything.
Yeah, I didn’t really worry about my mental health at all at the time, I was just trying to get on with it and trying to put everybody else first, really.
[Rachel] Nikki and Toni, whose twins Izzy and Jack were born at 27 weeks and five days, describe the atmosphere when they first arrived on the unit.
[Nikki] I think for me, the atmosphere in there, it’s just the beeping, there’s just lots and lots of beepings on the machines.
And even now, if I hear the beeps on, you know, a TV programme or something that’s on a hospital it just sort of takes you right back into that moment.
But also how calm it is. And I don’t think, before I went into a neonatal unit I would have thought it was a calm environment, I would have thought it’d be very busy and hectic.
But everyone is silent and even when things happen, you know, bad things happen where they’re having to rush to babies that have crashed or whatever, it’s just all done so calmly.
[Rachel] Mel, a mum of two, whose youngest daughter Amaya was delivered alone in the hospital bathroom at 24 weeks, remembers what it was like.
[Mel] One of the things I remember first was the intense heat, because of all the incubators.
And also a smell, I don’t know how to describe the smell and it’s even now, if I pop back in to see everyone in neonatal, there’s just a distinct smell that takes you back to being there.
The beeping of machines is scary, there’s lots of incubators there, lots of machines, lots of wires, lots of families looking worn out.
[Rachel] Here’s Peter again.
[Peter] I think what slowly started to crush us really was the kind of long haul and that sort of, like that sense of a marathon that you’re running where you just don’t know where the end is, you know [laughing], it like keeps going and that was, I think, what we found really hard.
[Rachel] Kelly also found the uncertainty one of the hardest things to deal with. She had twin boys, Henry and Stanley, earlier than expected.
[Kelly] I’m just someone that likes to sort of plan ahead and know what’s gonna happen, so I found it quite hard in there, that it literally could change in an instant.
So we just started to realise that you’ve got to just plan ahead for one hour or just take an hour at a time.
And it is amazing how much you adapt, because that is not what I’m normally like at all. So if someone told me I had to do that, I’d think I couldn’t.
[Rachel] Kati tells us that parents often find themselves having to manage the unmanageable on the unit.
[Kati] The paradox of a neonatal unit is the one thing that most relatively normal parents want, is to be given a certain outcome of what’s going to happen to their babies, and it’s the one thing the staff can’t give because things change on a neonatal unit, not even on a daily basis, but on an hourly basis.
Humanly, we long for certainty and on a neonatal unit there is very little of that.
Having said that, what parents can do if, for example, information is important to them, they can make sure that they get regularly updated by staff, they can be present for ward rounds, they can ask for meetings, they are their babies and they are entitled to as much or as little, because some parents do not want to be overwhelmed with lots of medical and technical information, as they wish.
[Rachel] So, how does Kati help parents?
[Kati] I work with all parents in that nobody has to be seen to be not managing, or desperate, or not being the way they ought to be on the unit.
I introduce myself to all parents around the time of the baby’s admission and then they can use me in whatever way they wish throughout their baby’s stay on the unit and indeed, after their baby’s gone home.
Some parents like to speak to me more or less every day, at the cot side, some parents like to make kind of regular appointment every week and come off the unit and speak to me away from the unit.
Some parents like to speak with me when things are particularly difficult or if their baby’s unwell.
[Rachel] The neonatal environment can clearly have an intense impact on parents.
So what does mental health and emotional well-being really look like on the unit? Is there such a thing as a ‘normal’ reaction to your baby being in neonatal care?
[Kati] I think if you could think of most relatively normal human emotions, we get them all on a neonatal unit: anger, rage, helplessness, frustration, misery, despair, hope… and they can all come on the same day.
Parents sometimes expect themselves to always be okay, to always be able to manage, to always… whereas actually, nobody can always be okay when they’ve got a sick or a premature baby and it’s really important that they can try and take that pressure off themselves, to not always be alright and to be able to say to the nursing staff, to the medical staff, 'I’m not having a good day', or 'this isn’t a good time for me to tell me something or do'… Because nobody can always be alright.
There’s no right way to be on a neonatal unit, but in a very general way, people who are fortunate enough to come from secure backgrounds of loving networks of relationships often find those relationships a real help as they negotiate a neonatal journey.
For those who are not fortunate enough to be tied into secure and loving relationships, it can be really precarious.
[Rachel] So what did the parents we spoke to experience? Here’s Tony and Nikki again.
[Tony] I mean, we were talking the other day, weren’t we, about it and I sort of almost gained an obsession with the stats, going in, picking the charts up, learning about certain, you know, what white blood cells and a raise in that and the…
[Nikki] The saturations, heart rate…
[Tony] The saturations, oh I was just, I was just…
[Nikki] Any number.
[Tony] … obsessed with it. I was, I became obsessive. And every day I picked the clipboard up, I probably interpreted it all wrong, but just in my mind if, you know, because everything was, all the observations are all monitored, I was looking for any little glimmer of hope to see improvement, or you know, if the oxygen went down or if the drugs went down, or whatever it may have been, and I became quite obsessive with that, didn’t I? And that’s not, I wouldn’t say that’s really me…
[Nikki] No.
[Tony] …is a normal, is normal me. But that was one way I sort of unintentionally tried to cope with it. And it doesn’t matter if your baby’s been in there a day or two days or six months, it’s when your kid’s taken down to that unit, that is the most, has to be the most frightening thing.
I’ve said this to people before, the amount of weeks in there is kind of an irrelevance. Getting told your baby’s going down there, your heart’s going to beat just as fast as the person who’s been in there six months as one day.
[Rachel] So how can parents recognise the difference between reacting in a way that is to be expected, and needing more support? We asked Kati about this.
[Kati] Some parents arrive on the neonatal unit with pre-existing struggles with their mental and emotional health.
And clearly, if you are struggling, then having a premature or a sick baby is not going to be helpful with any of that, so they are immediately put under extra stress.
Other parents who have never experienced any kind of emotional or mental health struggles can find themselves feeling very anxious, can find themselves not sleeping.
But within the context of having a premature or a sick baby, I would say that is all in the realms of the ordinary.
In fact, I would go so far as to say anybody who is not struggling with having a baby on a neonatal unit is somebody I would be far more concerned about, because I would be wondering how much they’re registering of what’s going on.
Speak to the staff around you, staff on neonatal units are not just there to care for the babies, although that’s their primary role of course, but we always say on our unit, if we have the baby, then we have the family, and it’s really important to care for them.
[Rachel] All of the parents we spoke to described their experiences as a type of trauma, something so unexpected and hard to process.
Kelly told us about flashbacks she experienced, and feeling like she couldn’t process what was happening.
She later got support from her health professional.
[Kelly] I’d wake up in the night in there sometimes, and I’d actually think that I was haemorrhaging right there, like I’d believe that was what was happening to me, and I’d start calling out, and then my husband would be like, 'no, no, Kelly, it’s fine, you’re here, you’re here'.
And then, like the next morning, I’ve got to get up in this shared parent unit and think, oh my goodness, like who heard me doing that, and that sort of like was a really low point and really scary.
And then they had a member of staff there who was particularly looking out for parents’ sort of mental health and emotional well-being and supporting that, and I had a few chats with her and she could see that I was sort of decreasing with that.
So yeah, I was just like crying and couldn’t see how anything was going to get better and I couldn’t fix anything, and I felt guilty and all of my children, all three of them, and whoever I was with, I’d feel guilty on the other two, watching all my family and friends like upset for me, I felt guilty like it was my fault.
And then there was points where I’m saying I just, if it weren’t for my children, I wouldn’t be here, there’s no way out [becomes emotional].
And they recognised it in me and they sort of supported me with that.
But it really helped that they’d say things like - I remember one consultant, I said, 'I don’t, I don’t mean to sound big-headed, but I would say I’m normally quite like someone who understands things and can hold a conversation and remember things and look into things for my children, and I literally feel like I barely remember, every time you do the ward round, I barely remember what you say to me'.
And I remember I used to be like watching his mouth, thinking come on brain, remember this, remember this.
So one day I just told him that and I said 'I’m just struggling because I feel like I can’t remember what you say'.
And he said, 'that’s completely normal, we would expect parents in the NICU with all this trauma to probably remember about 20% of everything that happens'.
And I was like, 'really'? And he said, 'yes, I wouldn’t be saying it otherwise'. So that really reassured me.
[Rachel] Many dads we spoke to found it hard to talk about how they were feeling on the unit. Peter told us about his experience of this.
[Peter] It’s hard to know what is a kind of proportionate response to this scenario you’re in.
You know, because it’s so extreme and so out of the ordinary that feeling sad, feeling angry, feeling impatient, stuff like that, it’s all quite normal.
So it’s hard to separate out at what point you’re kind of suffering kind of damage to your mental health and at what point that’s just kinda normal.
And so for me, I sort of think it was a very delayed reaction and it was probably coming up to their first birthday and you start to think, like, you know, go back in your mind over the kind of stepping stones of the dates and what happened then and kind of with that distance you realise how extreme the situation you were in was, because when you’re in it, that’s your life, just normal.
So it’s only really afterwards you… and you kind of look back at pictures and stuff like that, and kind of think, what like, 'what happened?'
And so I felt, yeah, like about a year later, I, I started to feel very angry over like stupid things and that’s sort of an emotion that was kind of quite unfamiliar to me, because I’m quite a patient person.
So that sort of, realising that sort of out of character behaviour was, was a bit of a shock to me.
And also, I think, I sort of for ages sort of felt like I had to prop everybody up and then, you know, as things settled down again, that’s when you sort of, that’s when it hits you.
You’re kind of like, 'woah' [laughing]. You know, you realise you’re not alright.
And so I started to look for kind of help and support and not really knowing where to turn.
[Rachel] Here’s Tony again. He had a similar experience of feeling like he had to be the strong one. He wants dads to know how important it is to open up.
[Tony] I’m the sort of bloke who normally gets about life, etc, etc, but now I can’t, I just can’t do it.
And it, even if you don’t want to do that to your partner, just a colleague, a stranger online, just whatever, just do it, just make sure you talk to someone, because blokes put it on themselves – absolutely no doubt – that men put it on themselves to be the strong ones and that they try and pick up the pieces and you can’t, you need to pick up the pieces in equal fashion in this, don’t you?
Otherwise it falls apart. So yeah, don’t go thinking you’re being weak in any way, it’s perfectly normal, as I say, and it’s, you know, it should be applauded if you do come out, because that’s, shall we say, that’s the, actually the manly thing to do, come out and be honest about it.
[Rachel] Tony’s partner Nikki, also spoke about how differently they approached their situation as a couple.
[Nikki] Tony has always said that we’re really, really lucky, because we had IVF, which worked the first time, they came out of neonatal and, you know, they’re doing really well.
And he always says that we’re really lucky, whereas I would say actually, we’ve been really unlucky because we couldn’t conceive so we’ve had to have IVF, then we ended up, my waters going, you know, then they arrived really early.
So, I think we’re very different in that way.
[Tony] In that sense.
[Kati] One of the things that I often say to couples when I see them together is, there is no right way to be when they have a baby on a neonatal unit.
They can be however they are, the only difficulty arises when one of them thinks they’ve got the truth.
So when one partner starts to tell another partner, 'you don’t cry', or 'you don’t hold it together', that’s where things run into difficulty.
But parents are individuals like the rest of us, so their way of managing something is theirs. There’s not a right way, but there will be their way.
As to single parents, single parents sometimes have their own network of people – family, friends – and you don’t have to be a parent to appreciate the trauma and the difficulty of being on the neonatal unit.
But there are also groups, there are forums on the internet, there are other parents on neonatal units, we have lots of single parents. So there are resources available for them too.
Being an authentic parent does not mean you have to be in a couple.
[Rachel] Many parents also talked about feeling guilty, like there was something they could have done differently. How common is that?
[Kati] I cannot recall ever meeting a mother on the neonatal unit who does not feel guilty.
And it doesn’t matter that medical staff say this wasn’t you, you couldn’t have done anything, because there’s, I think there’s head knowledge and heart knowledge, and the head knows something and the heart doesn’t believe it.
[Rachel] And how do these feelings play out with dads and partners?
[Kati] They can feel that they’ve failed their partner, or that they can’t find a way of being a good dad.
Or a lot of fathers can find it very hard to be present on the neonatal unit and they will tell me, as though it were a guilty secret, that the day they had to go back to work they were so relieved.
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[Rachel] Grief can be overwhelming, and can leave parents feeling unable to face everyday life.
Kelly’s twin boys, Henry and Stanley, fought so hard together. But sadly, Henry died when he was a month old.
[Kelly] It’s like, it’s like your brain’s trying to feel the two opposite feelings at exactly the same time, which, I don’t know if anyone can do it, but I don’t, I don’t seem to be able to do it.
So like I’ll think, 'oh I’m happy, like Stanley’s reached one, look what he’s achieved, look what he can do'. [becomes emotional]
And then I’m instantly thinking Henry should be there too. And I can almost see what he would look like, what the space he’d be in, so it is hard. Sorry.
It’s like, it’s sort of, it’s like a sort of bitter sweet situation, that’s what, but I think that is actually now what my life’s like and I’ve accepted that I have got a bitter sweet life every day, kind of thing.
[Rachel] Experiencing grief when a baby dies is an expected emotion, at a time which is incredibly difficult for parents.
But what can surprise some people is the grief they might experience if their baby survives. Kati tells us more about this.
[Katy] I think for the vast majority of parents who have severely premature or severely unwell babies, there is always grief.
Because as far as I can see, with every pregnancy there are two babies. There’s the flesh and blood baby and there’s the fantasy baby.
Now, if all goes well, at around nine months when the baby comes into the world, the fantasy baby and the flesh and blood baby will merge around the time of birth, or a day or two later, and all moves on.
If there is illness, if there is disability, if there’s severe prematurity, the flesh and blood baby and the fantasy baby do not match.
And what parents in those situations have to do is grieve the loss of the baby they were expecting, their fantasy baby, and get to know and come to terms with the baby that they have.
And it’s really difficult emotional work, but it is so common.
[Rachel] From Kati’s experience and the parents we spoke to, it is clear that being on the unit can have a big impact on parents’ mental health.
In a recent survey Bliss carried out of almost 600 parents, 80% said their mental health had got worse after their time on the unit.
So what support is available for parents? And what do parents find the most helpful?
Here’s Mel talking about what helped her.
[Mel] We knew there’d be consequences if we didn’t feed the cats, if we didn’t pay our bills. We didn’t at that point stop and think, 'there will be consequences if we don’t look after our own mental health'.
It’s hard to step away from that incubator, it’s hard to walk out of those doors sometimes. But sometimes even just to go for a walk, as silly as that might sound.
I just sometimes just didn’t want to talk to anyone at all. But take even a few minutes out to just, just go, even, or read or- it sounds so, there’s me trying to say this to parents, knowing I didn’t do it myself, and knowing how hard that is.
But being on the other side of it, it’s so, so important.
[Peter] I looked at things like CBT, cognitive behavioural therapy, which can sort of give you techniques as to, to understand your mind better.
[Rachel] Here’s Peter again. He found support in other ways.
[Peter] And I also got a lot of use out of an app called Headspace, which just helps you kind of understand like, things like anxiety and stuff like that.
And there was a particular technique which I found really useful, where it talks about, it’s called noting, so you sort of say, basically you acknowledge how you feel by sort of labelling that emotion.
So if you’re feeling anxious, just noticing that you are anxious and sort of accepting that actually kind of reduces the intensity of that feeling. And I found that really useful.
Having an extra child was an extra, a kind of strain, because it meant, you know, you’ve got to have food in the house, you’ve to take him to nursery and things like that, but on the other hand, he was the reason I kept going as well, because, you know, he is just a three year old boy and he was excited about seeing his sisters and getting the bus and things like that.
And yeah, I don’t know how I’d have got through it without him in some ways. So on one hand it was a, it was an additional kind of factor to consider, but I certainly think he propped us both up, you know, just a three year old boy, it’s pretty amazing really.
[Rachel] So how does Kati recommend parents try to take care of themselves?
[Kati] The place to start, as far as I can see, is with the basics: You eat, you sleep, you stay hydrated, you do not spend 24 hours at the cot side.
Having said that, I don’t think it’s our place as staff to tell parents to go from the cot side.
But people who have very premature or very sick babies are in for the long haul and so it’s a matter of them working out that balance between attending to themselves and being able to be with their babies.
But the basic things of looking after physical well-being as a place to start and in an emotional way there’s the, respecting your own emotions, I sometimes say to parents, try and show yourself a little compassion.
So, rather than criticising yourself for being tearful or thinking it’s really hard to walk on to the unit or thinking 'I’m having a bad day', think, 'of course it’s hard, I’m doing an impossible job here'.
Making a time to do something for yourself, no matter how small. Meeting a friend for a cup of coffee, having a favourite meal when you get home at night. It doesn’t matter. If it gets you through and it helps, do it.
[Rachel] If you’re worried about your mental health, Kati recommends talking to a professional on the unit, or your GP.
Talking about how you’re feeling with someone you trust and feel comfortable with is often a good first step.
We know that not all units have someone like Kati. That’s why we’re bringing her support, as well as the real experiences of parents, to more people through this podcast.
If you’re on the neonatal unit, whatever you’re feeling, you’re not alone.
You can read more of the parents’ stories that you’ve just heard on our website, as well as finding more information about how you might be feeling, what support might help you, and how you can look after yourself.
If you’ve found this podcast helpful, please share it, like it and review it, to help us reach more parents.
Details of all Bliss’ work for premature and sick babies in the UK can be found on our website – bliss.org.uk
Thank you for listening, and see you again soon. We’ll leave you with one last thought from Peter.
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[Peter] I think it is amazing to see how powerful a one pound baby is, you know, they’re so small.
And I remember my wife first held one of them, she said, 'I expected her to feel kind of more brittle in a way, she didn’t, she felt like really strong'.
And, you know, they are kind of really programmed to fight their way through.
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