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Neonatal Mental Health Awareness week – first blog post from an EBA Committee Member

Published 17th April 2019

Neonatal Mental Health Awareness week – first blog post from an EBA Committee Member

Julie from the EBA Committee has written about how her experiences of having a baby in a neonatal unit effected her mental health below.

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Julie’s experiences are described below:

‘I’ve experienced what I would describe as serious, ‘I’m really losing the plot here and feeling properly lost and scared’ mental health problems twice in my life. Both of these times were triggered by my baby’s being in a neonatal unit. The impact was massive on my mental well-being. The experiences were different each time in how they manifested and exactly what went on in my head at the time, but both left me feeling not myself, not sure which way to go, and needing outside professional help for me to find a way forward.

I did a degree in Psychology & then went to work in NHS adult mental health services. As part of that did I did a lot of extra training in mental health and psychiatric problems & had lots of experience assessing & supporting people with their mental health difficulties. Still, when it happened to me it felt scary, disorientating, embarrassing & hit me at a time when I was physically weak too (after childbirth, postnatal hormones raging, sleep deprivation, anemia, pain etc were all going on too!). I knew mental health problems were nothing to be ashamed of, I have always strongly believed that we all have mental health, or a not, in the same way that we have our physical health, or not. I have always wanted to talk about these things openly and reduce any stigma that continues to exist. However, when I properly really experienced difficulties which felt outside of my own personal norms, where I felt out of control of my thoughts and feelings for a sustained period of time, it still knocked me for six.

I was lucky as both times I had awareness and insight into what might be happening to me & that there was help out there & I knew I needed to ask for it. I knew I had to find a way through & I had a pretty good idea of how to go about it due to my job and previous training etc. I also had the language to express what I thought was going on, & the openness to admit to it all with professionals. This was still very scary at the time as I was used to being the professional. I can’t imagine how much harder and scarier it must be for people whose mental health difficulties take away this ability to recognise what is going on and to be able to express it in a way that gets them the help they so need. I guess that’s why I’m writing this, as part of the first ever Neonatal Mental Health Awareness week (what a fantastic thing the Mum who set this up has done!), because if my ramblings and experiences can help someone else going through it in any way at all, it would be good.

First born baby – 2010

My first big struggle was in 2010 after my daughter was born very rapidly & 7 weeks early & was in SCBU for a month. I was initially in shock. Kind of in shutdown. I couldn’t believe it had happened. I’d got half way through my NCT antenatal classes and was gearing up for a wonderful waterbirth experience at the start of 2011. Instead I had a traumatic & precipitous delivery in November 2010 where I had a severe postpartum hemorrhage, & my newborn daughter was whisked off to SCBU without me being even able to properly see her. No one had warned me this could happen! I was totally unprepared and out of my depth.

Seeing her in SCBU for the first few times was completely overwhelming. I remember feeling like I’d been thrown into an alien world & nothing really made sense. It was terrifying seeing my baby hooked up to lots of machines, under strange blue lights, not being able to see her face due to the CPAP machine & phototherapy eye mask, & the never ending beeps of the machines. The staff were wonderful and explained everything, although I think they had to tell me things again and again as I just couldn’t take it in. The day after she was born, I remember staring blankly at a nurse trying to explain to me how to store expressed breast milk. I just couldn’t grasp what she was saying I felt so out of my body, weak and confused and barely able to stand up (I was also very anaemic at this point!). I didn’t want to know how to store my expressed breast milk, I just wanted to sit by my daughter’s incubator and stare her and try to understand that she was my baby and this had all really happened. The nurses encouraging my husband and I to do her cares, and containment holding through the incubator port holes was a good thing as it encouraged us to try to start bonding with her, but initially it was too much for me to cope with.  I was terrified of hurting her, of making her ill or harming her in someway. I was disconnected and shut down and it felt safer that way. I just wanted to look at her and cry. My husband changed her first nappy and touched her first. I felt like I’d let her down by having her prematurely and then again by not being able to do her cares etc first. Not exactly the start to motherhood that I had imagined! Things only started to shift for me a bit emotionally when I got to hold her for the first time, and I finally had a sense that things might be ok and I could do this.

As the days and weeks went on, I slowly regained my sense of self and my confidence very slowly started returning as I was able to do more and more for my daughter, and I found kangaroo care immensely healing too. I only really felt right with my baby in my arms or tucked down my top. Having to walk out of hospital and leave her there when I was discharged from the postnatal ward felt like leaving a part of myself behind. I remember my husband having to pretty much pull me by the hand down the corridors to get me to leave, and just wailing and wailing when we got home. I often woke up crying in the night as she wasn’t there and phoned the unit to check on her. I spent all day every day in the hospital with her, but having to leave her each night didn’t get much easier. I experienced a lot of guilt about the whole circumstances of her early arrival and how I was unable to bond with her straight away.

After she came home I continued to struggle with that I think was postnatal depression coupled with complete and utter exhaustion ( I spent months sat up all night whilst she cluster fed!). When she was around 6 months old and we were finally getting a little sleep I contacted the Bliss helpline and arranged 6 sessions of counselling, which allowed me to talk through everything that had happened & try to make my peace with it a bit. I’m so glad I did that and this counselling was available to me as when I look back on it all I was definitely struggling a lot.

Second born baby 2014

The next time I experienced significant mental health difficulties was after my son was born, 4 weeks early in 2014, and when he became critically ill with what turned out to be meningitis and encephalitis caused by a rare virus which can be fatal in newborn babies. It is still difficult to think about or talk about what happened then. My experiences at the time were characterised by semi delusional beliefs that I had made him get so ill, caused it to happen by things I thought, images I saw in my head, or things I did, including crossing the threshold of the door of the room he was in in the neonatal unit, as when he had a de-sat and the alarms went off I was convinced I’d made it happen. This time I was familiar with neonatal units, and understood a lot more about what the machines and numbers meant and did.  In a way, this was good as I wasn’t so overwhelmed by the environment, but in another way it increased my anxiety further as I could fully grasp and understand how poorly he was. I think I blamed myself for it all happening as I felt so out of control of everything. I remember repeatedly saying ‘what can I do, what can I do?’  The answer was nothing as he needed the medics at that time and I just had to stand back and watch and try to hold onto my sanity as much as I could.

I had panic attacks, which I didn’t realise were panic attacks when they were happening, and felt out of my body, like I was in a literal waking nightmare or in some kind of weird and twisted horror computer game going in slow motion. My reality was certainly like nothing I had ever known before, even after what I’d already experienced after my daughter’s birth. I think it happening all over again, but worse, with my worst nightmares coming true right before my eyes when my son had seizures and stopped breathing, was too much to process. It was surreal and yet so horribly true all at the same time. I literally felt my legs go from under me, and was clinging to my husband’s clothes, nurses arms holding me up, anything, to try to not be swept away by it. And all I wanted was to swap places with my boy. For it not to be happening to him. Things felt even more bizarre because both my son and my daughter were treated in the same cot space, in the same room in the same hospital’s neonatal unit, being treated strangely enough by the same doctor and nurse who had looked after my daughter when was at her most poorly. I am forever thankful to those amazing ladies for helping both my baby’s, for their calm professionalism, and care and compassion to us at those times. But with my son things got so much worse and it felt like falling into an abyss. That’s what panic and trauma felt like to me, and I don’t ever want to go through it again, nor for anyone else to. But as I’ve come to understand, unfortunately none of us are immune to traumatic things happening, and nor can we control them, all we can do is try to come out the other side and slowly repair the pieces. But those pieces will be forever changed and not quite fit together the same, although I’d like to think they are stronger.

I struggled a lot for probably the first year, year and half of my son’s life. Some times were easier than others, and I managed to somehow cope with two young children at home, including my son who still had ongoing health problems and quite frequent hospital readmission’s and appointments and tests. But it was a struggle. I had a lot of anxiety, this was definitely a bigger problem for me than depression this time round, and I was also diagnosed with post traumatic stress disorder. I got very anxious from noises or lights that reminded me of neonatal unit alarms, and I often couldn’t sleep even when my son was and I was utterly exhausted. I felt constantly on edge, hyper-vigilant to threats, waiting for the next bad thing to happen and like my whole nervous system was tightly wound up, over-wired. I sometimes had thoughts and images, memories I guess, pop into my head that would make me panic. I jumped to worse case scenario conclusions about the health of the kids. It was exhausting. But again I was lucky, I realised what I was going through could be helped, and arranged for counselling through the charity Meningitis Now. I had a lot of sessions, and the counsellor slowly helped me to process, understand and work it all out in my mind. I came to realise that as abnormal as my reactions had seemed and felt to me, they were actually normal, or at the very least understandable, given the highly unusual and abnormal situation I had been in. I was also lucky to be supported by a lovely Health Visitor who gave my son and I extra visits at home, and I spoke to my GP about things and was started on a low dose of an antidepressant medication which also helped me to feel I could cope better too.

Maintaining my mental health is still work in progress, just the same as trying to maintain my physical health, and both are very linked too! I hope that by sharing this story it might go some way to helping others who have been affected by their experiences in a neonatal unit. As amazing places as they are, they are certainly difficult to see your baby in, to see any baby in. Mental health difficulties following any amount of time spent in a neonatal unit are very common. I’m really pleased that we are all talking more openly about how neonatal unit experiences can affect your mental health and I hope that everyone is able to access the help that they might need to manage any mental health difficulties they have as a result of those experiences.’

 


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