May is an important month for raising awareness, fighting stigma and signposting to sources of support for anyone facing mental health difficulties. In the US, 1st May marks the start of Mental Health Awareness Month, and Mental Health Awareness Week is 9-15th May in the UK.
Families with babies in neonatal care can struggle with their mental health. I certainly did during the five months that my little girl was in hospital. Constantly juggling spending time with your baby on the unit, looking after other dependents and honouring work and other life commitments, whilst potentially living away from home to be near baby, is hugely stressful. And all this on top of the grief, pain, anxiety, fear and myriad of other emotions you experience daily when your baby is sick.
Bliss, a national UK charity, found that parents with a premature baby are 50% more likely to experience psychological distress compared with parents who do not spend time on a neonatal unit. Parents who’ve had a premature baby also experience more stress on their family life. Research also shows that the effect on parents’ mental health doesn’t get better once their baby is discharged from hospital. 80% of parents’ mental health got worse after their neonatal experience.
One of my fellow committee members supporting the Early Birth Association, Julie Lester, has written a very informative and heartfelt piece about how her mental health was affected by her experiences of the neonatal unit. She’s very kindly allowed me to include an excerpt as part of this post:
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 babies being in a neonatal unit. Despite my background in adult mental health services, when it happened to me it felt scary, disorientating, embarrassing and hit me at a time when I was physically weak too. I was lucky as both times I had awareness and insight into what might be happening to me and knew that there was help out there and that I needed to ask for it. I also had the language to express what I thought was going on, and the openness to admit to it all with professionals. 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 need.
Firstborn baby – 2010
My daughter was born very rapidly 7 weeks early and spent a month in special care. 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 and precipitous delivery in November 2010 with a severe postpartum haemorrhage and my newborn daughter was whisked off to special care 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 my baby for the first few times was completely overwhelming. I remember feeling like I’d been thrown into an alien world and nothing really made sense. It was terrifying seeing her hooked up to lots of machines, under strange blue lights, not being able to see her face due to the breathing machine and phototherapy eye mask. 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 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.
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 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. 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 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 what I think was postnatal depression coupled with complete and utter exhaustion. 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 and try to make my peace with it a bit.
Second baby 2014
My son was born 4 weeks early and became critically ill with meningitis and encephalitis caused by a rare virus which can be fatal in newborn babies. It’s 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, I caused it to happen by things I thought, images I saw in my head, or things I did. For example, when his oxygen levels dipped and the alarms went off as I was entering the neonatal unit 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 did. In a way, this was good because 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 my son was. 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 waking nightmare or in some kind of weird and twisted horror computer game in slow motion. When my son had seizures and stopped breathing it 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 clung to my husband’s clothes, nurses arms holding me up, anything, to try to not be swept away by it. Things felt even more bizarre because both my son and my daughter were treated in the same cot space, same room, same neonatal unit, and, strangely enough, attended by the same doctor and nurse who had looked after my daughter when was at her most poorly.
I struggled a lot for probably the first year and half of my son’s life. He still had ongoing health problems and quite frequent hospital readmissions, appointments and tests. I had a lot of anxiety and was also diagnosed with post traumatic stress disorder (PTSD). I got very anxious from noises or lights that reminded me of neonatal unit alarms. 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 worst case scenario conclusions about the health of the kids. It was exhausting.
I arranged for counselling through a charity called Meningitis Now. 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 also spoke to my GP and was started on a low dose of an antidepressant medication which 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. 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.
Huge thanks to Julie for sharing such a personal story in order to support others. You can read the rest of her article here. If you, or someone you know, is struggling with mental health due to having a baby in neonatal care this information from Bliss may be helpful: https://www.bliss.org.uk/parents/support/impact-mental-health-premature-sick-baby/getting-support-mental-health