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COVID-19 and an ex NICU Parent’s Perspective

Like many other parents who have experienced neonatal care. I’ve spent the last few weeks thinking a lot about our neonatal journey. There are so many triggers around and some have been harder to cope with than others. My little boy was born at 24 weeks and spent a long time in neonatal care and quite some time on home oxygen. He is 6 now and to be honest we have been really lucky with his physical health for the last few years. Everyone keeps saying kids get off lighter with  coronavirus but my anxiety is still heightened and I have stressed about the implications of him getting it.

I was quite obsessed with the development of coronavirus before everyone else. Initially it was because I was due to go on holiday abroad at Easter, I won’t lie and say I wasn’t concerned about my holiday, we were all looking forward to it and  I did wonder if it would impact on travel and it felt like a big deal.

As February arrived and things got bad in Italy I became fixated on the news and the COVID-19 updates from Europe. I was really worried about what was going to come to the UK. I became obsessed by handwashing before most.

By the end of February I was gelling my hands excessively whilst I was out of the house and so were my kids. This isn’t really new to me, we had been doing this for 6 years. I was obsessed with hand washing and keeping things sterile when we were on the neonatal unit. This continued for a long time after my little boy came home and never really went away. Before the coronavirus I would still wash my hands and arms like I was preparing to perform surgery, if I had used public transport. I still kept a hand sanitizer by the front door, force of habit.

So when I was at events and meetings and there was extra hand sanitiser around coupled with signs to take more care.  I was making full use of it and I noticed funny looks from some people, even those you knew me.

Just because I was used to it it doesn’t mean it didn’t impact me negatively. The constant smell of alcohol gel brought back some pretty painful memories. The constant sore hands reminded me all was not well and that something bad could happen anytime. It felt just like it did in NICU.

I pulled my kids out of school before they closed. My daughter had a cough and I kept her off in accordance with government guidelines and I just wasn’t prepared to take the risk with my little boy. The more news I watched the more scared I was. I felt like the coronavirus was coming for us and I was going to lock my doors and not let it in my house! I was getting frustrated by people going about their business without a care in the world. Were they not watching the news, were they not seeing what was starting to happen in our communities, were they not scared? 

I felt prepared for lockdown, in fact I was relieved when it came. We have done the whole isolation thing before too. During the first year of my little boy being home from NICU, I pretty much isolated me and him. I let very few people into our house and I didn’t let him mix with any others. We had been through so much back then and I was scared to lose him. We knew that a cough or cold could be bad for him and we had many hospital admissions in the months after discharge from NICU. These admissions made me isolate even more. I wasn’t in a good place at that time and I lost a year of my life to fear and anxiety.

Fast forward to 2020 and ‘lockdown’ felt a little bit like that was happening again. The thought of feeling that way again made me even more anxious. I felt sad, and I felt a kind of grief for life before lockdown. It was a feeling I was familiar with. It felt like the grief I had experienced for life before NICU.

I needed my family, my friends and my peers. My support network I had built up over the last 6 years. They were my safety net and I couldn’t see them. I felt completely lost, just like I did in life after NICU.

My anxiety was heightened with the increasing fear of losing someone I loved in the Covid 19 Pandemic. I would go through a cycle of feeling slightly optimistic for our future to feeling like everyone was going to die the next day. Just like I did in NICU.

I looked for comfort in my NICU support network and they got it! They felt it too. It wasn’t just me and straight away I felt better. I was able to talk openly about my irrational thoughts and they validated my feelings for me. Just like they did in NICU.

We’re now 4 weeks into lockdown, a little longer for my family. It isn’t easy for any of us. The coronavirus has taken loved ones and destroyed lives. It fills us all with fear and a sense of the unknown.

The impact on families currently in neonatal care has been devastating. Older siblings can’t meet new babies, parents can’t be together when spending time with their babies, they can’t support each other when they need it most. The staff are fantastic, as always. But they are also stressed. It isn’t easy for them and we recognise. In Greater Manchester the North West Neonatal Operational Delivery Network and neonatal teams are working hard to make things easier for parents. But things are changing daily.

Most of the support that NICU families can usually access has been removed, life is tough for them and the impact on their long term mental health is worrying.

We’re all feeling it, those with babies on the neonatal unit who are having to wear surgical masks when spending time with their baby, during cuddles. Communal areas are closed and they can no longer chat with each other to break up the day and lend a supportive ear. Peer support on the unit isn’t available.

Those with babies and children at home, who have spent time in neonatal care. Some have been told to shield due to vulnerability of their little ones, some haven’t but are doing it anyway because they are scared and they don’t know what else to do! Families need support now more than ever!

NICU communities are rallying around and supporting each other. 

It is what we do!

If you are a parent on the neonatal unit in Greater Manchester, or have left the neonatal unit in the last three years. We are here to offer you support. Find out what we can do to help here.

If you would like to support families at this time find out what you can do to help here.

Find out more about the impact of coronavirus in the neonatal setting and changes in policies here.