April 20-25th is Neonatal Mental Health Awareness week.

Scientific research shows, that parents of a premature baby are 50% more likely to suffer psychological distress, compared to those who do not spend time on a neonatal unit. (bliss)

According to Study carried out by Bliss, 80% of parents reported a decline in their mental health, following their time on the neonatal unit.

62% felt they didn’t have access to the psychological support they needed whilst on the unit.

45% of parents didn’t have access to support following discharge from the NICU.

These statistics alone show the extensive need for neonatal mental health provisions not just within the NICU but beyond.

As preemie parents whose mental health was affected by having a premature baby, both Lisa and I can certainly vouch for that.

For me it’s not just about having a provision available, the provisions needs to be fully accessible to those who need them.

My Neonatal Mental Health Experience

When Keagan was born back in 2018, (read our story here) I shook with shock as I was prepared for the emergency section.

When he was delivered, my heart physically hurt and I prayed so hard that he would be OK.

I didn’t want to have to break the news to our boys and families that we had lost our baby.

We hoped, he would be strong enough to pull through and we’d get to live life as planned, as a family of 6.

Lying in the recovery room not knowing if our baby had survived, was a surreal experience. All I could focus on was finding out if we still had our baby or not.

After finally meeting him, I knew I loved him, but the love was masked by fear and sadness. I cried most nights, I felt like I’d failed him. The grief I felt leaving the hospital for the first time without our boy was as if he had died.

Premature baby Keagan ventilated
Baby Keagan Ventilated – The first time mum Stacey saw him.

Expressing in the middle of the night without a baby there was torture. The guilt I felt for not being with him, had a huge affect on my mental health and how I viewed myself as a mother.

The sadness turned to numbness.

I felt no emotions I just did what all preemie mums do, I got up and got on with it.

Doing what was needed, every day, to get our baby healthy enough to come home with us. Going with the motions without any real thoughts or feelings about it.

Then the anxiety started.

The night before he was allowed home, I was able to room in with him at the hospital. I was petrified that I wouldn’t keep him warm so whacked up the heating just to be sure.

Every time he stirred Id attempt to feed him. Fearing he wouldn’t put on weight and this would slow his discharge home.

Luckily, we were allowed home but this just heightened the anxiety.

I became obsessive with checking his temperature and couldn’t sleep worrying about him having to go back into hospital. I would constantly be checking he was breathing and was warm enough.

My family reassured me he was OK, he was safe and happy. This seemed to help calm my obsessive checking and the anxiety about him getting ill again. Nobody though anything was wrong at this point, we just believed I was being a little overprotective.

After a few outpatient hospital appointments, the doctors were pleased with Keagans progress and we were discharged. This also added to the reassurance that he was now going to be OK. And so, we continued life as a family of 6.

All was well in the world, or so we all thought.

Then this naggy, snappy, inpatient, fearful woman emerged.

My older kids started calling me fussy and my husband just thought I was a Moaning Minnie.

It wasn’t until I broke down on Keagan’s first birthday, that I realised something wasn’t right with me still.

I was snappy at the older kids when I thought they were playing unsafely. I’d snap at Dan when he wouldn’t notice things like I had. Feeling like he wasn’t taking their safety as seriously as I was.

All of the busyness that was going on in my head made me exhausted which lead to my Inpatience.

I became detached. I was scared that something bad would happen to the boys that they’d be seriously hurt. Every time the phone rang or my door knocked, I hid. Petrified it was someone coming to remove my children because I’d failed to keep them safe in some way.

I often felt they’d be better off without me. Believing that if I wasn’t here, I wouldn’t feel this way. But, I could never leave them as I feared their fear and not being there to comfort them.

From speaking to my health visitor and self-referring for CBT, I learned this was how anxiety and PTSD had manifested in me.

My brain had become on constant high alert

My Therapist informed me that my actions were the response to trying to keep my boys safe and with me. Something I felt I failed to do when having Keagan Prematurely.

I didn’t feel triggered by Keagan’s birth but it was evident that it had a lasting impact. The feelings and thoughts I had at the time continued to haunt my mind just presented in other situations.

CBT gave me tools to help re-frame my thoughts and have confidence in myself as a mum. However, lack of childcare meant I had to leave the service sooner than I’d hoped.  

I was able to work through my neonatal mental health challenges by leaning further in to my faith and also gaining the support of other preemie parents.

However, I really feel the lack of accessible provision for mothers especially, is something that should be explored.

There are many other suggestions I could make to improve Neonatal Mental Health Services but, the main thing for everyone to recognise is that for some the effects of NICU are long lasting.

They don’t always present in ways that we think they will or within a specific time limit.

No two NICU journeys are the same and neither are our responses to it. But that doesn’t make them any less valid.

We may not notice changes in ourselves but those around us may describe us in ways that are different to usual. This doesn’t mean you are failing; it may be an indication that you just need some support.

Support can be accessed in a variety of ways.

Opening up and talking to someone, can be the first step in gaining that support.

Sometimes, its easier for parents to talk to someone that isn’t connected to their situation, in that case, there are many online support forums that could help.

Ill leave a list at the end of this blog.

Whatever stage of your preemie journey you are at, its ok not to be ok.

Having a child is a huge life event that alone can affect our mental well-being. Add in trauma and unexpected situations and this creates a whole new level of emotional challenges to navigate.

But please if you can take anything from this blog, we want you to know YOU ARE NOT ALONE!

YOU CAN ACCESS ONLINE SUPPORT FROM ALL OF THE FOLLOWING

Our Preemie Support Village, both Lisa and I are active within here and share things that have helped us through our preemie journeys and are both fab listeners too!

Support Group for Preemie Parents
A group for those affected by the birth of a Premature Baby

Bliss

Leo’s Neonatal

Dadsnet Website

PANDAs Foundation

NHS Mental Health Helplines

The Birth Trauma Association

And Sands.