Taking it all the way – a NICU Mum’s fight by Vicki at The Honest Confessions of a NICU Mum blog

I am a NICU Mum, a title I never asked for but one I was bestowed nevertheless.

When I gave birth to my eldest son in 2014, I never thought 12 hours later I would be watching his fight for his life at the side of his incubator.

Elijah very quickly after birth began to have dusky episodes which saw him admitted to the Neo Natal Intensive Care Unit at the NNUH.

I went from having cosy first cuddles in bed to not being able to hold or feed my child for four days.

I could only touch him via the small hole in the incubator, whilst he was hooked up to multiple machines and wires.

Elijah was diagnosed with a congenital heart defect called Tetralogy of Fallot, he would need surgery to save him life before his first birthday.On day 3 we suffered another blow when Elijah began to have seizures and was later discovered to have suffered a neo natal stroke due to a bleed on the brain. We were told that Doctors wouldn’t be able to determine the extent of the damage and Elijah may be disabled. He may not reach the milestones of walking and talking, only time would tell.

On day 9 we got the news we had been wanting to hear for so long, he was coming home.

I could still smell the ‘hospital smell’, I dreamt about those double doors and heard the machine alarms in my sleep.

Elijah had a successful heart surgery down at Great Ormond Street when he was 6 months old.

When he was 12 months old, I still heard the machines, dreamt about the blue and green bars of the hospital cots.

I was diagnosed with Post Traumatic Stress Disorder when he was 18 months old.

During my time in NICU, I never had anyone offer any support to me other than a few leaflets shoved into my hands.

I was not assessed by a mental health professional once during my time in hospital.

If they did, I am 90% sure I would have been diagnosed

I wasn’t eating and abusing pills during and after our time in NICU as a way of coping.

Despite the number of medical professionals, we had in and out of our house caring for Elijah, I never received one single follow up, one phone call to see how I was doing.

I had suffered one of the most traumatic times of my life as I was left to get over it single handily, alone.

Fast forward three years and I am now in therapy to try and come to terms with the impact our NICU experience truly had on me.

How it affected my first years with Elijah, my subsequent pregnancy and birth.

I can never fault the staff who cared for my son, they were marvels and the staff do an amazing job.

But where is the support for NICU parents?

It is recommended that you are assessed by a mental health professional within your first three days of being in NICU, and have subsequent follow ups during, and after discharge.

When I was in the grips of PTSD, there is no surprise I didn’t want to travel to a support group far away with strangers.

An online group wasn’t enough, I needed to have actual help from a professional.

There have been campaigns like this before, some I have supported, and it pains me to see that this is still a problem.

I recently posted on social media about how NICU still affects me and was blown away by the number of comments from parents who agreed.

There was one theme, no one received any kind of mental health care during or after their NICU stay.

This prompted me to speak to some NHS professionals to try and learn if things have changed since 2014 and if a support system was in place for NICU parents during and after your stay.

So far, I have learnt there is no one dedicated process for NICU parent’s wellbeing.

With my brave army of NICU parents baring their stories and how NICU affected them and the lack of support they received I am demanding change, for a system to be implemented for NICU parents DURING and AFTER NICU. Over 70% of NICU parents will develop PTSD or PND because of their experience, imagine if we could put into place a dedicated support process to help decrease this percentage. To help vulnerable parents during one of the most traumatic times of their lives?

This Mama is taking it all the way. Watch out Parliament, we’re coming for you.

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