Waiting for an MRI in NICU

5 things I want you to know about being a NICU Mum, this #nicuawarenessmonth

In less than four days’ time, my eldest child will celebrate his fourth birthday.

Birthdays are always emotional especially when looking back, I class his birth as one of the most traumatic times of my life.

I recently wrote about how four years it still haunts me.

I didn’t just become a new mum, I became a NICU (Neo Natal Intensive Care Unit) Mum.

It was a title I didn’t ask for and we were part of a club we didn’t ask to join.

I have now spent nearly 4 years writing about our story on this blog, and for other publications and websites.

I have tried to raise awareness of the issues that affected us, I have tried to bring about change but ultimately and I hope I am right in saying I have helped other NICU Mum and CHD (Congenital Heart Defect) parents.

I have tried to process some of the emotions surrounding our NICU experience and use them to do something positive.

I had so much I wanted to say this #nicuawarenessmonth and so far, I have been published on the front page of the Huffington Post Parents Voices (whoop!), guest blogged on Katheryn Stimpson Sleep Coach website, as well as being featured on The Parent and Baby Show Blog.

But, I wanted to really get into it here on my blog.

I wanted to get back to why I started this blog and to honestly confess what it is like to be a NICU Mum and what I wanted you to know this #nicuawarenessmonth.

1.      Not all NICU Babies are premature

Elijah was born at 38+3 weeks gestation, he was a full term but incredibly ill. He was admitted to the NICU and was the only full term baby in his room however sometimes there is a lot of focus on premature babies, and less about poorly full term babies.

As a mum of a NICU baby the common misconception is that he was premature, but 1 in 8 babies are admitted to NICU and not all of them are premature.

Full terms babies in NICU can sometimes be an afterthought or a side note but they and their parents need just as much awareness raised of their time in NICU too.

2.      NICU doesn’t end on discharge

We spend so much time as NICU parents praying for the day the Doctors turn around and say you’re going home. Then when we get home, we are lost, we are in-prepared and fearful.

Going from constant around the clock care and support of the staff, the reassurance of the machines and always having someone to hand to being suddenly alone can lead to another transition which can be hard to adjust too.

3.      Don’t tell me now you are home you can move on

For anyone who has been in NICU regardless of the length is stay can honestly say that just because you’re home doesn’t mean you can suddenly forget the whole thing.

I can remember vividly each and every moment we spent by Elijah’s incubator, the tests he had and coming home without my baby was one of the hardest things I have ever had to do.

I know friends who have spent 2 hours, 2 weeks or more than 2 months in the NICU and no, you just can’t move on so we must stop telling NICU parents this. It can be incredibly damaging.

We must listen, talk and help them process the experience in a healthy way and not pretend like it never happened.

4.      NICU parents need more mental health support

If you knew someone who went through a traumatic event or accident would you leave them too it? Tell them now they are home to forget about it? Leave them without any counselling or support?

That’s exactly what NICU parents are left with. In a recent Bliss Charity Report it stated that not one hospital in the whole of the UK was meeting the national guidelines foe providing mental health care and support for NICU parents.

That’s 1 in 8 babies being admitted, with over 70% of NICU parents saying their mental health was affected by their time in NICU being left without any support or access to trained professionals both in NICU and after discharge.

This #nicuawarenessmonth we need to raise as much awareness of the lack of mental health support on offer for NICU parents and how detrimental this is to a new parent’s wellbeing which can lead to Post Traumatic Stress Disorder, Post Natal Depression, go on to affect subsequent pregnancies and so much more.

5.      We need to talk about NICU

Before I had Elijah I didn’t have the faintest idea about what could really happen when you go and have a baby.

No one told me what life was really like when you have to go behind those double doors in NICU.

We don’t talk about NICU, we don’t show it in the media, we instead rush to erase it from our memories, and push ourselves to move on when we get home.

People feel uncomfortable, they don’t want acknowledge that actually this is what happens to one out of every eight families.

We must talk about NICU, see it in the media, we as NICU parents want to feel represented, supported and most of all we just want to relate to something and feel normal.

Those are the 5 things I want you to know about being a #nicumum this #nicuawarenessmonth in hope that we start a conversation. We reach out to others, we become more educated and we get the changes that NICU parents so desperately need in the form of the mental health support on offer.