24/07/2018 17:17 BST | Updated 24/07/2018 17:17 BST

Nearly Four Years On, NICU Still Haunts Me

I struggled to see what he really looked like with the wires that covered his entire body. Instead, I watched my baby fight for his life

Jill Lehmann Photography via Getty Images

Back in 2014, instead of spending the first few days in a newborn fog after the birth of my son like everyone else around me, I held my baby’s hand through a hole in an incubator. I struggled to see what he really looked like with the wires that covered his entire body. Instead, I watched my baby fight for his life in the neonatal intensive care ward.

Nearly four years on, NICU haunts me. I still cannot walk past the double doors in our local hospital without anxiety, panic and dread overwhelming me. I can still hear the machines, the wires and I can still remember the smell of the ward.

One in eight babies born in the UK will be admitted to NICU, just like my son who was discovered to have an undiagnosed heart defect that required surgery, as well as suffering from a neonatal stroke. I was still on the maternity ward in a side room as I was left to get on with it. Other than a few mandatory checks I was left alone. Pills and meals were left on the side in my room, easy for me to abuse as no one checked if I ate my meals, or took my pills. I eventually discharged myself after seven days.

I was in no fit state to be let home, I was not eating, abusing medication and in all senses of the word was traumatised by what was happening to me. Not one trained professional once came to assess my mental health during the time we were on NICU or afterwards. This is despite it being recommended by the British Association of Perinatal Medicine that all parents should have access to psychological and social support including a trained counsellor.

The NICU staff are amazing, they try to help you as much as they can, encourage you to eat, take a break and check you’re okay but that isn’t their job, they are not trained mental health professionals.

According to Bliss Charity, 80% of parents whose baby has been on NICU has said their mental health has suffered as a result. I can concur. I went on to develop post-traumatic stress disorder and my mental health deteriorated even more after discharge.

After we left NICU I just got worse, with no follow-up care (for me) or any outlet to refer to. I was lost. I didn’t know how I should be feeling, was it normal to not be able to move on? To re-live it night after night? To have nightmares or flashbacks? The months after NICU were a blur. I became so low I was suicidal. I look back on that time and feel that my son’s first year was tainted.

After my diagnosis, I started my blog as a way to raise awareness and to provide comfort to those going through the same thing. I began to connect with other NICU parents and it was the same story up and down the country and spanning over a decade: no one had access to mental health support whilst they were in NICU or afterwards.

Every single one of us went on to have further mental health implications whether it be anxiety, panic attacks, PTSD or PND. We all sought help retrospectively, sometimes years down the line, when it should have been provided at the time. I have spoken very vocally about this, and will continue to do so to campaign for the much needed change that is required.

With all of the medical advances such as artificial wombs, growing organs in a lab why are we not fixing this? To me it is simple, it is providing access to psychological support in every NICU ward.

With so much talk of mental health and wellbeing, it is essential that NICU parents’ voices are heard and that they have access to sufficient support on the NICU ward and afterwards to avoid another generation of parents facing what we have.