When you think of September what do you think of? The encroaching Autumn, the 3 month countdown to Christmas, back to school and the last few days of the summer holidays?
For me, September means two things; my eldest son’s birthday, and #nicuawarenessmonth. It is a painful reminder of how my son started off his life, how he fought to be here. I am taken back to a time of gut wrenching fear. It is full of bittersweet raw emotion. I am transported back to those double doors, that to this day I cannot go past.
Despite suffering from some complications, we were swept up in the bubble of welcoming our first child and becoming a family of three after Elijah was born. The bubble didn’t last for long, and soon it hadn’t just popped but it had disappeared completely.
We noticed that Elijah had begun to turn purple, then regain his colour quite quickly. It was passed off as perhaps taking in too much milk, getting used to his environment but it continued to happen. At just 12 hours old, I had my baby taken away to be assessed by the Neo Natal Intensive Care Unit (NICU).
He didn’t come out of those doors again for 9 days.
He was diagnosed with a congenital heart defect (CHD) called Tetralogy of Fallot (TOF) which if he lived, would require surgery before he was one. I waddled down to NICU every day to sit by is bedside, to watch my baby now unrecognisable covered in wires fighting for his life. I couldn’t pick him up, feed him, dress him; all I could do was watch. Watch as he began to suffer from seizures which was caused by a Neo Natal Stoke.
For seven days I stayed in a side room on the maternity ward listening to the distant cries of the babies who were with their mums on the wards. I watched them leave one by one, loading their new bundles into the brand new car seats. I walked past them, head hung low, tears rolling down my face with my wash bag in my empty car seat to go home.
For 2 days I left my baby at the hospital with 20 miles separating us. I wondered if he would forget me, if he would even know who I was.
When we left, that was it. We were sent on our way with hospital appointments scheduled in for the upcoming week. But, there was no follow up for us. I became severely depressed, I had no one to talk to, no one we knew was going through this.
I was angry at the world, why was it happening to us? Why had no one offered us help, or support? Why was the world telling us to move on, get on with it and not talk about it anymore?
Looking back I am 90% sure that if a mental health professional had spoken to me before I left the hospital (which the national standard recommend) I would have been diagnosed with a mental illness like many NICU parents before we left. But there was no support, no diagnosis until 18 months later and after one successful open heart surgery down at Great Ormond Street.
I relived our NICU experience via the nightmares, the flashbacks. I didn’t sleep, I didn’t eat and I was severely depressed. I abused prescription pills as a coping mechanism, to try and forget, but you can’t forget.
When Elijah was 18 months old I went to the GP petrified of having my son taken away because I was an unfit mother, I uttered the words ‘I need help’. I was suffering from Post-Traumatic Stress Disorder and once I began to see the light again I began to get angry.
Why was no one helping NICU parents? Giving them a voice? Allowing them to talk about their NICU experience? Why are we being told to move on as if nothing happened? Representing them in the media? Providing them with the national standard recommended mental health support?
It is why I started my blog, why I share my story to help raise awareness, to help other NICU parents and why every September I mark #nicuawarenessmonth and go back to face my demons again. To make sure the 1 in 8 babies and their families that are admitted to NICU don’t have to suffer in silence like myself and thousands of others have.
Babies will continue to be born poorly, or early it is a cruel fact but the least we can do is better educate, support and equip those who do have to go into NICU with what they need to get through it, and look after themselves too.
Vicki Cockerill is a Freelance Content Writer and NICU/CHD Mum to two boys, she authors The Honest Confessions Of A NICU Mum Blog and co-founded the @KnackeredandNorwich Social Club and campaigns for NICU and MMH issues. You can contact her via her blog or social media: Facebook Twitter LinkedIn