Heartbreak and healing – Simone’s story

Baby Terrell sleeping

Simone shares an honest account of what she went through on the neonatal unit and tells us how she’s gone from feeling overwhelmed to empowered.

Throughout my pregnancy I experienced shock and grief. I had extreme morning sickness and at my 23 week scan I was told that my cervix was dangerously dilated so they’d have to do an operation to put a stitch in. I’d never stayed in hospital before and I couldn’t believe what they were telling me. Looking back, I guess this is where I went into shock thinking of the worst case scenario.

The morning sickness made my pregnancy painfully isolating. I’m an independent person and all of a sudden I couldn’t go into work because I was so sick. I didn’t have my colleagues to speak to and I needed my partner more than ever, but he became very distant and our relationship began to break down. That’s when I started to lose myself too.

At 28 weeks, my waters broke. I went into hospital and the doctors operated again to remove my cervical stitch and started preparing me for a possible caesarean.

I spent two days on the labour ward praying to make it to 30 weeks but I didn’t get there. I dilated one night in my sleep to 4cm and awoke to a pain that came over me so quickly it took my breath away.

Tearfully, I called my family in a state of complete shock. I’d had no antenatal classes, no baby shower, and no preparation for this moment.

The room filled with people and I was told: “You are going to have your baby now and we’re going to have to take him away very quickly because he’ll need a lot of support once he’s born.”

I couldn’t process what I was hearing. I felt vulnerable beyond what I thought I could ever be.

Terrell was born after 90 minutes of labour and the doctors held him up before taking him to the neonatal unit. I told them to take him away from me. At that time he wasn’t my child, he was an embodiment of everything I’d suffered. I was scared, I dared not get attached to him.

When I think about this moment I feel guilt, regret and disappointment in myself. I’ve felt the need to overcompensate every day since.

Baby Terrell in incubator

I was taken to the postnatal ward while Terrell’s dad went to the neonatal unit to be with him.

In the postnatal ward I was surrounded by parents with babies. The energy was very positive but I only had a teddy to hold and an empty cot next to me. I decided to make it look more like a room of a mum who had just had a baby. I put the teddy in the cot and tied a balloon to the end. I felt like I had my baby with me spiritually.

The next day I couldn’t step over the doorway into NICU. The fear and shock froze me.

A nurse guided me in. I looked at my baby and it felt good to stare at him, smell him and look at the monitors. I had questions and I started writing things down. I saw that I could get involved because I saw another mum do it.

I wanted to know what the machines did and I observed how to touch my baby. By day two I could open the incubator and touch his leg. Feeling his skin on my fingers reconnected us. I began to realise I had a status in that place – I was more important than the nurses. I came to realise that he was my baby.

On day three his eye mask came off and I could see that he looked like me. I was feeling stronger and I knew this was the strength I needed to have all this time – this is who I needed to be strong for.

I didn’t want to leave the hospital because I wanted to be with Terrell. I created a home for myself in the postnatal ward. The nurses called the psychological team to try and encourage me to leave and that’s when everything came crashing down.

I knew I needed to leave but I didn’t want to go during the day because I wasn’t going to have that moment where I walk down the steps of the hospital with my new baby, like I’d imagined. I discharged myself in the middle of the night and I stood looking back at the hospital crying.

Dsc00252

I arrived at my mums sobbing. She hugged me tight and simply said ‘I know’. This was the first part of my healing.

The next day I went back to the hospital in fresh clothes, feeling stronger. I had my makeup on, I wasn’t wearing a hospital gown and I was showing my son who his mum really is.

On Christmas Day we had our first cuddle. For the first time we were unified, we were a team. The incubator was a temporary safe place for him but in that moment it wasn’t a barrier between us.

I got into a routine with expressing milk, and after nine weeks we roomed in together for two nights before it was time to go home.

My sister picked us up from the hospital and when we got home everything was clean and everyone was there to meet him. They all wanted to hold him because the hospital’s winter policy meant no one but me or his dad could be there – I think this added to my feeling of isolation. Now with everyone touching him I felt really protective.

I was in overprotective mode and I didn’t know how to get out of it. I felt okay if I had something to remind me of the hospital, but when I didn’t I felt vulnerable. I felt that people didn’t understand the risk and associated anxiety I was trying to control. I started to create lists and rotas.

After a year of living in this auto-pilot cycle I realised I was in a deep depression and desperately wanted to break out of it.

I found strength in my belief that when you hit the bottom you can only go up, so I actively looked into joining forums for mums who had been through similar experiences to me and began to realise some of what I was feeling was normal. I started to tell people what I was going through because I knew I needed a support network.

I had met a Bliss volunteer during Terrell’s stay in NICU and I had read Bliss’ booklets. I remembered Bliss’ tranquil turquoise colour and the charity became one of my safe places as no one else fully understood where I’d been.

Terrell is now two and half years old and I have healed significantly.

Now I am able to look back on my experience and have felt motivated to help parents going through the same journey I did. I wanted to get involved with Bliss and there was an opening to volunteer for them at my hospital so it felt like it was a sign. Now I feel empowered.

I want to help normalise this experience for parents, and do it for the best cause ever, because being a parent is such a blessing whichever way it comes to you and Bliss really supported me on my journey of coming to realise this.

Simone and Terrell smiling together now

This story was originally featured in our free magazine, Little Bliss.