by Gabriella (@bellabella21)
When Gabriella’s baby was born at full term weighing a chunky 9.5lbs, the last thing on her mind was Neonatal Intensive Care. Wrongly associated with premature babies, around 60% of newborns admitted to NICU are born at 37 weeks and above. Despite this, parents of a full term NICU baby often feel left out of the narrative, or as though their sick baby is ‘too big’ for the neonatal unit. In this brave post, Gabriella writes honestly about her experience of full term NICU admission after a positive home birth and subsequent PTSD.
I had heard of birth trauma. Something that happens when your birth goes wrong. I had heard of the NICU. Somewhere you go when your baby is born prematurely. I had no idea that I would be thrown into the world of both these things, despite an incredible birth experience and a healthy, full-term baby.
My beautiful boy was born at home on the evening of Sunday 11th July in the most transformational and empowering birth I could have hoped for. I felt unbelievably powerful, like I could truly do anything. The overwhelming rush of love and triumph as I caught him between my legs and stood up on my living room floor was indescribable, seeing for the first time that I had a son. We named him Jude. I will never forget how I felt at that moment.
He was declared perfectly healthy, began to cry and I remember sharing disbelief at his size when the midwives weighed him – 9lbs 6oz! I couldn’t believe I had done it. I couldn’t believe how lucky I was to have my healthy boy in my arms, and to have had the birth experience I had spent months visualising.
And then a few hours after he was born, when the midwives were still here helping to clean up, things started to take a turn. He didn’t seem to be latching yet, which was unusual at a few hours old. He was making subtle but strange grunting noises and flaring his nostrils. “Perhaps you should drive him to the hospital to have him checked.” And then, “Actually, we’ll call an ambulance.” “It’s here, let me take Jude and get him dressed for you.” “I’ll help you to the bathroom to get you dressed.” “Don’t worry about cleaning the blood from you, we need to go now.” Suddenly, there were four paramedics in my bedroom, crowded around my baby. “Shall I carry him into the ambulance for you?” But none of it was sinking in. He was born healthy. There couldn’t possibly be anything seriously wrong with him.
We arrived at the hospital and I was starting to feel quite faint. Thirteen hours of labour had made me lightheaded and weak – I asked the paramedic to carry Jude into the hospital as I was scared I was going to drop him. This moment would come to haunt me for months afterwards. I wasn’t able to hold him for another 3 days. If I had known this at the time, I’d have never let him go.
Things progressed very quickly once we were in hospital. Jude wasn’t responding how they were expecting him to, and he was whisked out of the room to neonatal care. My partner went with him. I don’t know the full details of what went on during those first hours in hospital and if I’m honest, I don’t want to know. I remember being in the room alone and a doctor coming in. “Are you Jude’s mum? I’m one of the doctors working on him. I just want to update you that we are struggling to stabilise him at the moment. Sorry I don’t have more to tell you. I’ll be back as soon as I do.”
After what felt like a lifetime, I was told I could finally go and see him. I was taken in a wheelchair into the NICU (Neonatal Intensive Care Unit) and wheeled up to an incubator where my beautiful boy was now covered in tubes and wires and monitors. My full term NICU baby. I was in complete shock. Just hours ago, he was at home, in my arms, perfect, and now he was desperately ill. Ventilated. Sedated. On morphine. They weren’t sure exactly what was wrong with him, but he wasn’t able to breathe on his own, and was showing signs of a serious infection. I was told he was very unwell.
All around me I could see tiny, premature babies. They were barely visible in their incubators, so small and delicate. And then here was my big boy. Filling his incubator, the nurses remarked that he was the weight of the two babies beside him combined. It all contributed to my feelings of how wrong this all was. He wasn’t meant to be here.
That week was the most traumatic of my life. I watched my beautiful boy get worse before he got better: multiple attempts at getting canulas into his little hands, doctors squeezing his tiny feet to draw blood samples, him being carried off for a lumbar puncture. I sat alone in a room, hooked up to an electric breast pump as my milk came in. I wandered hospital corridors at 2am when I couldn’t sleep, wondering if he was aware I wasn’t there beside him, consumed with guilt and the feeling I was letting him down. And yet it was also the setting of some of my special ‘firsts’. The first time I fed him. The first nappy change. The first time I dressed him. The first place I sang and rocked him to sleep.
As the parent of a full term NICU baby, I found it hard, and sometimes still do, to understand how our story fits in with the narrative around neonatal care that I often read about. By NICU standards, our stay was extremely short – just one week. I remember taking Jude back for his three month check up and recognising a mum in the lift who’s baby was in NICU before we arrived, and it seemed unfathomable to me that she was still in the relentless, emotional turmoil of visiting her baby there. I feel lucky in so many ways that it was only my reality for seven days. I also know how privileged I am to walk away from the unit with a perfectly healthy baby: no tubes came home with us, no medication, no lifelong conditions.
But the effects of a NICU stay at any gestation are intense and long-lasting, no matter the length of stay. In the days and weeks after Jude was discharged, I existed with an undercurrent of constant fear. Was he going to get ill again? Was I going to miss the signs of something being wrong? I also entered a world of huge guilt. I couldn’t put to the side thoughts that what happened to him might have been my fault. Did I do something wrong in pregnancy, or birth?
In December, five months after Jude was born, I began a course of cognitive behavioural therapy after being diagnosed with PTSD following the events of the week in NICU. As part of this, it was organised by the perinatal mental health team for me to revisit the unit and meet with the team who cared for Jude. It was incredibly triggering to go back; even the distinct sound of the intercom took me straight back to that week. All the smells, sights, sounds that were my entire world for seven days. I got to see the incubator where Jude stayed, and then met with two of the team who cared for him, and asked all the questions I was too shell-shocked to think about when we were discharged. The two most burning for me: ‘was it my fault?’ And ‘how close were we to losing him?’ I was terrified to ask but I had to know. In my darkest moments my mind took me to terrifying places and I needed to understand whether they could ever have become my reality.
For me, that visit was transformational. To go back, and face the place that held all of the memories of the most terrifying week of my life was not only important, it’s been vital to my recovery. I saw for the first time how safe he was there, being cared for by the very best team. It gave me a chance to see that in the fear of that week, we were also cocooned in a bubble with our boy – nothing else mattered, we saw no one else and as Jude began to recover we got uninterrupted time to get to know each other. Yes, it was a week filled with gut-wrenching fear, but I know now that it wasn’t my fault. It was ‘just bad luck’ and I now choose to see that week as my first, fierce act of motherhood. I endured, I listened, I sat, I held his tiny hand through the hole in the incubator, I sang to him, I kissed him, I survived. And so did he. I will be grateful for that fact for as long as I live.
Bliss Charity supports all parents of babies born premature or sick, including those of a full term NICU baby.