Prematurity, PTSD and Post-Traumatic Growth

Katie’s story

I gave birth to my daughter in December 2021, 13 weeks early. Prematurity is something that we never expected to be a part of our story. It took a long time to get here but now I feel like it is a part of our journey that I am so proud of. Our family overcame so much trauma fighting with love, support and togetherness at the centre of our battle.

Over the last 12 months or so, I have made it my mission to raise awareness of prematurity, appearing on BBC Radio Live 5, joining up with the Parental Advisory Group (PAG) for Thames Valley and Wessex Neonatal Operational Delivery Network, advising on parent’s views for various initiatives for our local NICU and most recently, joining the wonderful Miracle Moon team as Social Media Manager.

In May, a group of parents who are part of the PAG were asked to speak at an event called Neonatal Stories for Change in front of over 70 NHS professionals. The intention was that our lived experiences would help to highlight areas of best practice or help to inspire change. I put myself forward and was honoured to have been chosen to be a part of this incredible project.

The team formed such a close bond over the four months that we spent preparing for the event, laughing together, crying together and working hard to pull off what became an amazing celebration of NICU and the resilience of NICU families and their babies.

I was given three minutes to focus on a particular aspect of our journey that felt important for me to highlight, and since being diagnosed with PTSD following our ten-week NICU stay, it felt important to touch upon how difficult this journey can be for parents and how we need to be supported at every step of the way. I wanted to share my speech for Prematurity Awareness Month, to remind anyone who is finding things tough right now, that they’re not alone.

In January this year, my world was turned upside down for the second time in 12 months.

We’d just celebrated our daughter’s first birthday and first Christmas at home. I was looking forward to going back to work but I felt lost. And after joining a post-birth identity workshop, I was punched in the gut with a home truth.

My blood turned cold when I realised I had been suffering in silence from PTSD. I could tick off every single symptom described.

I became insular, short-tempered and lacked focus. I constantly relived every moment of our NICU journey and had awful nightmares. I dreamed every night that my daughter was dying and I couldn’t save her. But she was safe in her cot and none the wiser of how hard mummy was fighting to keep her head above water.

But I didn’t know… PTSD was something that only soldiers suffered, or so I thought. I left my job and took the time I needed to work on myself, aided by therapy and medication and I’m pleased to say that I’m now doing so much better and my daughter is blossoming as I watch her defy the odds. But how did it come to this?

In December 2021, I was living my dream life. Six months pregnant, smashing it at work, painting the nursery with my husband and excited to spend our last Christmas just the two of us. But one day our little Jellybean had not been as wriggly as usual. A high-risk pregnancy made me anxious and so we reached out to the Maternity Day Unit. And whoever answered the phone that night saved both mine and my daughter’s lives.

My baby was born by emergency c-section, requiring resuscitation, 13 weeks early. She suffered from severe in-uterine growth restriction due to placental insufficiency and weighed just 1lb 10oz. Severe early-onset preeclampsia robbed me of my final trimester, robbed me of becoming the mummy I dreamed I’d be and replaced her with a mummy that I barely recognised. It robbed my husband of seeing his daughter being born as he wasn’t present for her birth and robbed our family of those golden hours basking in the newborn bubble.

What followed was a ten-week stay at the Princess Anne Neonatal Intensive Care Unit, surrounded by the most incredible team. We didn’t have a name picked for her yet and I couldn’t bear the thought of losing her when was nameless. Desperately searching for a name before it was too late on that first lonely night without my baby in the post-natal ward, I came across her name, which means warrior. That’s exactly what we needed her to be and boy did she live up to her name.

I could sit here for hours and talk about our journey and what would have made it easier on us, but hopefully, these things will become apparent as we move through today. But I’d like you to take away one thing from my story. I’m Katie, a daughter, wife, granddaughter, niece, friend, preeclampsia survivor, PTSD battler and a NICU mum of a 27-week, 1lb 10oz warrior, asking for you to help us make a change so that other mums don’t reach rock bottom before it’s too late. I was one of the lucky ones.

Going first was incredibly daunting but I received such lovely reactions and then got to watch with pride as the rest of the parents bravely shared their own stories, touching on themes of same-sex couples, the need for more antenatal NICU education, military families and sadly, the loss of babies.

I was asked to sum up the section of the conference that focussed on mental health and put out a call to action to all of those who were in a position to influence change with NICUs.

The impact of a NICU stay on our mental health runs through all of our stories. The trauma of arriving somewhere we never expected or even knew existed. The empty cot we never thought about. The separation from our children that we didn’t prepare for, sometimes whilst surrounded by other parents with their newborns, or being tucked away in a side room, isolated without the much-needed support, the impact of the way we are spoken to, referred to and empowered plus so much more.

And so we ask for consistent mental health support for all parents on neonatal journeys, including partners. And not just when we’re in the thick of it but whenever we need it, immediately, a year down the line, or further. Our mind and body keep the score and we should be supported with how we are affected by our baby’s start in life. Early intervention could help to prevent some of the lasting impacts on our mental health. Validation at every step of our journey is key. Co-produce parental postnatal care for neonatal families with us so that less of us fall through the gaps.

After the calls to action were put forward, we received so many incredible pledges from the staff who were present at the event. And I’m so chuffed to say that some changes have already been made as a result of our Stories for Change event.

I suppose what I’m here to say is that when we were in the depths of NICU or when I was in despair whilst silently battling PTSD, attending (let alone speaking at) an event like this would never have even entered my psyche. But through a lot of hard work, therapy, love and support, championing NICU and prematurity has become a part of who I am and something I will strive to do for the rest of my life. Days get brighter, painful memories get duller and you will find a way through. If you’re struggling please, please reach out to somebody - you are a warrior and you deserve better.

Thank you so much to Katie for sharing her story with us. If you’ve had a NICU stay and want to share your journey please reach out to us here if it feels okay to do so.