Life on the NICU: a Clinical Psychologist and mum’s experience

Frankie thought Instagram was just a place where you could look at pretty houses and see what people had eaten for lunch. She didn’t realise it was a community that would help her through some of her darkest days, where she would meet a friend for life and build a passion to help others going through similar experiences of having a baby in a neonatal intensive care unit (NICU).

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I am a Clinical Psychologist, but that doesn’t mean that I am immune to struggles with my mental health. Throughout my pregnancy, I found it hard to attach to the fact that I was pregnant and that I would have a baby at the end of it. I have experienced so much loss in my life, that the idea of actually meeting my baby without having something go wrong seemed unrealistic. I held anxiety in the back of my mind and sometimes in the forefront throughout my pregnancy. At around 29 weeks, my blood pressure spiked. What was supposed to be a routine trip to the hospital for monitoring, ended up being a 5 day stay to try and control my blood pressure. Nothing was mentioned about my baby coming early. A week later after discharge, I was admitted again, but with high protein in my urine. It then quickly escalated, my vision was blurred and doubled, my head was pounding, I had a stabbing pain in my side, but all the while I remained to tell people I was fine. I thought I was fine. I got diagnosed with preeclampsia, but I had no idea what that meant. I got told in the morning of the 8th of October 2019 that I was going to have my baby. 31+1 was the furthest I was going to get. This was also the first time I was told about prematurity and about my baby needing to be in NICU. I knew nothing about what was going to come.

“I struggled to connect with the idea that I had “given birth”, because it did not feel like that”

Birth
I had my baby delivered by emergency C-section. For the majority of the experience of being in hospital, I experienced a level of dissociation. So the memories are hazy, I can’t remember giving birth, or seeing my baby for the first time. I can’t remember having any kind of emotional reaction to what was happening. I was frozen. Some people say that giving birth is the most significant time of their lives, but for me, it’s a moment that hasn’t stayed significant in my mind. Without the pictures that were taken, I don’t know if I would have any recollection of becoming a mother. I struggled to connect with the idea that I had “given birth”, because it did not feel like that. 

NICU
My son was taken away from me and moved to NICU straight away. I didn't get to see him for 12 hours, I didn't get to hold him for over 24. When I walked into the unit, I didnt know which one my baby was. This is not how I imagined becoming a mother would be. We had a number of different complications, mostly around my babies feeding. We stayed in NICU for 5 weeks. I feel like I look back now and it is like the whole experience was filmed underwater. I had been documenting what was happening on Instagram, I’m glad I did, because of how I was dissociating, my memories started to slip quite quickly. Whilst talking about my experiences on Instagram, I started to connect with other parents who were also having their babies at the same gestation and who had spent time in NICU.

“We saw a gap in reaching out and building a community of parents who had been through the NICU”

The power of the internet
I met a woman called Georgie, she had also had her baby at 31+1 due to reversed end diastolic flow. We started talking on Instagram and we instantly clicked, we then started talking every day! I’m not one to randomly make friends on the internet I thought, but as we got talking, we both realised we had a passion for helping others and saw a gap in reaching out and building a community of parents who had been through the NICU, of talking about common thoughts and feelings and normalising them. We also felt like between us, a Clinical Psychologist and a graphic designer, we could create something special. So we developed a community on Instagram, which is slowly building, we have a group of incredible parents who are so open and reflective about their experiences, wanting to talk and wanting to heal. We run a podcast, a blog, and our Instagram community, with the hope of helping others feel less alone. It has helped me get through some of my darkest days, I met a friend for life and am so grateful that it led to helping others going through similar experiences.