I thought Instagram was just a place where you could look at pretty houses and see what people had eaten for lunch. I didn’t realise it was a community that would help me through some of my darkest days, I didn’t think I would meet a friend for life and I didn’t realise that it would build a passion for myself and that friend to be able to help others going through similar experiences.
"It is an experience that changes you" - Frankie's story
After being in NICU for 5 weeks after giving birth to Arlo, Frankie met Georgie, who also had a NICU baby. Together they set up an Instagram account which connects other NICU parents and gives them a place to talk about the impact it has had on them. Read their story here.
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 very 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 pre-eclampsia, but I had no idea what that meant. I got told on the morning 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 a neonatal unit. I knew nothing about what was going to come.
I had my baby delivered by emergency C-section. We had a number of different complications, mostly around Arlo’s feeding. We stayed in NICU for 5 weeks. I was mainly numb throughout the whole experience, 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, without documenting it, I don’t know if I would have many memories at all of NICU.
Whilst talking about my experiences on Instagram, I started to connect with other parents who were also having their babies at the same gestation, who had spent time in NICU.
I met a woman called Georgie (a graphic designer and illustrator), she had also had her baby at 31+1 due to reversed end diastolic flow, meaning that her baby was not getting the blood supply it needed.
Georgie had had multiple miscarriages, she had also experienced loss, uncertainty and anxiety throughout her pregnancy. She had also experienced some struggles with her mental health and speaks openly about her OCD and postnatal depression in the NICU and when she got home.
We started talking on Instagram and we instantly clicked, we then started talking every day!
Now, 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. We wanted to reach out and build 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.
We also wanted to raise awareness of the NICU experience and are passionate about building NICU conversations into mainstream media and are currently doing our best to spread the word so that systems start to understand what it is like to have your baby in the NICU.
So that is what we are doing. We are contacting the media, speaking to health care professionals and getting the word out about NICU - not just about the fact that it is something that happens more commonly than we first think, but also the impact that it can have on parents, both when you are in the NICU and when you leave. It is an experience that changes you and we feel like it is important to talk about it.
We would love to have you along to join our community @miraclemoonuk, share your thoughts, feelings and meet like-minded parents who have been through a similar experience. We are not all in the same boat but were in the same ocean and we can support each other with the way we think and feel about our NICU journeys.
