“You feel as though your body has failed you” - Marija’s story

Marija

Marija gave birth to her daughter Lea at 26 weeks. She shares details of her neonatal journey, including her PTSD diagnosis, and offers her advice to other parents.

I didn’t have an easy pregnancy. I struggled with various problems and immense pain, including subchorionic hematoma from eight weeks onwards.

It was causing me to bleed every day and once a week I would haemorrhage and pass clots the size of my hand.

With every visit to A&E I was told I was having symptoms of a miscarriage and to be prepared to miscarry. It was mentally exhausting.

Following more severe pain at 20 weeks, I was told to stay in hospital until delivery, which was heart-breaking as I was separated from my two-year-old daughter the whole time.

I was closely monitored, and after another haemorrhage at 24 weeks, I made the decision to have steroid injections to support Lea’s lungs and magnesium for her brain; the best decision that I made for Lea.

At 26 weeks, I was in too much pain to move. It wasn’t until two days later that my mum came to visit me in the hospital. I remember we were having a conversation and all of a sudden I felt myself gasping for air, then a sudden pain like nothing I could have ever imagined come out of nowhere and I couldn’t stop screaming.

I still have horrible flashbacks about this now. I just knew that this pain wasn’t normal and that if I didn’t deliver Lea then and there, we were both going to die.

I remember being rushed to theatre with my partner with me on 31 July 2022. I remember hearing the doctors rushing to discuss whether to put me under general anaesthesia or to see whether they had enough time for local anaesthesia.

There were 20 doctors in the room - eleven of them were for Lea alone. Before I knew it I was being operated on and I had to beg my partner to block my ears. I didn’t want to hear what was going on and I wanted to block out hearing what I feared most would happen to me and my daughter.

I could feel when Lea was being taken out and the room just went silent. It was as if the world came to a halt and I felt as though I was at a funeral - no one was speaking, no one was saying what was going on. I kept begging to know whether she was okay but everyone was too focused to respond.

I remember my partner trying to look behind the curtain just so he could give me an answer. Before I knew it a lady tapped me on the shoulder and said, “sorry mummy, we are going to have to rush baby upstairs so that she can be placed onto oxygen”.

Marija 2

I didn’t even get a glimpse of Lea, no skin-to-skin, no congratulations. To this day I’m still so hurt that we didn’t get skin-to-skin contact as this was so important to me.

It turned out that I had a placental abruption and my placenta was hanging by the membranes. I was told that if I was five minutes away from the hospital that neither Lea nor I would have survived.

I didn’t get to see Lea until 24 hours later. It was horrible being in the recovery room and seeing everyone else with their babies but I later got moved to a ward with other mums whose babies were on the neonatal unit.

I kept wondering whether Lea thought I abandoned her, whether she was okay, what was going on. I remember my partner took a picture of her for me to help me express colostrum. It was so odd.

It was like taking a picture of a stranger’s baby and telling me it was mine and there was no way for me to verify it because I couldn’t see her when she was born. It felt so unnatural pumping milk for her - I felt like a cow that was separated from their baby and being made to express milk.

When I finally got to see Lea I was so shocked at how small she was. She looked so much bigger on camera but in real life, she was the size of my hand. I kept wondering whether she knew that I was her mother.

We are really lucky that Lea was completely fine. She’s had a few ups and downs on her journey but we are blessed that it’s been nothing too serious. She really is a miracle.

Being on the neonatal unit is really difficult. Lots of people told me to be grateful as it could have been worse but people don’t understand what it’s like in there. Even when your baby is fine you’re constantly reminded that anything can go wrong within seconds, even with the healthiest babies.

I felt like I couldn’t breathe and wouldn’t be able to until I got home. Having to witness the screams from mothers who have lost their babies is something I never want to relive again. People will never understand this journey unless you’ve been through it.

I also felt as though my body had failed me. Even trying to supply enough milk is sometimes like trying to get blood out of a stone – it was so hard because my body hadn’t had the full nine months of pregnancy. It was the final blow to blaming your body for not being able to do anything right.

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Queen Charlotte’s Hospital neonatal unit is amazing. The support from the staff and nurses are truly amazing and they are the most selfless people in this world. They’ve been the best bonus mums to Lea and I’m so glad that I got to share Lea’s first milestones with them.

I’ve made friends and cried tears with other amazing mothers who I know I’ll stay in touch with for life. The way that we have supported each other and helped to take care of each other’s babies is a beautiful bond. It really does take a village to raise a child.

Lea is now being sent home on oxygen. She went from weighing 793g to now weighing 2.4kg. We were nervous about this but we are mentally prepared and have been given so much confidence to be able to handle it by the staff and Bliss.

I suffer from post-traumatic stress disorder and constantly have flashbacks and nightmares but I am receiving help.

I know that things will get better very soon and I am forever grateful for the neonatal team, my mum, my daughter, my partner and my siblings because without them I couldn’t have pushed through.

I’m especially grateful to Professor Lees and his team because if it wasn’t for him, both Lea and I wouldn’t have survived.

Bliss has helped us so much. If you are going through the neonatal experience or have been told you may give birth prematurely, I only recommend speaking to your hospital and reading up or reaching out to Bliss.

Bliss has done such an amazing job of giving facts in a non-frightening way. Their website is so helpful and informative and their social media is an amazing support system without which we wouldn’t have been able to function.

I would advise other mothers to try to appreciate the small things during their NICU stay and to find something they are grateful for each day.

I know it’s easier said than done because of the battles the babies are facing, but I really regret not doing this earlier because I was too focused on what could go wrong.