Amy’s Story

I was pregnant in 2016 with my twin girls Esme and Charlotte, when I was 24 +3 weeks gestation my waters around Charlotte (twin 1) broke.

I was kept on the antenatal ward for seventeen days as both girls were breach and twin 1 was standing on her cord. At 26+6 weeks gestation, I caught an infection. By Sunday evening, I had an emergency C-Section as twin 1’s heart rate plummeted. After the girls were born, I briefly clasped eyes on them, before they were rushed into the neonatal unit. Charlotte was born just under 2lb and Esme just over.

Within that first hour, we were told that Esme was doing well and had shown signs of wanting to breathe for herself but it wasn’t looking good for Charlotte, they were struggling to intubate her. The wait was torturous. I heartbreakingly found my mind kept slipping to planning her funeral – preparing myself for the worst. My heart froze at the sound of any footsteps walking through the delivery suite, knowing that the ones that came to my bay would be informing me whether Charlotte was alive or not.

After a long, agonising wait, the Consultant from the NICU returned and explained Charlotte was doing ok. I have never felt relief like it. After a few hours I was allowed to go and see them.

The girls took it in turns to become poorly. This included, NEC, abnormal seizure like movements and not tolerating feeds. I got to hold Esme at three days old and Charlotte at eight days old but never together as one was always too poorly.  When Charlotte was a week old, we found out that she had had a grade 4 IVH (intraventricular haemorrhage) on the left side of her brain.

At four weeks old, Esme’s lungs collapsed, and she caught a life-threatening infection. It reached a point where the hospital had done all they could for her and it was down to Esme. Two weeks after that, Charlotte’s lungs collapsed too. The girls fought hard and both made great recovery. Esme became the strongest she had ever been and was almost breathing in air.

When Esme was six weeks old, I walked in one Saturday morning, took one look at her and just knew something wasn’t right. She looked pale, she wasn’t moving much and her tummy was really distended. I felt sick to the pit of my stomach and this time knew she wasn’t right.

At this point, I’d never held the girls together. Once we knew our little girl wasn’t going to make it, the nurses enabled one of my dreams as a mother of twins to come true; to hold both my babes safely in my arms. A moment I will cherish forever.

During our time at Leeds General Infirmary, we witnessed baby loss at least once a week. I was terrified but never for one-minute thought it would be us.

We were moved to St James’ in Leeds high dependency unit with Charlotte the same week Esme died. Charlotte was on the road to coming home.

The staff were brilliant and ever so thoughtful and somehow made sure I didn’t have to share a room with twins. We placed a picture of a white cabbage butterfly (one seemed to follow me around at home) above Charlotte’s cot to let people know she was a surviving twin.

Throughout my time on the neonatal unit, I had access to their amazing neonatal counsellor, who I saw once a week. I honestly can’t imagine how I would have coped without her. Not only did she make sure she always had time to listen to what I had to say but she had this great way of completely normalising everything for me and giving me peace of mind. She was there, when I needed her most and attended the meeting when we found out about Esme.

As Charlotte got closer to her due date, there were talks of her coming home. When I first had this conversation with the outreach nurse I had to sit down. I never thought, or could let myself imagine this day coming.

If, I’m honest, one my scariest night on the NICU was when I was ‘rooming in’ with Charlotte, in preparation for her coming home at the end of that week. For the first time in three months, since Charlotte was born, she had no monitors attached to her. I was petrified that something would happen to her and overwhelmed with guilt, “I’m her mum, why am I so scared? Why do I suddenly feel like I don’t know her?” yet at the same time, filled with excitement and adrenaline that I was soon to know motherhood outside of the hospital walls.

My mental health was so fragile I was on the NICU, I felt permanently on edge the entire time I was in there, but the love I had for Charlotte and Esme gave me the strength I needed to just keep going. 

Of course, there were occasions when I did crumble. When I felt like I couldn’t go on and that my world had ended. I’ve lost count how many tissue boxes I went through, the hours I spent hugging the incubators with tears and snot uncontrollably sobbing down my face. But, during those moments, the nurses and consultants caught me. They are some of the most wonderful, talented humans I have met.

I felt safe in there, it was such a strong network and it helped and supported me massively. Even when I return now, it feels like a second home.

Once we were home, I tried so hard to be ok during the day for Charlotte. But, once night time hit, my walls came down and I was broken. It was at night when my grief would surface. I would cry in the dark whilst breastfeeding Charlotte. I so desperately wanted Esme. I clung onto every last smell of her babygrow, I held my hands in the position I held her in and I spent my time googling poems about surviving twins to try help in some way. But I just longed for my little girl.

I received excellent support from my outreach nurse. She would come every week and she just ‘got it’. Weighing Charlotte was such a huge deal for me, and she shared the joy with me every time Charlotte put weight on, no matter how small the gain.

My health visitor was brilliant too, she knew very little about premature babies, but she was there for me, and I appreciated that massively.

There were no local groups for parents who had spent time on the neonatal unit but I managed to get in touch with a retired voluntary Bliss group who put me in touch with a lady who had a surviving twin. Her surviving twin was seven when I met her and she soon became, and still is, my hero.  I also met up with a mother who had lost her baby girl, ten years ago and she massively helped me knowing I wasn’t alone.

After about five months at home I felt constantly sad, my heart ached that bit more and the longing intensified. Each day my mood lowered and to the point where Charlotte couldn’t even pick me up anymore. I would enjoy brief moments of happiness and that was it.

I found the courage to get in touch with my health visitor and self referred for bereavement counselling – I knew this was the right time for me.

One morning I went out for coffee with my friend who told me about Elle Wright from Feathering The Empty Nest and suggested I blog too. So I did. I am now the proud author of This Is My Brave Face. https://thisismybraveface.blog/ Instagram has been an extremely supportive community and network for muddling through life and parenting after loss.

It wasn’t until my maternity leave with Archie that I have realised how isolated I was with Charlotte. There were no silences, gasps or comments, no difficulties answering questions, I could just simply show him off. Charlotte came home on oxygen, weighing 5lb 1oz. I often found baby groups daunting and constantly felt anxious about how to answer ‘normal’ questions, followed by the need to justify my answers.  I would panic when out and about when I heard anyone cough. Playdates were often cancelled as I darn’t take the risk of Charlotte catching anything that would affect her lungs and breathing.

In the February, after Charlotte came home, she caught bronchiolitis. The flashbacks of the hospital and my fears of losing another baby sent my anxiety through the roof.

When I had my son Archie in 2018, my anxiety returned. I would watch them play, be happy, laugh and smile, and I’d bank the image because I was so worried, they would die. My mental health deteriorated and I went to see my GP when Archie was four months old. I self referred for counselling and soon after, began my CBT sessions. I was diagnosed with generalised anxiety disorder. The CBT session and learning about my anxieties have changed my life.

I have lived with worry for as long as I can remember and suffer from generalised anxiety disorder. I had CBT for this back in 2014, but I had a grasp on it. I’m now having CBT again, since having Archie and doing ‘normal’ things my anxiety was triggered and I knew I needed help.

But despite all of this, I’m working hard on my mental health and I’m now a volunteer on the NICU at the Leeds General Infirmary to help other parents and families.

I have so much love and admiration for the parents on the NICU. They’re hard as nails and despite carrying the weight of the world on their shoulders, they put a smile on, they hide that vulnerability and they soldier on. They’re warriors.

Since Esme died, we have founded ‘Campbellinas’, a non-profit organisation to raise money for neonatal units across the Yorkshire region. Our latest campaign is to raise money and awareness for the need of reclining chairs on the unit.

My mental health has been massively affected by my neonatal and baby loss journey, but I’ve been supported whenever I’ve needed it and found what works for me to help me along this windy, rocky road.

We want to say a heartfelt thank you to Amy for being so brave and sharing hers, Charlotte & Esme’s journey with us.


Facts & Figures

79% of parents said a neonatal stay affected their mental health

Did you know, a ventilator costs on average £25,000

Did you know, reading to your baby in the NICU helps their development?

Leo's Neonatal

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