Becky’s Story

I have been a Neonatal Nurse for 13 years now and have supported and helped many families on their journey with their babies no matter the outcome, I specialise in Intensive Care as I always felt that’s where I could make the most difference not only to the baby I was caring for, but the families too.  As a nurse you see so many babies with varying types of illnesses from tiny premature 23 weekers to term babies who have been born sick needing intensive care.

I have always been on that side of the job, the nurse – the shoulder to cry on, the friend, the voice at the end of a phone at 3am, the reassurance that we are doing all we can for you and your baby. Never did I think I would be in a position where I wasn’t the nurse, but instead I was the parent of a very sick baby.

And this is where my story begins.

My daughter Anabelle Rose was born on 7th December 2013, she was beautiful, small at 6lb 8oz but just perfect. We already had my step-daughter, Lily and Thomas 4, and I felt truly blessed to now have a son and a daughter, you could say she was my dream come true. I couldn’t wait to dress her in all things pink and sparkly, she was our little princess, but little did we know 17 hours after Anabelle was born our lives would be changed forever. 

 Anabelle was unexpectedly diagnosed with a rare and complex congenital heart defect and she was immediately transferred to the Paediatric Intensive Care Unit at the Freeman Hospital in Newcastle, leaving our whole family devastated and unsure of what the future was to hold.

Nothing can prepare you for finding out there is something seriously wrong with your child but being a Neonatal Nurse I knew that babies only got immediately transferred up to PICU at the Freeman if it was really serious, and in that moment my heart broke. How could this be happening to us? I just remember my head spinning with a million and one different emotions the main one being fear but at the same time trying to be strong for Glen, (my husband) and not show him my fear. I knew if I did, he would be even more worried than he already was. Being married to a neonatal nurse, Glen knew just how tough my job can get and how I can be affected by the heartbreak which surrounds the work I do. I didn’t want him to see me crumble, I was a nurse, I was prepared in some fashion for what we were walking in to, and I had to keep it together.

Then I wondered what we would tell Thomas and Lilly my stepdaughter? Thomas was going to wake up knowing today was the day Mummy and his baby sister were coming home, he’d left the hospital earlier with Glen so excited, how would we explain, he’s only 4 will he understand? His world was going to come crashing down too and I had no idea how to stop that happening. And even though all of this was all spinning in my head, I was also all at the same time trying to process the seriousness of the situation but without really having any answers yet.

I can still remember walking in to PICU and seeing Anabelle like it was yesterday. She looked so tiny and fragile and so much sicker than I’d realised. She was hooked up to so many machines with wires, where had my baby girl gone?

I’d only been cuddling her a few hours earlier, talking about tutus and ballet lessons, all the hopes and dreams I had for her. How could I now be here? How was I here? Had I done something wrong in my pregnancy? Was I to blame? I wanted so badly to run away, say it was just a bad dream, my heart pounding, but then I looked at her, and she at me, and I just knew I could not fall apart. I needed to be strong for her and my family. I had no idea how I was going to do it, but I was.

Anabelle’s heart defect was eventually diagnosed as Shone’s Complex with the added complication of a rare chromosome abnormality. Shone’s Complex is a rare and complex heart defect meaning multiple abnormalities/defects with the left side of the heart.

Anabelle underwent numerous tests and procedures including three open heart surgeries and being put onto ECMO (a heart and lung bypass machine outside of the body) twice. Unable to breathe on her own without the help of a ventilator, Anabelle also needed a tracheotomy (a hole made through the neck into her windpipe). 

Being on a PICU was vastly different from the neonatal units I had worked on. I was so involved in Anabelle’s care, and being a nurse helped me greatly as I was able to do a lot for her sooner – more than I probably would have if I wasn’t trained. But with that came the stress of the ‘mum’ side of me creeping out every now and again. It was as if I had put my job as her mum on hold whilst trying to care for her with the medical team and trying to understand her condition and what this meant for my daughter.

One day, a nurse recognised just how hard I was finding all of this and suggested I speak to someone. I needed desperately a place to escape and say whatever I needed to and know I wouldn’t be judged. To release that daily pressure in my head, ease the pain in my chest and teach me ways to manage my never-ending anxiety.

Being in that environment every day and seeing the things I witnessed with my daughter, her fight and her sheer determination to survive was not only inspiring but soul destroying.

But, despite it all Anabelle always defied the medical team which me, and her Daddy called her ‘fighting spirit’ always smiling despite all she was going through.

She was a princess in every sense of the word always choosing to do things in her own time, not when the doctors wanted her to but when Anabelle was ready too! She brought us so much happiness and joy, despite us now having to be a family in an Intensive Care unit, with no space to hide, but we made the best we could out of a horrible situation and made her cot space her home, filled with cuddly teddy’s and toys, and family photographs and all her own clothes and blankets, she was always pretty in pink.

We created so many beautiful memories, and we adapted to life the best we could. We read stories, we played, we sang songs, and had lots of cuddles – sometimes it was easier to forget where we were.

Then ironically, after her third open heart surgery, which resulted in her having a near perfect heart, Anabelle suffered complications and she suddenly deteriorated over a few hours in front of our eyes. Time suddenly stopped. How could I be losing my baby girl? Never once in our journey did, I ever give up hope or think she would gain her wings. If love alone could have saved her, she’d have lived forever.

One of my roles in my job as a neonatal nurse was around withdrawal of care and bereavement, and yet that day, the day we said goodbye was the worst possible day.

I always describe that day as like the pictures you see of Time Square in New York, the taxi still and clear but surrounded by a whirl of blurred colours. The doctors and nurses continued to try and fix Anabelle and what had made her deteriorated so fast, yet Anabelle and I were ‘still’.

The nurses had told Glen to go home and that Anabelle was fine, and then all of a sudden, she wasn’t. There I was, alone, watching all of this happen. I was having to make decisions about my daughter’s life by myself. The gravity of that was crushing. I remember so vividly the conversation I had with the consultant “Do you remember when we talked about how far we could go with treatment? We’ve reached the furthest point. What do you want to do?”

All I could say was, “Just keep her alive until her daddy gets here.” I needed Glen, I needed my husband so badly in that moment.

She grew her angel wings in her mine and Glen’s arms on the 9th April 2014, she was just 122 days old.

Still now, I can’t comprehend any of it – and it’s where my PTSD started.

The events which unfolded in front of me won’t ever leave, and I suffered PTSD for a long time afterwards. I needed counselling and medication to help me process, cope and get back on my feet.

I carried on seeing Amy (my counsellor) for a year after Anabelle died, travelling to and from Newcastle every two weeks, returning to the hospital we called home for four months and two days. You would think it would be hard to go back, but in a strange way I liked going back, it felt familiar and comfortable. Without this support I don’t know where I’d be now. It helped my mental health in a big way, teaching me strategies to deal with my anxiety and helped me process my thoughts. Even now, nearly five years later, if I can feel my mental health struggling, I can ask myself ‘what would Amy tell me to do?’

Of course, at times it rears its ugly head again especially around the weeks leading up to her angelversary. I suffer with anxiety, flashbacks, triggers and panic attacks as a result of what we went through during those months.

Nothing prepares you for the pain of losing your child, it’s unimaginable and things seem like they will never ever get better. The world around you continues, yet life for you stops, in that moment everything goes so dark and you wonder how you will survive?

Personally, I have had every range of emotion a mother can feel…anger, desperation, deep sadness, helplessness, sorrow, devastation and heartbreak to name just a few.

But as the days turned into weeks, weeks into months since Anabelle died the overwhelming feeling, I had was one of gratitude, forever grateful that despite everything I had those 122 love filled days making cherished memories with my precious baby girl. It was this along with wanting to keep her ‘fighting spirit’ alive that has enabled me to return to work as a Neonatal Nurse.
 

Since my return to work, I am even more passionate about withdrawal of care and bereavement and making sure we do absolutely everything we can to support that family. I’ve been there, I know the heart-crushing pain when there’s nothing more that can be done and your world crashes around you.

I am an advocate for the families who would not be able to take their baby/baby’s home, families facing end of life care, palliative care and families receiving the worst possible kid of news regarding their babies’ health and future.

I offer much needed emotional support and help to guide families in the best way to help with their poorly babies along with offering guidance on how to support siblings during a very confusing and difficult time. I offer help in how to make beautiful memories and keepsakes with your baby before they grow their wings so that families can take home much needed and loved items to treasure forever.

I have been asked many times since returning to work after losing Anabelle how I cope with the job I do? I cope because I want to be there, I want to be there for other families, because sadly I have been “that” parent, I have walked that horrible, devastating path and by drawing on my own experiences with Anabelle I’m able to support families in desperate need.

Every day I face the same equipment, the same noises, sometimes even same/similar situations to what I went through with Anabelle and more recently I even had to look after a baby with the same name but although some days I still find it very hard I continue to be inspired everyday by my baby girl. When I feel the struggle setting in, I can hear her voice saying, “come on mummy, you’ve got this.” And I find my strength to carry on. I have her hand and footprints on a necklace which I wear everyday to always have her close to me.

At the end of my shift, I go home and snuggle in her beautiful grey bunny which is my little piece of her. It’s what keeps me going, it’s what connects us together despite being world’s apart and it reminds me just how much I need to help others. I love going to see her forever bed, blowing her bubbles to send her floaty kisses and just have mummy and daughter time.

There’s only one chance to get it right when a baby dies, there’s no second chances, no apologies and tomorrow will be different for that family and we can move forward. It stays with us as parents for the rest of our lives. I’m so passionate about making things as ‘right’ as I can for our families because I really don’t ever want anyone to feel the way I did. To suffer that added pain, grieving for your child is painful enough without piling on even more trauma.

My heart broke into a thousand pieces and my life changed forever the day Anabelle died, I miss her dearly every day. Anabelle made a HUGE impact on my life and all of the emotions that come with the grief of losing her are the driving force behind me getting up and going to work every day.

When you lose your child it can be easy to let it get you down, but with the support of my husband, my family, friends and work colleagues I have been able to turn a tragedy into a positive and carry on hopefully inspiring others along the way. With all that said there are still days where I struggle with my emotions. I’m still haunted by the sights I saw, walking her down to theatre and not knowing if she’d come back alive, the sounds of the ventilators and alarms, it’s affected my mental health massively. I’m a different person to who I was before she was born. But I do my best, because keeping her spark alive and helping families is what matters most.

Of course, I would always rather have my precious daughter Anabelle Rose here with me, but I am proud of the person she has made me ad the families I have now helped in her memory. She is my inspiration to never give up and just keep fighting no matter how hard the battle is.

We would like to say a very special thank you to Becky for being so brave and sharing her story.


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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