Sharing stories in order to raise awareness
To validate each baby's life in a respectful way and to keep their memory alive, our Fluterbyes parents have been keen to share their stories and their babies' here.
Hi, I’m Nori and this is my story! Well actually, my full name is Norianwe but nobody could pronounce it correctly so mummy and daddy nicknamed me Nori.
I was born on the 2nd April 2022, at 26 weeks gestation, in Basingstoke Hospital, weighing a tiny 760g. (Definitely not what mummy expected to be doing on a Saturday lunchtime). Because I had turned up extremely early and incredibly tiny, I had to be transferred to a bigger hospital which was better equipped to look after me. So I was off to Queen Alexandra Hospital in Portsmouth.
Day two of incubator life; I decided to give mummy and daddy a big scare. I had developed a bleed in my brain which the doctors didn’t think I would make it through. They rushed all the way to Portsmouth in the middle of the night to see me, but by the time they arrived, I decided to stabilise myself and everything started to look good. Unfortunately, the bleed in my brain went on to cause more problems for me. The consultants discovered that the bleed had damaged both sides of my brain, but they believed it wouldn’t affect me too much growing up, I just might be a bit slower than the other babies. Then when the blood in my brain started to disperse, which is normally a good thing, it ended up blocking my tubes that carried my cerebrospinal fluid around my brain and my spine, which caused hydrocephalus. Apart from all the bad stuff going on, I was doing really well with all my normal baby things like breathing by myself with little help, tolerating my milk and wriggling around a lot.
“Hydrocephalus is a build-up of cerebrospinal fluid in the brain, which can put pressure on the brain causing damage."
So this is what happened next…
At four weeks old, mummy and daddy had to make the extremely difficult decision of putting me onto palliative care after seeing how bad my brain fluid was on my MRI and being told that having an operation now would not fix or improve my quality of life. It was still COVID rules in the hospital and I still hadn’t met any of my family, so mummy and daddy asked for me to be moved back to Basingstoke Hospital. Day 42 of incubator life, I arrived back in Basingstoke. However, when I arrived, the doctors told mummy and daddy that they didn’t believe I would survive longer than a few hours, possibly a few days after I was removed from the ventilator, as I had been back on it a while and my head had grown bigger. But I went and proved them all wrong. I lived for another five and a half weeks. And in that time, I got to do so many normal baby things. I got to meet all of my family, I had several baths (which I wasn’t keen on to start with but they grew on me), I drank milk from a bottle (all 33ml of it every three hours which the doctors thought I would never be able to do), I got to go for walks outside with mummy and daddy, we went out into the garden a lot, I had lots of cuddles with everyone, I had a professional photoshoot done, I had my first haircut, and best of all I got to hang out with all the nurses finding out all the gossip on the ward.
On my last day, I put up one hell of a fight. I battled through 15 hours of rather long apnoea episodes, and even stopped and restarted my heart twice, to prove I wasn’t going anywhere. But in the end, I knew it was time for me to go. I left this world the same way I entered it – on my terms. So on the 14th June 2022, while being hugged very tightly I said my goodbye and went to join my nanny.
Thank you for reading my story and I am so ‘ducky’ to have met you!
Love Norianwe
"One Sassy Little Duck"
(02.04.2022 - 14.06.2022)
Our daughter Everley was born sleeping on the 27th April 2023. Everley was my third baby, our so wanted last baby to complete our family. Throughout my pregnancy with Everley, except an underlying nagging feeling that something seemed not quite right, everything seemed ‘normal’. I went for my 20-week scan and despite having no physical symptoms, I felt very nervous and warned the sonographer of this before I laid down. As she scanned my tummy, I saw my darling girl was completely still and I knew in that moment that she was gone.
I headed to the hospital to be given the first set of tablets to get my body ready to deliver Everley and was supposed to come back in two days time for the second lot that should start labour. We were given all the information around the decisions we needed to make; postmortems, funeral directors and what did we want to happen when she was born. Everyone was so kind, but I remember being so overwhelmed and thinking to myself how are we even having this conversation – this morning I was going to see my baby alive at my scan and now I’m being asked what I want to do with her body after she is born.
I was completely devastated, lost and frightened as we headed home. When I got there, my house didn’t feel like home anymore, I was scared to turn the lights off, scared to be on my own and scared to sleep. I called my bereavement midwife and I remember asking her if they could be wrong, I knew that wasn’t going to be the case but I was so desperate for it to be different. I remember her kindness but complete honesty as she said, ‘no darling, I’m so sorry’. I then remember how she asked me if my baby had a name, I was really shocked at the question as no one had asked me and I hadn’t thought about it – my baby did have a name, but she was meant to be alive. Although it made me panic at the time, after the call I realised this reminded me she was still my baby, she was still my girl and I was still her mummy, however difficult this was going to be.
My midwife arranged for us to go to the hospital that day instead, as she thought they may be able to give me the tablets to bring on labour earlier. As the time to go to the hospital and deliver her came closer, I knew this was my final thing I could do for Everley. I packed her pink blanket, muslins, pictures of my two children and my sister bought me all the normal things for labour which was really comforting. My husband and I drove to the hospital in silence, knowing we were going to meet our sleeping baby girl. I said to myself over and over in the car the whole way, I will do this calmly and it will be my final job for her.
Everley was born on 27th April 2023, 02:05 at 21+1 weeks. We were looked after so carefully by the most amazing team and I will forever be grateful that Everley’s delivery was as beautiful as it could have been. There were really difficult times, and times where I felt panic taking over, but I kept thinking to myself I need to do this for her. When she was born, she was born to music, in the dark. Our midwife put the cutest little hat on her and wrapped her in a little blanket and she looked so beautiful. The moment my husband held her I was flooded with the same overwhelming love I had after my other two children were born. I loved her unconditionally and indescribably, just like the others. It felt like for several hours time stood still, as we cuddled her, played music to her, and took photos of her in the Butterfly Suite. We could stay as long as we wanted and there was no pressure from anyone. Eventually I got to the place where I felt it was time for us to go, I will never know how we walked out of the hospital. My heart hurt more than I ever thought possible, and I wasn't sure how my life could carry on without her in it. But it has carried on. Not how it was ever meant to, and I’m not the same person I was before I lost her, but it has carried on and there are still good things in it. I will treasure my time with her in the Butterfly Suite for the rest of life and I am so pleased we spent the unrushed time with her.
When we went home my house felt like home again. Although my world felt very different and things felt very dark, my home was my safe place again. When we were home we had to tell my daughter that Everley had died. It will always be one of the hardest things I have had to do. We had lots of support and I read her a beautiful book to help her understand. It was really difficult for her and for us. She was upset, angry and these were huge feelings for a six year old and managing this whilst deep in grief was overwhelming and we accepted lots of support from close family. My daughter asked to see pictures of Everley and so we shared some with her and gave her a bear that she called 'Everley bear' that she still cuddles to sleep every night. I am so proud of her and the amazing things she does in Everley's name and how she lovingly talks about her every day.
In the early days after losing Everley, I spent huge amounts of time in my room as I found it really hard to socialise with people. I read books about baby loss and grief, searched online for other parent stories like mine and used apps to try and help me feel calmer when I felt overwhelmed. I visited Everley in her basket at the Funeral Directors and got to sing her the songs I sing to my children at bedtime, something I forgot to do at hospital and was so relieved to be able to do with Everley. Thanks to the most amazing team at the Funeral Directors, we also arranged for our daughter to visit and say goodbye, as did some of my family. They told me how they played her songs, read her books, and sang her nursery rhymes. They helped us to give those that loved her a real chance to say goodbye. We had a beautiful service for her four weeks after she was born and I shared with my most special people what Everley was like and what she meant to us. I promised I would do good things for her and love her and remember her for the rest of my life.
Over time, the minute by minute coping turned into hour by hour, and I started walking miles in the sunshine, surrounded by butterflies and the river listening to ‘her songs’. This gave me the time to focus on myself and Everley, as I slowly worked out how to return back into my busy world that now felt so alien. Over time, I went back to work, went out for coffee and found ways to smile again. There are still days that are very hard, and on these days I've learnt that if accept my grief is heavy right now and these days are OK to spend wrapped in a duvet or on the sofa, and that hopefully, tomorrow will be slightly lighter.
I miss her constantly, but we have built her into our lives in every way. Our children have 'Everley bears' we have ‘Everley's Fairy Garden' we have her ashes and special things in a place in our bedroom to be close to us. I am a parent volunteer for The Forget Me Not Fund, and doing things for the charity has given me a purpose and I do it all for her, because of her. Someone told me when I was in the very early days that I would live again, and at the time I didn't believe them. But it's true. Yes, a sadness sits alongside the happy times now but that's because I love her so much and I don’t want to not think about her. She is part of our family and always will be.
Since Everley died there have been people who have sat with me in the really hard times, knowing it can't be fixed but their presence has made all the difference. Saying her name, acknowledging she matters and understanding that grief doesn't have an end has been the biggest support. Everley’s story hasn’t finished, it’s only just beginning. I will forever wish it was different and she was here, but because she isn’t I will live it for her, along with my family and we will do positive things in her name.
Rachel
In October 2019 we went along to my routine Community Midwife appointment just before I hit 17 weeks of pregnancy. The midwife was unable to locate a heartbeat, but she wasn’t concerned as at this stage of pregnancy it can be tricky to find depending on the baby’s position. I was sent to Basingstoke Hospital for a scan, just to check everything was OK. Devastatingly, we were given the news that our baby had died.
These are words you never expect to hear, and it felt like time had stopped and the world was collapsing around us. I was booked in to come back in two days later, and on Thursday 10th October I was induced and gave birth to my daughter Alex.
We are beyond thankful for the care and compassion we received at Basingstoke Hospital, especially from the three amazing midwives we had during our stay. My husband Alan and I were able to hold our baby, read to her and sing to her and we were able to spend 22 hours with her in their Butterfly Suite before we had to walk away and leave her behind.
The days and weeks following passed in a haze of shock and grief. Six weeks after Alex was born sleeping, we had a small funeral, with just myself, Alan and our vicar in attendance. I struggled to talk about Alex with anyone other than Alan for a long time, but the support and care offered by Laura and the Flutterbyes group helped me and now I am able to talk openly about her, not just within Flutterbyes, but with family, friends and at work.
We are thankful to have been blessed with our rainbow baby, Faith, as well as our eldest daughter Clara who was two and a half when we lost Alex. We talk openly about Alex around them and they both know they have another sister who is watching over us all.
Alex will always be my middle child, my darling angel baby. I will miss her every day for the rest of my life. I will never forget her and appreciate the opportunity to talk about her just as much as I do my other daughters.
Kirsty
