The Baby Loss Hub – Neonatal death – Finn’s mum
I’m so sorry if you’re reading this and you have experienced the heartbreak of baby loss, there really are no words, but I’m so sorry your beautiful baby is not in your arms like they should be.
On 23rd June 2021, 5 days early, my husband and I headed to the hospital, after a last minute mad dash at home packing the last bits into the hospital bag and fitting the baby car seat into the car, still not fully believing that I was actually in labour and things were progressing as quickly as they were. I’d had a healthy and low risk pregnancy, albeit having HG (hyperemesis gravidarum) and still suffering from long covid, but I’d always been told during my pregnancy that neither of these made it a high-risk pregnancy. I had expected to stay in hospital for a few days to get some extra support with feeding, but nothing could have prepared us for the week we stayed in hospital and leaving with a memory box instead of our perfect baby boy, Finn. Due to ‘an event’ in labour, he was starved of oxygen and needed to be resuscitated when he was born. A few hours after Finn was born and before either of us had been able to hold him, Finn was transferred to the NICU at a larger London hospital. He spent 7 days in the NICU, had 3 days of therapeutic hypothermia for HIE (hypoxic-ischaemic encephalopathy) and various tests and MRI scans, before we were told he had suffered such severe brain damage that affected every part of his brain, that he would not survive without being on a ventilator. We had to make the most devastating and heart-breaking decision to turn off his ventilator. We had 24 hours left with Finn and were finally able to be together as a family of three for the first time (due to COVID restrictions, only one parent was allowed in the NICU at a time with their baby). A few family members were able to come and meet him, and we were finally able to have our first cuddles with our beautiful son. On 1st July 2021 at 3.10pm, as we held him in our arms and had to say the hardest goodbye, his ventilator was turned off.
We were warned the night that Finn was born, after he had been resuscitated that he might not survive the night, so to know that he had made it through the first 24, then 48 hours gave us some hope. Our time in the NICU was very much a roller coaster of emotions; from having an optimistic doctor one day to a pessimistic doctor the next day, telling you your baby could still not make it. From the pure elation that his little body was producing urine and being able to change our first poo filled nappy, to being told that he was not initiating breaths by himself without the support of the ventilator. We had been told that Finn had brain damage from the oxygen deprivation during the birth, and we knew that if he was able to come home, he would have moderate or severe disabilities. We understood his development, swallowing, breathing etc. would most likely be impacted and were prepared for that, we just wanted our baby boy to be able to come home, no matter how long it took. It wasn’t until we got the MRI results a week after he was born that the full extent of the damage caused to his brain became clear to the doctors. Looking back now, although that week in the NICU was emotionally exhausting and very difficult, especially only being allowed one parent in the NICU at a time due to covid restrictions, I am so grateful that we got to spend to those 7 days with Finn, spending time reading and talking to him, and stroking his baby soft skin. I look back at pictures with both smiles and immense pain and sadness, that we got to parent Finn, but that his life was cut too short due to a situation that was completely out of our hands.
Nothing can prepare you for the loss and grief you feel of losing a baby. I have experienced the grief of losing grandparents and even the grief of losing one of my best friends from school. In all honesty and naivety, I thought it would be similar. However, the grief of losing your child is like no other grief and nothing I have ever experienced before; it is intense and all consuming, in the early days and weeks, it’s like you are drowning or suffocating and struggling to catch your breath. You can’t think straight and have a dark fog hanging over you. It is impossible to think further than a day ahead and you eat, not because you are hungry, but because you know you should, often having to be reminded by others to eat.
When we left the hospital, we were given a Sands bereavement support book. In the first few days and weeks after Finn died, I remember reading this booklet, I guess in the hope that it would tell me how I was feeling was ‘normal’. It talked about remembering your baby and making memories with them in the hospital. However, it wasn’t giving me information about what I needed to know in that moment, having left the hospital and now being back at home in our quiet, empty house. I needed information and answers to my questions like, ‘how long will I feel like this?’ and lived experiences, someone to help guide me through the numbness and the pain. I wanted to find someone else in my situation, someone I could resonate with and tell me if I was going to feel this broken forever. This is one reason why I have decided to be so open in sharing what has happened and my experience of baby loss, because this is what I desperately needed. I needed someone to tell me about the honest, raw, life shattering reality. I hope that by being open about what happened to our family and sharing Finn’s story, that it helps break the silence around the taboo subject of baby loss, helps someone feel less alone, and helps to educate those lucky enough to not be part of the baby loss community, to know how to better support someone they may know, who has or may experience baby loss in the future.
As I sit and write this, tomorrow is 7 months since Finn died. We are awaiting the report from the HSIB investigation into Finn’s death and are preparing with our solicitors for an inquest. Although we don’t yet have the final report, we do know, from what the HSIB investigator and the hospital have told us, that Finn’s death was entirely preventable. It is crushing and so difficult to live with the fact that other people’s actions and decisions have resulted in the death of your perfectly healthy baby. Life after baby loss and going through investigations and legal cases is all consuming, emotionally, and physically draining. I wanted to share some things that I have found helpful and that I have found comfort in over the past few months since Finn died, in the hope that they might also help someone reading this who is also on this unwanted path.
To my surprise, Instagram has been the hub and gateway to most of the support I have found. It can also be triggering and full of reminders of what we should have with Finn, but it has been the best way to meet and connect with others in the baby loss community. I remember it so clearly, a few days after Finn had died, sitting in our back garden on a sunny day, wanting to get away from all the baby related content that had filled my feed during my pregnancy. I searched the hashtag #neonatalloss. That was my first step into the baby loss community - a little part of the internet tucked away, that you don’t discover unless you are searching for it. A post came up about pregnancy body vs postpartum body and the mixed feelings of your postpartum body after baby loss, something I was having difficulty with. This post, written by Hannah, led me to looking at her profile and finding other posts that resonated with me, Hannah’s account became the first baby loss related account I followed. Through Hannah’s account I came across others that she shared via stories and posts that she had saved under highlights. Although I felt anxious, I reached out and messaged Hannah, as well as a few others including Beth, and I started chatting with other mums who I came across and were in a similar situation. Other hashtags I found helpful were #neonataldeath #babyloss. Finding Instagram pages and other loss mums that shared the same thoughts and feelings I was having was so validating, it helped me realise that the thoughts and feelings I was having were ‘normal’. I often found it difficult to put into words what I was feeling and would come across a post that perfectly explained it in words I couldn’t find. I was able to share posts that resonated with how I was feeling to my story, letting friends and family know a small insight into what I was feeling, without always having to find the words to describe it myself. Although it has been helpful to connect with others who have experienced the same type of loss, I have found that regardless of the type of baby loss, a lot of the thoughts and feelings cross over into one type of loss and another, so other baby loss accounts which talk about stillbirth, miscarriage and TFMR (termination for medical reasons) have been just as helpful. Also, don’t forget, you can unfollow or mute Instagram accounts that you find upsetting and triggering.
Afterevalyn – Lyndsey, Evalyn’s mum, writes the most beautiful poetry. I’m often in tears reading them, as she conveys the reality of baby loss in the most eloquent but relatable way. We used some of her poems at Finn’s funeral, I’ll always be grateful for finding her account as other poetry and readings that were suggested to us didn’t feel appropriate.
Breathing After Loss – Katie, Zayn’s mum, is one of the accounts I share the most to my stories. She creates posts and talks on stories about everything baby loss related and recently pregnancy after loss, as she is pregnant with Zayn’s little brother. Katie says it how it is and is not afraid to talk about the ugly feelings of baby loss too. Reading her posts often feels like she has pulled the thoughts from my own mind.
The Things I Wish You Knew – Laura, Nico’s mum, is one of the accounts I followed early on after Finn died. Again, she talks about all areas of baby loss in a very relatable way, she also creates some brilliant reels. In the early weeks after Finn died, I often found myself thinking “yes, exactly this!” about her posts, when I couldn’t find the words to describe something myself.
Zoe Adelle – Zoe, best selling author of The Baby Loss Guide, is well known in the baby loss community. She posts daily quotes and thoughts about baby loss, grief and secondary losses.
Travelling With Grief – Erica, Verity’s mum, is a therapist, writer and loss mum, she has an authentic way of writing about birth trauma and baby loss. I also appreciate her dark humour and often find myself genuinely laughing at the stories and memes that she shares.
This Dad Made That – When putting this list together, this was the first one that came to mind. I had a beautiful ring made with some of Finn’s ashes. There are quite a few companies who make cremation and memorial jewellery, but I loved that Andy had some unique designs and was a small business, so it felt like he would give it a really personal touch. I love that my Finn ring means that I always have him with me.
Original Momma Bear – The most gorgeous weighted bears, made exactly to your baby’s height and weight. When Finn first died, a family member told me about weighted bears, to be honest I couldn’t think of anything worse so soon after he died. I thought it would be a horrible reminder of the baby we should be holding in our arms. However, as the months went on, the idea kept playing over in my mind and one day a suggested account popped up. I ended up getting a momma bear for Christmas and I’m so glad I did. The bears are so lovely and soft and I loved that it was the same style as our aching arms bear and the personalised bear my husband had got for Finn. It has given me comfort to cuddle the bear on really difficult days when my grief is overwhelming. We plan to have our Finn bear in family pictures to represent Finn, and I like the idea that he can be a tangible way for any future siblings to be connected to Finn.
Little Harry & Co – This shop has a mixture of clothing for loss mums and siblings, remembrance items and personalised prints. I love my ‘mama’ sweatshirt and there is range of designs that can be personalised. Lynsey also shares lovely, personalised graphics on her Instagram page.
When you wish upon a star – Abi created this shop in memory of her son Lucas, she creates gorgeous hand and footprint keepsakes, has rainbow baby gifts and a beautiful collection of baby loss cards. We appreciated all the ‘sympathy’ cards we received when Finn died, but we personally preferred the personalised cards and ones that didn’t use the phrase ‘angel baby’. I love that these cards can be created for any occasion, in memory of a baby, or for their birthday.
Poppy’s cards – It is difficult to find appropriate cards in traditional card shops to include your baby who has died, or cards from your baby, to you and their siblings. I am so grateful small businesses like this one exist, so we can still include our babies. We want to include Finn in as much as possible, as we would if he was here, so it is really important to me to be able to get cards for him from us, and cards from Finn to us on special occasions.
I’m sure most people will be familiar with charities such as Tommy’s and Sands, but I wanted to mention a charity that I have only discovered recently, and wish we’d known about when we were in hospital with Finn. The charity is Forever Finley, they provide bereaved parents with 3D hand and feet casts. We were able to have prints done of Finn’s hand and footprints (which I’m immensely grateful to have), but to have a 3D cast to actually be able to hold his little hand would’ve been so special. At the time when we were in hospital with Finn and while he was at the funeral directors chapel of rest, I didn’t know about charities that offered this. This is something I regret not being able to have with Finn, so wanted to share so that others know there are charities that can offer this.
Over the last few months I have found that there are so many wonderful people, charities, organisations and little businesses out there to support those who have experienced baby loss. When you first become a bereaved parent, it can feel like you are alone and the only one going through it, but I promise you are not. The baby loss community is full of the most caring and supportive people, and it is only through them that I have discovered and am able to share these pages and small businesses. Please take a look at other blog posts in The Baby Loss Hub for other resources that might be helpful – I have tried to share ones that haven’t been mentioned in other posts. I hope this post has been useful. Please don’t ever feel you are alone, I am always happy to have a chat or share a rant and would love to have a chat with you about your baby, if you want to get in touch, you can find me at @ruthw88.