I will always remember the first day of Autumn in 2016. It was October 12th, a Wednesday. As we drove back from picking up 25 white balloons for your balloon release, I will always remember staring out that car window and noticing that the tree's looked empty. Their leaves had left them and instead were dancing on the roads and playing with the cars as they came driving by. It wasn't the official first day of Autumn but to me it always will be. It was the day that I was SO aware of my surroundings. It was the day we said goodbye, the day of your funeral.
No one could prepare us for having to plan your funeral. The funeral home were so supportive but almost blase about giving us the catalogue to look through to pick your coffin. It was something that they had planned numerous times but for us, so completely alien. At that appointment we picked your tiny coffin, flowers and the type of service among other things. I didn't really know what we were doing but all I did know was that I had to try my hardest to make you proud. To do your short life justice and make it the most precious day that I could.
We decided on a cream coffin. It felt innocent and fitting for you and I always loved how babies looked in neutral clothing. We picked flowers for you made into an arrangement of a heart (a symbol which will always be yours) with a teddy sat on top, called Bramble. He watched over you that morning, whilst you were driven from the funeral home to ours and now he sits in our living room with Charlie Bear, a donation from Aching Arms.
Strangely, I had been okay leading up to the funeral. Of course I had moments of grippling despair but on the whole I *think* I was coping. I had things to do for you and I had things to plan. Its since the funeral that its really gotten hard for there is a massive difference between HAVING to do something for you and CHOOSING to do something for you. But that day I was okay, until I sat in that limousine. As soon as I sat down, I strained my neck to look back at your coffin but I could hardly see it. I just knew that you were there and I felt an overwhelming sense of panic. We started to drive to the crematorium which was only a 5 minute drive, if that but the tears started to build up behind my eyes. I didn't want to do this. I just wanted to take you home.
As we drove in to the crematorium, the tears fell as I saw the 25 wonderful friends and family who had come to share your day. It was SO real, it WAS happening and I just wasn't ready. The reality stung and it felt like your birth all over again. I just didn't want to do this.
One of the hardest things was picking music to have played at your funeral. I just kept thinking, how on earth do I pick music for my dead baby girl? I had no idea what was appropriate or what music I wouldn't mind forever being yours from that day on. In the end we opted for 'Fix You' by Coldplay as we carried your little coffin in to the chapel. I had listened to that song a lot during the 5 weeks that we struggled to keep you with us. All I wanted to do was fix you and if you listen to the words they are just so relevant to how I felt.
I wasn't sure that I was going to carry your coffin. We only ever planned for Daddy to but at that split second of him lifting you up I knew I had to hold you too, I needed to do this for you. From somewhere we developed an innate strength inside and as your parents we just wanted to do things for you ourselves.
During the service your Daddy bravely read a reading. He was so composed and I was so proud of him. He really has looked over you from the very beginning, making sure that everything has been done properly. Every scan, every care we gave whilst you were with us and even when you passed away he watched over every single detail. He really is the best Daddy to you and your sister and I am so proud of the love he showed that day.
I read a poem that I had written. I knew I wouldn't be brave enough to write you a letter and read it out so I shared my feelings in the form of a poem. I didn't expect that to be so hard to do but I actually sobbed throughout it all and needed your Daddy with me. I don't think I have ever been so exposed to so many people but I didn't care as I just needed to do it for you.
As everyone left the chapel we stayed behind for a few moments to be alone with you. We had the second piece of music playing, 'A Thousand Years' by Christina Perri. This was almost our first dance song at our wedding so it already meant a lot to us and it was important to me to part with your coffin with the words that we love you, more than anything else. Leaving you there was the hardest thing I have ever had to do. I had to leave you at the hospital and again at the funeral home but this was just as hard. Leaving you will always be the most unnatural thing I have ever had to do.
After the service we went down to your 'spot' and let off 25 balloons. There is something quite comforting about watching those balloons fly off in to the sky and knowing that they represented our love for you. I gave out little seeds packs that I had made in your memory too. More than anything they gave me something to do in the lead up to your funeral. I didn't have you to mother and so I threw what energy I had into making those instead.
That evening we picked up your sister from the childminder and gave her the biggest cuddle. We decided not to have her at the funeral as we didn't want her to see us all sad but we have photo's and she will know exactly what happened. Once she had gone to bed we opened a bottle of our wedding pressco and made a toast to you, our daughter.
Your funeral was a beautiful day and I hope we did you proud, my darling. I wish we would have years of planning birthday's rather than remembrances but I am blessed that we could at least give you a special day and have so many people to share it with.
We love you forever x
Though the seconds, hours and days will pass
We make our promise to you
We will love you until our souls reunite
As our bodies yearn to do
Time is brief and your life was short
But your delicate beauty shone
You touched our hearts, you showed us love
Darling, your angel memory lives on
Through the seasons and the flowing waves
We will look for our little heart
The leaves that dance and the galloping tides
Unspoken bond, we're not apart
Now we know, the true meaning of love
An exhausted heart, a piece of it gone
But no regrets, you will keep it safe
Darling, your angel memory lives on.
They say that grief comes and goes in waves. This is true. Most days I 'cope' and I go to bed at night feeling relatively 'okay.' It the other days, the days when grief comes bounding in on the waves that causes your whole world to crash. It creeps up on you when you least expected it. Today the grief has got me, its got me in its grasp and its not letting me go. Its scary and overwhelming. Today, my missing you has engulfed me. Today I really, really miss you.
Someone might wonder how you can miss someone who wasn’t born alive. Is there enough for you to even miss in the first place?
There is so much, SO much that I miss of you.
I miss being pregnant. I miss feeling your movements. I miss wondering what position you were lying in my tummy. I miss your sister calling my tummy a baby and I miss wondering what you looked like. I miss the joy and the anticipation which came with carrying you.
I miss your smell. I have one hat and two blankets that you were wrapped in, tightly folded away in your memory box. When I smell them, I smell you but I don’t do it often for I am terrified of losing that smell. It is the smell of a new baby, the smell of my baby.
I miss your little face. I miss analysing EVERY SINGLE part of your perfect little face. I miss kissing your cold little forehead. You were so cold but I miss it so much. I miss holding you close to me. I only held you close to me for an hour or so before you needed to be placed in the cold cot. Once back from the post mortem you were too delicate to lift out of your coffin.
I miss feeling the weight of your body in my arms. I miss cuddling you and having you close to my heart. I miss you being whole. I still have you but it isn’t the same anymore. I cant see you and it kills me.
I miss expecting you to be here. You should be here soon. I should only have about 6 weeks left to go until we would meet. I miss the future that I was expecting to have with you.
Missing you only seems to get harder as time goes on because my life is going on. Every day I have to live without you, I miss you more. The missing you never stops and sometimes the weight of it seems too much to bare. Grief doesn’t get easier as time goes on and time isn’t a healer. I am only learning to live with the grief, it is becoming a part of me but it doesn’t ever stop. It is terrifying when those moment of reality strike, my reality.
Grief has got me good and proper today.
Today, I just miss you.
I think someone has taken my identity, can you help me get it back please? One day, I knew who I was. The following day I was lost and I still am. Everything that I thought I knew has changed, my eyes see things in a different light and my brain processes it all another way. I look in the mirror and the reflection staring back at me has altered. It IS still me but it also is not.
I knew who I was before this all happened. I was a mummy, a wife, a midwife and I knew what was happening next. I had plans, I had dreams and I had a path in which to follow. I am still a mummy but I don't know how to be a mummy when one of my daughters isn't here. I am still a wife but I don't know how to support my husband through this when I cant support myself. I am still a midwife but how can I go back to a job like that when every single day would be a constant reminder of what I have lost?
I knew what was suppose to happen next. Holly was suppose to happen next but not like this. I should be preparing for having a baby soon, packing my hospital bag and making plans for her arrival. I should still be joking that she will come on Christmas day and wondering what the labour would be like. I should be wondering if she would look like my first born, I shouldn't already know that she does.
Overnight it all changed. It changed when we heard of Holly's poorly heart, it changed when we had the news from our final scan, it changed when we made our decision and it changed the day she was born. Everything has changed. I felt so naive to the world before. I thought bad things only happened to 'other people.' Now my brain recognises that life can deal you a bad set of cards, at any point. I thought death was something to be feared but now my heart tells me its not scary and that when that day comes, I will meet my Holly again. I thought that it would hurt to lose a baby but I didn't realise it crushes your soul and steals who you are.
I don't know what happens next. I am struggling to know who I am and where I am going. Life seems to move without me really being actively involved. I change my hair, I get my nose pierced, it doesn't tell me who I am but I am just trying to feel something. People don't tell you that when you lose a baby you still feel an innate need to mother them. You still feel the need to parent them. So I buy her flowers, I light her candle, I talk to her and I write to her. I am trying to be her parent but I cant quite grasp this new identity, nothing feels enough.
So I carry on and I hope one day it comes to me. I hope I find some comfort in this new identity and I hope one day I find who I am.
You are going to have to be patient with me. I need to share Holly’s unedited version of events with you but it is so incredibly hard to do so. I hadn’t wanted to, I was worried what people would think and wanted to protect Holly’s memory. But I’ve come to realise that to fulfil Holly’s legacy, I have to do this. I have to achieve what I set out to do, I have to help people who might go through the same thing and I have to share in Holly’s memory, out of my love for her.
Rewind to our 20 week scan. I wasn’t expecting anything to be ‘wrong’ with her. I was rather blasé and focusing more on whether we were going to find out the sex or not. At the end of her scan the sonographer told us that our baby had an enlarged heart, fluid around the heart and a slow heartbeat. We were whisked out of the scanning room to see the senior midwife who made us an appointment for the Monday at St Evelina’s children hospital, who specialise in fetal cardiology.
That weekend was pure hell. I lost track of how many times I googled ‘enlarged heart on fetus’ to try and gather some understanding of what could be happening to our baby. Google didn’t provide us with any answers though, as enlarged heart really could mean so many different things.
On the Monday we travelled to the St Evelina and were met by a senior sonographer. She spent an hour scanning me, in complete silence. I lay there listening to my baby heart beating at only 60bpm praying that thing weren’t as bad as I feared. After an hour she asked the fetal medicine consultant to come and scan our baby’s heart. 30 minutes more of pure silence as I watched every frown she made and tried to make sense of each sharp inhale.
Eventually the scan was over and we were asked to move to another room. My legs were like jelly. I clung on to the edge of the bed as I got up, terrified that I was going to pass out with the pure weight of my anxiety. We sat down and the consultant began with the words ‘Your baby has several severe heart defects.’ The tears that had been filling my eyes fell as my entire life changed in that second. Our daughter had complete heart block. A diagnosis which has a 1 in 20,000 chance of occurring, had left our daughter with her ventricles and aortas not working together, causing her slow heartbeat. She would need a pacemaker soon after birth to survive. Additionally, our baby had a suspected narrowing of her pulmonary artery, which provides blood to the lungs and a suspected hole in her heart, all of which would require open heart surgery soon after birth. Her heart was surrounded by fluid which if spread, would kill her.
They suspected that the heart block was due to me producing antibodies which were attacking her heart. After some blood tests it was confirmed that I carried the anti Ro and anti La antibodies which had caused this devastation. I was told that any future pregnancies carried a 20% chance of this happening again. The antibodies were found to be related to me having a syndrome called Sjogrens, an autoimmune disorder. All of this was an unknown to me, my previous pregnancy hadn’t been affected. The reasons for the hole in the heart and the narrowing arteries were uncertain though. It was unusual to have these alongside the heart block and our consultant had only seen this a few times in her 20 year career, which meant a prognosis was very hard for her to make.
After that first scan, we were given two options. Carry on or terminate. We felt that we couldn’t give up on her, we needed to know more. With all the will in the world and all the love in our hearts we prayed we could make this right for our baby.
Over the next two weeks we had another two scans. One, by a doctor who had only seen this four times in her career and suspected that our baby would develop fluid around her other organs (hydrops) and pass away. The other scan was more positive as the consultant felt that the previous narrowing of the pulmonary artery looked better and as her heartbeat hadn’t dropped, she was hopeful that we may get to 33/34 weeks to be delivered.
Unfortunately, things took a turn for the worse. On September 1st, at just over 24 weeks we had our next scan. Initially, the doctor thought things looked the same and as with all the scans my stomach left my mouth and I could breathe a small sigh of relief. But as the doctor fed back to the consultant, the consultant decided to scan me herself. She took her time and it felt like the first scan all over again. We were taken back into the same little consultation room and told the news that things had progressed much worse. Our daughter’s heartbeat had slowed to just over 50bpm. The narrowing in her artery was definitely there and the pressure at which the heart was working was so much higher than seen before. Her heart muscle was starting to break down, most likely because of my antibodies attacking her. The consultant didn’t think that our baby would survive pregnancy. If she did, she would require life saving open heart surgery but would never be an applicant for a heart transplant, which she would most likely need.
Our baby was dying. In the one place she should be safe, it was slowly destroying her. She was being forced into a battle where there was no way of winning. My heart bled. We went home and I couldn’t talk. All I knew was that no child should live with the fear of death. No child should be born into a world of pain.
Getting pregnant and expecting a baby is the most rewarding and meaningful moment in our lives. We get pregnant because WE want to have a baby. But the moment that I knew our baby was going to live a life of pain if she survived, that ‘want’ changed. I didn’t want for me, I wanted for her to live a life as she deserved. I wanted her to be able to do what other children do, I wanted her be healthy and dream as other children did. I didn’t want her for me, I wanted her for her.
That weekend, we made our decision. Our darling baby was dying and we wanted her to feel no pain. All she ever knew was my heartbeat and warmth and that was how we wanted her to stay. We made the decision that no parent should ever have to make and we chose to live this life of pain so that she would never have to. We did the ultimate gift of love that anyone could give. We chose to keep our Holly safe.
It wasn’t easy. I was terrified it was the wrong thing to do. I didn’t feel qualified to make such a decision but as her parents, we COULD make the choice. Holly had no choice but to live in the environment she was given, for as long as her heart would hold out.
I spent the whole weekend just wishing that she would pass away herself so that I wouldn’t have to live with making this decision. She didn’t move much anyway, as she didn’t have the energy but when she did I tried to ignore it, I couldn’t bare to think of her inside me. Out of everything, I will regret this forever. I wished I had just loved her inside me for that little bit longer, cherished every moment and spent time with her whilst she was still alive.
On the Monday we went back to the hospital. We spoke to another three consultants who all agreed that they didn’t think she would survive pregnancy and that we were doing the right thing. It didn’t make it easier, but it reassured me to know that they felt the same as us. We had held on for the five weeks in the hopes that she wouldn’t get worse but she was already dying.
I was given an injection through my tummy and straight into Holly’s heart. I have never been so terrified in my life. I wanted to run away but I couldn’t. I needed to look after Holly still. I wanted to keep my heartbeat slow that she wouldn’t notice any change inside me but it was impossible but before long it was done. Our little Holly had passed away in the most comfortable place she knew. We had saved her from pain by doing the unthinkable as parents.
There have been so many times that I have regretted what we’ve done but only on a surface level. I break down and cry because I miss her so much that I wish we hadn’t done it but the reality is, I know we did the right thing. I know she wouldn’t still be alive right now, I know she would have experienced pain and a losing battle. I would do the same again, to keep her safe.
Sharing this is the hardest thing to do. It’s a taboo within a taboo. I had someone I could talk to who had been through the same thing but I know many now, who didn't. I respect whatever decision parents make in a situation like this because every situation and every person IS so different and a situation like this is just so impossible, whatever you do. Whether you carry on with your pregnancy, I respect you for the strength it takes. If you interrupt the pregnancy, I respect you for the strength that takes. There truly is no right or wrong answer so instead we made the choice that made the most sense to us. I don't judge as we do what have to do to live and tell ourselves what we do to cope.
I needed reassurance when I was struggling with this so if you are reading this because you’ve found yourself in this position, know that you ARE doing the right thing. You are doing the right thing for you and your family, whatever that choice may be. If you did as we did, know that you are choosing the pain over your baby having it and that is an incredibly selfless act of love. I haven’t learnt to forgive myself for this guilt yet. For the guilt of my body doing this to Holly and the guilt of what we had to do but I will. I will and so will you. Trust in the decision you made at the time as it’s the only thing you had then. Trust that your baby only knew love and your pain stops them from ever feeling it. Trust that you are not alone and that I am with you. Your reasons are VALID, your love is VALID and your grief is VALID.
Just keep going, the forgiveness will come.
On the 7th September 2016 at 25 weeks gestation, Holly was born sleeping after a battle with complete heart block.