I have seen that so many bereaved parents often have a symbol that represents their baby. For me, one of Holly's symbols is the holly plant. It sounds silly, as its obvious that the holly plant is around at this time of year but seeing so much of it is helping me get through Christmas. When I see a holly plant I know that my Holly is with me and for that moment it makes me stop and smile. Holly is all around me right now.
The prospect of Christmas without one of your babies is unimaginable and unthinkable. There is a massive gaping hole that should be filled with the life of my little Holly. There are millions of these gaping holes where so many little lives should be this Christmas. Many of us are decorating our babies graves, buying them presents and hanging their stockings, all in a bid to try to keep them very much with us. Many of us simply can't bring ourselves to celebrate Christmas this year, so instead are simply focusing on just getting through the day. I have always loved Christmas. It has always felt special and magical. A day to be spent with the ones you love. But the idea of spending it without one of your loved ones just adds to another surreal moment and flash of the reality that this is my life. I feel robbed that my daughter isn't here. I feel robbed that she will never experience the joy of christmas, the pure excitement, the love of family coming together and the magic of Father Christmas. This year I should be having Christmas with a very newborn baby and my toddler, not taking a visit down to Holly's 'spot' at the crematorium on Christmas morning. I am trying to keep busy. That's part of the reason why I created the Remembrance Tree as I needed something to do for our babies, something to mother and something positive. I am so very fortunate that I have become part of (sadly) a growing community on IG who have included Holly in their Christmas's this year. Holly has literally been remembered all over the world which means just so much. She has recieved Christmas cards, taken part in balloon releases and also been on some truly wonderful gifts from special friends. It means so much to have people think of her and think of me. I have lost the 'festive cheer' this year, it was inevitable but the love that people has shown me reminds me of why this time of year is important. It is the kindness, the consideration and the empathy which is helping me to get through it. When alot the world feels dark and Christmas feels full of 'what's the point' the love of others shows me why it is important for me. It is to keep going for my eldest and it is to keep going for my youngest, to continue Holly's legacy and hope that it reaches out to someone else struggling this Christmas. Christmas doesn't stop when you lose a baby. I wish it would, I really wish it would but as with everything, life keeps on going. But I have realised that the support of those who love you keeps on going too. The support is quite literally holding me up, embracing me and showing me that I can get through next weekend. I am so grateful for those who have been including Holly this Christmas, it means more than I can ever explain. I hope that when you see some holly it reminds you of my little Holly and how much love and kindness go such a very, very long way.
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December 7th 2016. A day I had been dreading. Exactly three months to the day of our little Holly silently entering the world, we had our post mortem results appointment.
There is something quite surreal about walking back into an Antenatal clinic with no blooming baby bump or anticipation of seeing your little one on scan. In fact, the last time we were here was to have an injection put into Holly's heart, surreal is actually an understatement. I thought I would cope okay but as we turned the corner into the clinic, tears began to fall. It felt like when we turned the corner in the car at Holly's funeral to see all the people waiting for us. It is an odd feeling of needing to get there as it is so important but also a fear of reality. Luckily the waiting area had changed since we had last been and I was placed in the gynae section so that we didn't have to sit with any pregnant ladies. It was a small thing but my god it helped. Our consultant came and got us and we sat down for what would be an hour and a half appointment. I had no idea what to expect, I just hoped and prayed that we would get some answers. We already knew that part of Holly's heart was bad due to investigations in the pregnancy finding out I carry Anti-Ro and Anti-La antibodies. Brutal little bastard antibodies which attacked her heart and had caused complete heart block. But we didn't know why the rest had happened. Part of me was hoping that something was seriously wrong with her. So seriously wrong that it would have taken the pressure off it being my body had that attacked her. Something was seriously wrong with Holly. It was the heart block that was serious. And yet, up until that appointment I don't think I had really grasped that fact. I still hadn't realised how deadly heart block could be. I needn't had worried about anything else being wrong with her as the heart block alone was enough to kill her. The post mortem found complete destruction of the cardiac conduction system. Holly would have never survived. Her heart would have continued to slow until one day it would have just stopped and I would have probably gone into a very quick and scary labour at home. We were too early into the pregnancy to have saved her as she wouldn't have survived being born that early. The reality is a harrowing lose/lose situation. The only comfort I have is knowing we did the right thing. We didn't prolong her weak heart struggling to pump. We let her go peacefully, comfortably and with our love. They found that the heart muscle had started to calcify. It was dying and it was breaking down. Other structures in her heart were thickened and scarred. My antibodies had also attacked the attachment of Holly's placenta to my uterus. They too were breaking down. Our sweet Holly never really had a chance of life. The cause was the antibodies. Something which I never knew I had. Something I wish I never knew about. It's likely that the antibodies are a mutation from an illness or even from a vaccine but as I have since been diagnosed with Sjogren's syndrome (in which they are related), god knows how long I have had them for. The rest of Holly was perfect. Nothing genetically wrong and nothing structurally wrong. We know this because we read the entire report. The entire report which details what cells they found on what organs, how much her brain weighed and how her little ovaries had been seen. A report which hides nothing and which the details have been scarred in to my brain forever. No parent should ever have to go through this. We talked about future pregnancies. Before having Holly, I would of had a 1-2% chance of this ever happening. 1 in 20,000. But now that it has happened I have a 20% chance of it re occuring and that is just so bloody scary. This was the 5th consultant to say that she only see's this once every 10 years and so she has referred us back to St Thomas's to see a specialist. As it is so rare and so recently discovered, the information that they have for medicine to help prevent it happening are limiting. There simply haven't yet been enough ladies to go through this for them to be able to have conclusive evidence of what may help. So far, trials have included taking steriods, which seem to show some small benefit and in America, having three weekly intravenous immunoglobulin which shows unclear results. They are the only options. Scarily, heart block isn't picked up until between 16-24 weeks either. So any pregnancy we have won't have the 'all clear' for a long time. In all honestly, I don't believe any pregnancy can ever have the 'all clear' although I wish I had the naivety to believe so. It is incredibly scary and the fact of 20% 'odds' being in our favour give zero reassurance. After all, the odds of this happening in the first place were so incredibly slim. Needless to say we are both exhausted from this. The last week has been hard as we try to come to terms with all this information, what it may mean for the future and of course just feeling so overwhelmingly sad for our poor Holly. The only comfort we have is knowing that we DID do the right thing but for me, it is so hard to come to terms with the fact of my immune system being the cause. Of course I didn't intend for it to happen and I know that but until your body has killed your baby it isn't really something that anyone can relate with. It is just something I will learn to live with. I hope this post helps someone one day. I couldn't find anyone at the time of us going through the diagnosis who had been through this (which I guess means the occurance rate is true!) I had people to talk to who had lost a baby and terminated a baby but I really wanted to talk to someone who had this exact diagnosis. It is quite amazing how alone you can feel despite being surrounded in a network full of love, hope and good intentions. We are both a little broken right now. But as with how our new life seems to go, one day soon the grief will ease its squeeze on our chests and we will be able to smile for a short time. Until then we are preparing ourselves for more appointments and more uncertanties. I am so greatful for medicine but I wish this wasn't the cause of my gratitude. So we keep watching the clock, I know the ease will come soon. Some days I just want to scream. I want to scream and tell people to wake the hell up. Do you know how lucky you are?
I want to scream at people to stop bitching about the NHS and maternity services. So what that you have to wait to be seen or wait to take your baby home? To BE seen. To take your BABY home. I would have given anything to take my baby home. Do you know how lucky you are? I want to scream at people who tell me that things will be okay and that what happened with Holly won't happen again. How the hell do you know? Do you think that because the 20% odds of it happening again are in my favour that I should relax as surely it won't happen twice? You can't control what happens in the universe anymore than I can. Just because something awful happened it doesn't mean that I am then owed something good. Life doesn't work like that and I am tired of these empty promises and these positive thoughts. Positive thoughts don't do anything otherwise Holly would still be here. That's great for you if you don't understand what I mean and I truly mean that as it means you haven't felt this pain. Do you know how lucky you are to not understand this kind of pain or understand my constant fear? I want to scream at people who take pregnancies for granted. I am happy for those who can just get pregnant and 'pop' babies out, I really am. I am happy that there are some who plan their conception purely based on what month they want their baby to be born and those who 'breeze' through pregnancy. I truly am happy but I just want to scream that IT IS NOT FAIR. If you are one of these lucky people then PLEASE dont be naive, make the most of our maternity services. Don't decline scans, self discharge because of waiting times or refuse to make use of maternity services for fear of medical intervention, it is DUMB. It does not make you a 'big' person, it does not make you clever and it does not make you a super mother. Do you know how lucky you are to have these services available in the first place? God forbid you ever end up with a pushing out your deceased child but sods law, it won't happen to you will it? I want to scream at these utterly ridiculous arguments and belittling with regards to breastfeeding vs bottle feeding and sling wearing being best for baby etc. Who the hell cares? Just get on and be a mother to your baby. Do you know how lucky you are that you even have a baby to mother in the first place? I want to scream as those who think they know how I should be grieving. It is my grief and nobody else's. I will do what I want and when I want. My grief is normal. If you are sick of hearing about Holly or think she isn't worthy of me being sad then please do me a favour and delete me off of your social media. Do you know how lucky you are to not understand why I do what I do? I want to scream at everybody for just being able to carry on. For those being excited about Christmas, for those making plans and doing seemingly normal things like going out for a drink with friends. I hate the thought of Christmas, I don't feel able to make any plans and simple things are now monumentally hard for me. A lady I know was purposely avoiding me at babygroup the other week. I became one of those people to be avoided because people don't know what to say to me. It is hard enough with what I am dealing with, without others acting different around me. Do you know how lucky you are to be the person avoiding someone or be the person to struggle to find the right words rather than the person to be avoided? I don't want people to understand this pain because then it means that you understand it all too well and I truly do appreciate people's support, despite how this blog may sound. But sometimes I can't help but be angry. People are so god damn lucky and they don't even know it. There is so much, SO much to be appreciated but yet it hardly ever is. I am utterly exhausted, I am bitter and I am angry. I am beyond trying to sympathise with other people right now. I am self absorbed in my grief for Holly and you know what? I don't care. I know how lucky I am for my eldest daughter and I know how lucky I am to have met my youngest daughter, despite the pain that has followed. I know what matters. I know where my luck and appreciation is placed. Do you know how lucky you are? In the middle of November I decided that I needed to actively do something this Christmas to remember Holly. I needed to do something public for her and something that would keep me busy. I was struggling (and still am) with the prospect of facing Christmas without one of my babies and so I needed a project to keep me busy. Since losing Holly I have become part of a community on instagram and facebook. Although I wish I never had 'met' these people I am truly thankful to have so many wonderful mamas and papas around the world who I can relate to. This Christmas I decided that I wanted to include them in a project. I wanted them ALL to be remembered and honoured. And so 'The Tree of Remembrance' project was born. I decided that I wanted to create a Christmas tree decoration for each baby to then hang publically. I needed them to be seen by the public beacuse it is part of Holly's legacy, increasing the awareness for pregnancy loss and breaking the taboo which surrounds it. I started searching for what decorations I could make and I put a shout out on my IG and FB pages for any parents who would like to take part. The response and love I recieved was overwhelming and spurred me on with my motivation to do something good this Christmas. After searching different sites for 'weatherproof' Christmas decorations, I came across a beautiful page on making snowflakes out of wooden pegs. This felt just right to me, creating something beautiful out of something ordinary. The link to the page is here should anyone wish to make their own this Christmas! My next challenge was finding somewhere to hang the decorations. Sadly, it was extremely disappointing to find that so many places wouldn't give me permission in letting me hang the decorations. I must have contacted well over 10 places to be told various reasons as to why they couldn't. I got a plain and simple 'no we cant help you' to a 'no it conflicts with those women who can't fall pregnant' (I still don't understand that one!) to a 'no we cant as then we would have to do it for everybody.' Every no I recieved was extremely saddening to me. I had 33 snowflakes to hang in total and I really was so sure someone would help. I decided not to be defeated as the constant 'no's' just encouraged me even more to help break the taboo surrounding baby loss. So I decided to just 'wing it' and I went down to my local, beautiful park today and hung them on a tree over looking the pond. We had lots of people walk past and comment on how beautiful they are and I am proud to say that many of them had tears in their eyes when they heard of the story behind the project. I really hope that they dont get taken down too soon. We don't have permission for using the land but for the time they are there I KNOW that they will bring a lot of love, tears and hopefully encourage people to start talking when it comes to the topic of baby loss. I also decided to set up a donation page to cover the cost of making the snowflakes waterproof with the rest of the money going to ECHO, a charity which is very close to my heart. Evelina Children's Heart Organisation (ECHO) based at Evelina Hospital, London, diagnosed Holly's poorly heart when I was 20 weeks pregnant and provided much needed love and support for the 5 weeks that we struggled on. The care and support that they provide is so very important to the parents and the children who are diagnosed with heart problems. After Holly was born I managed to raise a little over £1000 for them and I have made a promise that I will continue to support them for as long as I can. If you would like to make a donation then please follow this link, I would be so very thankful. Now on to the important part, our babies! 33 snowflakes made to remember 34 beautiful babies. Mama's and Papa's it was an absolute HONOUR to be able to do this. Some of these babies I know so very well and some less so but I want you to know that they are all so very loved. I tried my hardest to make sure each snowflake was perfect for them. I have tried to keep families of babies together as much as possible and so you will see in the gallery that there are some groups of snowflakes together as well as all singles too. Being able to honour your babies has given me something positive to do this Christmas. Holly isn't here for me to mother and so doing this project has really helped me in being able to 'mother' her in a different way. Thank you so very much and know tonight that our babies are playing in the remembrance tree together, swinging on its branches, watching over the ducks in the pond and gazing at the stars.
It has been an honour. Kirsty x 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 Angel Memory
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. This quite possibly is the hardest blog for me to write so far. I have avoided writing this one up until now but as much as it destroys me to acknowledge the birth of Holly, it so very important for me to share this.
When my I found out that I would be induced to deliver my stillborn baby, I searched and searched on google to find peoples experiences to help prepare me for what would happen. Being a midwife, I thought I would already know the answers, but I didn't. I didn't know how it would feel to deliver a stillborn baby. My eldest daughter was born via a suction cup and I couldn't feel a thing for having had an epidural. Going through labour for my stillborn daughter terrified me beyond words. How long would it take? Would I still have to get to fully dilated if shes only 25 weeks? What happens when shes here? How long do I get to keep her for? I found some information online but it was only really through speaking to a friend of a friend that I got the honest answers that I needed. While some people live in denial or don't want to know what will happen (which is fine!) the honest answers were exactly what I wanted. I remember when I was pregnancy with my eldest, I had all these expectations on what labour and motherhood would be like (I soon came to realise that it is nothing like what 'they' say!) and I made a promise to myself that I would only ever be honest from there on out. I appreciated the information that was given to me so much that I knew one day I would need to share my experience too. A lot of what went on the day Holly was born, I had forgotten. For about a week after her birth I would sit there and be able to vividly go through every single thing that had happened. I cried to my husband numerous times because I was terrified that I would forget all the details, I didn't want to forget any single thing about that day as it was the only thing keeping me close to Holly. I decided to start a diary 2 days after having her. I wrote down everything that had happened so that I knew I would always be able to remember. Since then I've written in Holly's diary whenever I have wanted to remember something or talk to her. I keep it hidden away in her memory box and I hadn't yet re read anything I had written, until now. I won't share it all because like I have said before some parts are too precious but I do want to share the parts that might help others, as these are the parts that helped me, prior to September 7th. On the day a star was named; Having two days previously taken some tablets to help induce labour, myself and my partner turned up on the labour ward ready to have our baby. As soon as we had pressed the intercom to get through the security doors, we were met by our bereavement midwife and swiftly taken to the room we would be staying in, which was separate from the other labour rooms. I will always remember how thankful I felt that they were there, ready for us. We didn't have to make any awkward conversations about who we were or even walk past a lady going through labour. It was the little things like this which make a devastating situation a teeny, tiny bit easier to process. The room we were staying in was lovely. Much like a hotel room joined by a bathroom to a more clinical 'delivery' room. It might seem irrelevant what the room looked like but it actually isn't irrelevant at all. That room was to be our 'home' for the next 24 hours and where we would make our memories with our daughter. It was to be her first home and the place which I will remember for as long as I live. I remember feeling like, although I was there, it still wasn't real. I could talk to the midwives without crying, I could laugh, a little bit of me even felt excited because I was still going to meet my daughter. It felt like a special day, like something out of the ordinary and something to be cherished. Of course I was nervous and inside my heart was preparing to break but it surprised me how much I was coping. I had something that I actively needed to do, I needed to deliver my baby and that was what kept me focused and through the next few hours. After numerous blood vials had been taken from me and a quick examination, I was given a pessary to help my body get into labour. My husband and I decided to try and keep ourselves distracted so we played games and chatted. Anything to take our minds off what was happening was a blessing and much welcomed. I was due to be given another pessary in 3 hours time but after only an hour or so I started to get contraction pains. I knew it was the start of it all but I didn't tell anyone. I didn't even tell my husband at first. I wanted to drag this out for as long as possible because I wasn't ready to not be pregnant. I wasn't ready to accept what was happening and I wasn't ready to meet our daughter. So I ignored the pains and I carried on acting as 'normal' as I could. Suddenly though, the pains rocketed and my focus was dwindling. We called the midwife and we discussed pain relief. I opted for gas and air as I didn't want to be spaced out for when my baby came. They offered to give me strong analgesia but I knew I wouldn't have long with her and I wanted to be as aware with her as I could, I didn't want anything affecting our time together. I knew the labour was progressing quickly and with wanting to carry on being pregnant, I ignored the increasing pressure to push for as long as I possibly could. Four hour after my induction had started and after a 24 minute labour my second daughter was born into this world. I won't lie to you, it hurt. It hurt a lot. The contractions don't feel any less because it was a shorter labour and the pushing, well, I take my hats off to you ladies who have delivered a term baby! I turned into something of an animal, I truly thought I was dying. Holly was born in her sac. She had come out completely protected in her waters, membrane and placenta so we couldn't yet see what she looked like, only the outline of her shoulders and head which was covered in tiny black hairs. I remember thinking that this right here is my entire pregnancy. This is what I have been carrying for the last 6 months. Our midwife got an amnihook and broke the membranes revealing my daughter. My beautiful, fully formed little daughter. I couldn't talk. I couldn't cry. I felt like everything was suddenly moving in slow motion. I knew my husband was there, distraught, but I couldn't comfort him. I knew the midwives were moving Holly on to my chest and I don't remember breathing but I must have. Slowly it all came into focus. My husband cut Holly's cord and I sat there and just cuddled and cuddled her. She was perfect. What followed were the most precious moments of my life. We dressed our daughter in the most beautiful dress my sister had made for her and wrapped her in a blanket my mum had lovingly made. We cuddled and kissed her. We took photographs ourselves and we had photographs taken professionally from the hospital and supporting charity. We took hand prints and footprints. We cut a lock of her hair. I spent time alone with her and read her a story. I wrote her a letter. The care the midwives provided for us and Holly was meticulous. Every single thing we could do for Holly any single memory we could make, we did. We spent the night with Holly and left the next day. Saying goodbye to my daughter was the hardest thing I have ever done. I didn't want to leave her. I didn't feel right and it went against what every part of my soul was saying. It screamed out for us to stay together. We left with our memory boxes and details on how to register her birth and death. It was the hardest thing I will ever do. I can't share everything. Some of it is just too hard but I will share what I can as the friend of a friend did for me. It's the little things, the honest things and the kind things that keeps this world turning and saves people when their lives are in turmoil. I will share, support and spread love to those who need it, whenever and wherever I can. Four weeks after Holly's birth some friends came to visit me. They had done something truly special. They had given us a star name deed. Star 1406112 - Aquila, named Holly Dao - 7th September 2016. On the hardest day of my life, on the day my daughter was born, a star was forever named, my life forever changed and a legacy forever born. "But then there was a star danced, and under that I was born" |
Holly DaoOn the 7th September 2016 at 25 weeks gestation, Holly was born, still after a battle with complete heart block. Archives
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