We all have our own notions of grief. Prior to losing Holly, I can honestly say that I had never experienced it. Grief isn't something which is talked about much, until it happens. I expected sadness and pain but I didn't expect the silence.
My grief feels like silence and it has done ever since this all began. Scans filled with silence and silent car journeys between my husband and I. Silent tears as my gut instinct told me Holly would never survive upon hearing her diagnosis.
Silence when Holly was born. Where were her cries? Where was the excitement? Where were the cries of joy? Silence when I cradled her in my arms and cocooned my body around her basket when I was no longer able to hold her. Silence when we left the hospital with just a memory box.
Silence when we registered her birth and death, silence when we sat in the funeral home picking out her coffin and silence when I kissed her goodbye for the last time. Silence at the crematorium and silence where there should be two babies in the house, not one. Memories of Holly filled with silence.
Just so much silence.
There can be as much love around you as you could possibly ask for when you lose a baby. There can be so much love, sympathies and well wishes but it doesn't stop the silence. It's a silence which you so desperately want to be filled but it cant, so instead the empty silence travels through your universe with no destination and no signs of halting. Just a constant hurtling comet of silence.
Some days the silence is so loud. It is so loud that it is consuming and exhausting. Its an ear shrieking, high pitched silence with nowhere to go and so it just reverberates inside you, aching and hurting. An unwanted silence, a much present emptiness.
Some days the silence likes to play. It will hide and hide well. Your day is filled with much welcomed noise and distractions. And then you pause and wonder where this relief has come from but block out that thought as if scared you might suddenly jinx it into showing itself. But you needn't worry because it does, eventually.
People can tell you that you aren't alone. After all, you are not the first to lose a baby and you wont be the last. And whilst it can bring some comfort to hear the support, every loss is different as is the grief. I have learn't that there can be no expectations in grief as my silence wont reflect someone else's loss. There quite simply, is no normal.
I don't like my silence but it is my personal reminder of Holly, as if I could ever forget. And I would always chose having it over having never 'had' my Holly. I think my silence is really just my love for her after all.
But I do wish I could chose to have Holly here and banish the silence all together.
Rewind to 2003. I am 12 with no idea of what I want to do when I get older. I am still young, so that's okay but when we receive the exciting news that my sister is pregnant, suddenly that 'no idea' turns into a spiraling desire and interest into the world of midwifery. I am fascinated by her pregnancy and by the welcoming of my (now not so little) nephew into the world.
Anyone who know's me will know that once I put my mind to something then that is it. I will set out, work hard and achieve my goal. And so it began, GCSE choices based on midwifery, A-Level choices based on midwifery, shadowing at the local maternity ward, watching my baby brother being born and doing anything that I could to best 'prepare' me.
A gap year and three years later, I had somehow made it through the difficult degree. I was a midwife. It was suppose to be everything I wanted but yet it started to go wrong. I was poorly, ALL the time. I felt sick, my tummy hurt, I couldn't sleep. I started taking sleeping tablets and setting myself strict bedtime routines but nothing helped. My immune system was forever letting me down. I didn't understand how I could do such an important job based on only a few hours sleep. I was terrified of missing something and being responsible for something serious. I just wasn't coping.
I HATED letting people down but almost every day was a struggle. I lost my confidence and became withdrawn. Almost every week another illness followed by a further lack of sleep and exhaustion. I felt like an absolute failure, the worst midwife. I loved looking after the couples at work but somewhere in my brain and immunity there was a deep block and how do you explain to someone what's wrong when you don't even really know yourself? Was it the long shifts or the naturally stressful environment? Was I just being pathetic and not 'getting on' with it? Was it the short staff shifts (of which I was partially to blame) or was I just rubbish? I really didn't know.
It wasn't until I had my eldest daughter that it started to come out. Anxiety. Was it caused by the job or just a chemical imbalance in my brain? I didn't know but cue the anti anxiety medication that not only started to help my professional life but also my personal life too. Brilliant, I thought, fresh start, maybe I can actually do this now.
Then my world crashed as I had Holly and the final part to the puzzle was solved. Sjogren's syndrome, the reason for my compromised immunity. It was bittersweet that I could now understand my body better and understand how to manage it. I understood why I had struggled previously.
But there was a new problem. How can I go back to being a midwife and caring for other couples and babies when my own little Holly is no longer here? Every day would be a reminder. Every day would be hard. Every day would be a slap in the face. How do you cope when people complain that they haven't been discharged yet or haven't yet been seen by a doctor when they have their healthy baby? How do you stop yourself from screaming at them 'AT LEAST YOU HAVE YOUR BABY?'
I don't know. I still don't know that answer. It feels bittersweet that I finally understand how to best look after my body, be a better midwife, colleague and what medications will help to be replaced by the reality of 'can I even do this now?' I don't know if I will ever be ready.
For those of you who have read my past blogs, you will know that back in February I was honoured to ask to speak at a baby loss conference at Bradford University, as a midwife and as Holly's mummy (https://m.youtube.com/watch?v=NPESa7vHBcA) Following on from that I have been asked to speak at Surrey University in July on baby loss too. It is an absolute pleasure to tell Holly's story to anyone and equally this unexpected path has lead me to a new passion, baby loss. A topic (which requires its own post as I can't go on about it enough) which is just so bloody important.
I know where I 'belong' in this midwifery world now. Despite the stress, anxieties and hours spent crying over why am I doing this, I now know why. This path (albeit bittersweet) has lead me to my passion and my midwifery degree will no doubt help me in doing what I need to do (whether it be bereavement midwifery or something related). There was no 'reason' for my daughter to have to die but there was a reason I chose midwifery and a reason why I didn't give up.
In Holly's memory, out of my love for her and from this burning desire in my heart, I WILL support bereavement care. I WILL help bereaved parents and I WILL do what needs to be done to improve the services.
And anyone who know's me will know that once I put my mind to something then that is it.
When I first started my midwifery career I struggled massively with looking after fathers during times of loss. I wasn't 'qualified' (I had my midwifery degree but not the real knowledge needed for bereavement) to look after mothers losing their babies, let alone the fathers. It was far easier to focus on the practical aspects of looking after the mother than try to understand how the father needed support too.
I was awkward. I made sure the fathers were comfortable but did I really include them in the care of their baby, so very loved and so very still? I didn't. It wasn't because I didn't think they mattered or that they were not sad, I just didn't have enough experience or understanding of how loss affects them too.
But loss does affects them too.
From the very start of Holly's existence my husband has been there. From the big smile he gave when we found out we were expecting, to holding my hand through every heartbreaking scan, to watching our daughter peacefully pass away when I could not watch the screen. He was there when I was induced, he was there when the contractions started and he was there when I was screaming as Holly was being delivered. He was there when we spent time with Holly, he was there when we said goodbye, he was there at the funeral and he has been there every day since.
He was there.
How could loss not affect him? Holly was his blood, his hopes and dreams, his daughter and his heartbreak, just as much as she was mine. There is so much focus is on mothers that I fear father's are somewhat left behind. I remember when the Catholic Priest came to bless Holly at the hospital which was my husbands wish as I am not religious. The priest barely spoke to him. It was all about me and that was awkward and uncomfortable.
People ask how I am doing but yet I wonder how many ask how my husband is doing? Does he get messages from people checking in to see how he is? I may have had to walk around with a pregnant tummy and a lifeless baby and I may have had to endured the pain of labour but he would have taken this pain, had he been able. I can't imagine what it must have been like for him, watching me in pain knowing that there is nothing he can really do to take it away. And while I can take my maternity leave to mourn, my husband was back at work two weeks after his daughters death.
Each experience of loss is unique and whilst mine and my husbands experience are different we also understand each other more than anyone else can. The daily pain, the constant feel of loss and the sadness in our hearts is felt by us both. We both lost Holly and we both miss her, every single day.
I wish I had understood this a little better before Holly. I wish I hadn't neglected the fathers I have looked after in the past. The experience they have in baby loss is so very real and so very raw. They need to love their baby, have the chance to care for their baby and the opportunity to talk too.
It sounds so obvious doesn't it? But in an age where men are told to 'man up' and 'be the strong one' and where death (let alone death of a baby) is viewed as an awkward and 'silent' topic, loss for daddies is on the most part, neglected.
I can't pretend that I know what it is like for a daddy to lose his baby but what I do know is that daddies feel it too.
Daddy matters too.
'There are no words'. I have lost count of the amount of times that has been said to me since losing Holly. And its true, often there are no words as we just don't know what to say. However, this month I was part of something incredibly special. A day dedicated in sharing words, sharing stories and sharing advice on child loss. The charity Our Angels, organised a conference with the Bradford University midwifery society on bringing an understanding of baby loss to midwives and student midwives. It was the first of its kind and I hope the start to other universities and hospitals acknowledging the importance of care for those going through baby loss.
I met Chris Binnie from Our Angels on a facebook site for bereaved parents (Otis and friends - childloss support, set up by Natalie Oldham) and was truly honoured that he asked me to come and speak. I was invited to come and speak as a mother to Holly but also as a midwife. Having experienced both it was felt that I could bring another aspect to the day, two sides to the same coin. Prior to Holly, I wouldn't have dreamed I would have the confidence to speak in front of 400 people but after losing a baby things suddenly don't seem so scary. I spent a month writing up my speech and practicing it over and over to my husband, who by the end of it knew it by heart. As the conference grew closer my nerves set in but I was doing this for Holly and I was never going to let her down.
The conference started with fantastic speeches from the Director of the RCM, a local bereavement midwife and SANDS. It was refreshing and comforting to be surrounded by people who all had the same agenda, understanding baby loss for the better. We watched a heartbreaking documentary, 'Still Loved' and many tears were shed.
Later, Dr. Alex Heazell, clinical director of the Tommy's Stillbirth Research Centre spoke on his work into the prevention of stillbirth and improving care for parents, which left many people inspired. The Saving Babies' Lives Care Bundle was presented by Julia Walker-Brown, the information and knowledge these presenters had was invaluable.
Then there were the parents. My tears started when Chris presented. I knew he had lost his little boy, Henry but hadn't known the full story. I won't share his story, as video's of the conference will soon be available (links will be posted when I have them) and I wouldn't do Henry's story justice but it was emotional. Hearing another bereaved parents loss is just so raw, whether you've gone through it yourself or not. I have no doubt that his story touched the hearts of many students and midwives that day. What he continues to do in Henry's memory with Our Angels is incredibly touching.
Heidi Eldridge, CEO of the Charity MAMA Academy also presented. Another bereaved parent whose loss of her little boy Aidan, inspired her to set up the Charity to promote safer births. Another example of a warrior parent keeping her baby's memory alive every single day.
The tears continued as David Monteith spoke about the loss of his daughter Grace. A truly inspirational man who rightly shows that fathers matter too. You could have heard a pin drop during his speech and his words resonated exactly with how I felt.
Stalls were set up with various charities, proudly showing what they do to support bereaved parents and in honour of their babies. Such charities including 4 Louis, offering precious memory boxes to the parents, Hand on Heart offering precious keepsakes and Otis and Friends providing much needed sibling memory boxes. The care, consideration and honour put in to these charities work is truly inspiring.
Soon it was my turn to speak. In the lead up to the conference, I hadn't worried about getting emotional during my speech, which sounds so silly now. I thought I had learnt how to hide my emotions pretty well. But the day was SO emotional. I had been dealing with my grief privately but suddenly being exposed to grief all around was both comforting and heartbreaking.
Standing up in front of 400 people I realised that sharing Holly's story to strangers was different. These people didn't know Holly's story, they didn't know what happened and how it all ended. I needed to share her story in 20 minutes, from start to end and that was hard. So I was emotional, I had to take pauses and catch my breath. I had moments where I didn't think I could do it but then I would picture Holly's face. If I can birth her and say goodbye to her then I sure as hell can share her story. And I did it, I somehow got through it for my girl.
The conference was unique and inspiring. It has ignited a passion within me for supporting bereavement care and its shown me that people do care. The students who attended that day are truly special. They now have the power to bring a little light in to the worst days of a parents life. Their presence at the conference means that they believe baby loss is just as important as bringing a live baby home. I am so thankful that they attended, they will never know how much it means.
That day will always have a special place in my heart. For the first time since losing Holly, I was surrounded by people who had lost babies. People who I had spoken to over the internet and could finally meet in person. People who I had shared some of my closest and hardest thoughts with were suddenly there in the flesh and it felt like home. No one was offended by what you would say, nothing was too 'in your face'. I was free to say whatever I wanted and for the first time be surrounded by people who absolutely understood and passed no judgement. I 'got' these people and they 'got' me. I met other warriors that day and I am SO proud to call them my friends.
There are no words when you lose a baby. But we created a day full of words, a day full of love to bring hope to future parents suffering loss. And you can create these words too. Share our stories, keep your mind open, be kind to us and listen. Make the words happen and increase awareness for baby loss.
I made firm friendships and my grief was at its most calm that day. No one has to be alone when they lose a baby and no student or midwife has to feel unprepared. The support is out there for us all and I thank Our Angels and University of Bradford midsoc for showing that understanding baby loss can be done and needs to be done. I hope, I really, really hope that this starts a trend as the experience of losing your baby is just too important to not get right.
To all the babies honoured that day and my darling Holly. I know we did you all proud. X
Most people expect you to take some time to grieve when you lose a baby. They expect that for some time you will be sad, you won't reply to messages and will keep yourself to yourself. You will be silent. But it comes to a point where some people expect that the silences will last less and become less frequent.
I have experienced this expectation from people. In the last month or so I have been called rude for not replying to messages when my daughter died. I have been called self obsessed for not replying to people and I have been called unsupportive and inconsiderate in not replying to friends problems right away.
People seem to expect that you reach a certain amount of time after your daughter has died where you should be able to get back to normal and act as you did before. What people don't understand is that you can never go back to normal. Your normal has changed, and as I recently found out physiologically changed after experiencing trauma. The change is a deep, soul altering change.
It is very hard when your grief comes under attack. I have gone on weekends away, been to parties and had nights out since losing Holly. All which comes with its own level guilt as how can I be doing this whilst my daughter will never do these things? I spent time messaging a 'friend' throughout her labour whilst my own daughter was dying but still in some peoples eyes, all of this is not enough of an acceptable behaviour.
Holly's death has been used against me. I have been 'told off' as people were there for me and yet I can't always be there for them at that precise moment in time. Sometimes it takes a few days to respond to a friends problem. It doesn't mean I don't care, it means I am trying to get through the day. I am trying my best. However, my daughters death is not a weapon. And friendship isn't giving to then be owed something back. It's giving because you care.
After I had received some of these messages, I spent ages going back through every single message on FB, IG and text to check I had replied to everyone who sent me a message when Holly had died. I became paranoid. I became worried that I had upset people and that everyone saw me as this rude, uncaring person. I didn't not reply to people because I wasn't grateful for their messages but quite simply, I had just given birth. I was registering Holly's death and I was planning a funeral whilst trying to be as normal as I could for my eldest daughter. I was trying to hard to just find the strength to get up each day, strength which is still required and will be needed for every day I am living.
Some friends have had their own hard times and sometimes I still can't reply right away. I have always responded though, albeit days later. For most, they understand but for the rest this isn't good enough. This was when I realised that some people 'get it' and some people just don't.
If Holly was alive, would I be attacked for not replying to a friends message if I needed to spend time with my daughter as I was worried about my parenting? I very much doubt it. This should be NO different just because my daughter is dead. At times my grief takes over my entire being. But that grief is Holly's time. And she deserves her own time with me, just as my eldest daughter physically deserves her's. Of course I feel bad that I can't always reply to people right away but its not out of spite and neither is it done on purpose. I have two children and they BOTH need me.
I am not rude. I am not self obsessed. I am not unsupportive and I am not uncaring. I am none of those things and my behaviour does not need to be excused anymore than if I was silent over time due to me spending time with my living child. I am so grateful for the people that understand that. But I am not sorry for those who don't and neither will I try to change anyone's mind.
In 2014, my best friend lost one of her little baby girls. It would never have been in my soul to have had such thoughts about her, whether I 'needed' her support or not and whether it was then, now or in 10 years after her daughters death. I quite simply would expect that sometimes, she would need to be alone with her baby and that would ALWAYS be okay. But I guess that's the point isn't it? Some people get it and some people don't. People change when they lose a baby, people's priorities change and people's self care changes. I get that.
I will never excuse my silence. My silence is my time with Holly and so I will embrace it, I will not rush it and neither will I be condemned for it.
They say your phone book changes when you lose a baby, I now know this to be true. Thank you to those who understand that I have changed and sometimes I need time. I wouldn't be a midwife if I didn't care and I wouldn't be trying so hard to share Holly's story to help others if I didn't care but sometimes Holly needs me too.
My silence is Holly's time and that will always be okay.
It has been over a month since I last posted. I had been having a little bit of a wobble. Maybe it was the stress of Christmas and the New Year which at the time I thought I had coped with well but as it is the way with me, the stress always comes out some how.
Of course I am a parent to my firstborn. I know that because she is here and she finds great delight in shouting 'mummy, mummy, mummy' at the top of her lungs. I cook for my firstborn, I cuddle my firstborn, I play with her and I put her to bed every night. She is my little shadow and so there is no doubt that I am her parent.
My wobble was about Holly. I was worried about her. There are no guides or handbooks in how you parent your baby who isn't here but the need to parent doesn't die with them. The innate feeling to mother and to care for Holly is just as strong as if she was here, living and breathing.
I have tried incredibly hard since losing Holly to keep her memory alive. This blog attempts to keep alive, I share her pictures, I talk about her, I fundraise, I increase awareness and in my everyday life I have her all around my home. But I still didn't feel like a parent. I couldn't do all the things with her that I do with her eldest sister. I worried that I didn't do enough.
I started second guessing my parenting of Holly exactly how I did with her sister when she was born. I worried I didn't go to her spot at the crematorium enough. I don't go every day but did that mean I was letting her down? Other than the pictures around my home, I don't actively look at ALL her pictures everyday. Does that mean I wasn't caring enough for her? I don't look at her memory box every day and I don't cuddle the teddy with her ashes in every day either. The truth is, I can't. I don't bottle my grief up, far from it but the moment I hold her ashes I fall apart. And as other grieving parents will know, picking yourself back up when you have a fall in your grief is exhausting, its traumatic and just so bloody hard to do.
Shortly after all these worries started I was approached by a wonderful Dad who lost his little boy, Henry. He asked me to come and be a speaker at a conference discussing bereavement and baby loss support. I am not a public speaker and I knew I would be nervous but after losing Holly, I'm not scared anymore. I have been through one of the worst things and I am still breathing and so I know I could do this.
This last month I have been putting together a speech for the conference which is in 3 days time. It took me a long time to write and a lot of my honesty, heart and soul has been poured into it. That's when I realised I was parenting Holly. The time I was spending sharing her story was parenting her. The time I've spent practicing the speech, is parenting her. My dedication in increasing the awareness and support for baby loss is parenting her.
As with my firstborn, I have realised that there is no rules on how to parent your baby, whether they are here or not. It doesn't matter how you spend your time or how you chose to honour them. It doesn't matter if you do a lot or if you do a little. What matters is that we keep going and we say their names. We keep them alive within us but we don't have to prove ourselves to anyone.
I have realised that I AM Holly's parent and as with my firstborn I am learning. Learning every day how to parent on our own special journey.
I love you my little heart
2016. The year that SO many souls left this world. The year that saw the UK divide and shortly be followed by a division with the USA. The year that so many people want to be over. I have seen so much hate and sadness this for year. So much desire to just move into the next and 'write' this year off. I could have alot of hate for 2016 and a desire to just 'forget it' but I dont and I want to tell you why.
I feel honoured for there to have been so many souls on this earth. So many souls who touched others through their music, comedy, sport and acting. We can't prevent death but we can feel appreciative that this year, we remember the beauiful talent our world has. The beautiful souls who we are sad are gone but blessed to have been touched by their work. The souls whose legacies will be remembered and continute to inspire, truly a year of legends.
The divide within the UK and the USA has shown me how lost we all are. Regardless of anyone's political beliefs, the results this year paint a picture of anger and the despearation for people to search for something better. The results won't change and we can't force people in to a different way of thinking but we can pull together and put our differences aside. We can show the world that having a difference of an opinion is 'okay', it's what you chose to do from there on that matters. Do you chose to fight or work together to create something beautiful?
Positivity doesn't change the past and it might not change the future but I know that in a world full of alot of hate, sadness and regret, sometimes a positive mind is the only control we have. I don't want to be surrounded by a 'cloud' of 2016 when actually there is still SO much to be thankful for.
My baby died but I am happy to have met her and I wouldn't change her existence or swap her for a living baby. Out of something so hard and so destructing, I have been shown a deepness to life and the roots of where love come from. I wish Holly was here but I don't think she was ever suppose to be 'here'. My daughter was meant for other things, she was meant to spread love and share kindness. She was meant to show that life isn't a darkness and life needn't be full of hate. I will ALWAYS wish that she was here BUT she isn't. I will miss her for always, my heart will always be broken and my life always incomplete but I refuse to let the idea of a hated 2016 break me. I refuse to let her legacy die with her.
In 2016, I married my best friend, my soul mate with both of my babies present. In 2016, I met my second daughter and my heart exploded with love. In 2016, I have been surrounded by so much kindness from friends and famiy. In 2016, I watched my first daughter grow in to the most beautiful toddler. In 2016, I remember the famous souls who inspired us and the not so famous souls who inspired us too. In 2016, I chose to believe that it's what we do with a situation not the situation itself that defines us. In 2016, I feel pain but I turn it into kindness.
There is still SO much to be thankful for and so much love to be given.
Holly Dao, in 2016 you chose me to be your mummy. I am SO thankful and I wouldn't change that for the world. Thank you for showing me how to turn darkness into light and thank you for showing me that 2016 needn't be remembered with hate.
How will you remember this year?
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.
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?
On the 7th September 2016 at 25 weeks gestation, Holly was born sleeping after a battle with complete heart block.