A story of hope and survival after stillbirth

Where do you start with the hardest and most bittersweet story you will ever have to write? The story of my little darling girl that died, the longed for baby that we tried for nearly three years to become pregnant with, the little sister our older daughter Bella was so excited to meet, to finally be like the other children in her class, all with siblings. The second child we would love with all our hearts and watch grow up, a last little cub to complete our family, that didn’t get to come home.

I guess I can start with her name, Xian Hui Hale (pronounced ‘Si-en Hu-ey’). I am half Malaysian-Chinese and this is the name my family chose for her out in Malaysia, as is tradition, in line with the time and date she was born. Her Chinese name would not have been her first name, and in fact it would not have been her name at all, if she had been born when she should have been, in late July/early August, rather than on April 13th 2017, when I was 24 weeks pregnant, without her heart beat. But there is so much to decide and fathom and navigate and survive when you have a stillborn baby and you can only do your best with what you have at the time.

Our oldest daughter is seven this month, and we started trying for a second baby at the start of 2014, when she was three years old. We suffered a miscarriage that summer and then could not get pregnant for nearly three years. We went through thousands of pounds of fertility treatment- that’s another story I told on Annabel’s nurturing platform, two years ago. How sad, that I also told the story, one year ago of juggling motherhood and business and included the fact, that I would soon be a mother of two, when I was expecting Xian Hui. And now, in 2018, I am telling the story of stillbirth and baby loss.

– All four of us (I was about 10 weeks pregnant and feeling rough!) –

I think you could say the hand I have been dealt is officially, well, shit – I have suffered early miscarriage, secondary infertility and stillbirth. Others have experienced worse, much worse, but I think with stillbirth, you step into another level. The level of becoming ‘those people’, the people who’s baby died, the lady who had to deliver a dead baby.

No one wants to be that lady. No one knows what to be around that lady. But despite all of that, this is a story of resilience. It is Xian Hui’s story, my love story to her, another way that I can mark her existence in the world.  I also want to raise awareness and understanding on the subject of baby loss and neonatal death and proclaim my solidarity for those, often quietly, grieving for a child. I want to break the taboo of talking about baby loss and still birth and not hiding it away – to offer a tiny glimmer of support for others going through these darkest of dark times too. I want others to know that you can find joy once again, life goes on and it can be good. The longing and sadness for that baby does not ever disappear, but you hope, laugh and enjoy yourself again – you can and you do.

I am nine months into this journey and I probably still cry most days – but those dark, early days, when I obsessively watched footage of a blackened, charred, Grenfell Tower burning against a perfect blue summer sky, the day after her funeral, because it was the closest representation of how I physically and mentally felt – are, I think (I hope!) now over.

Those dark, early days, when I obsessively watched footage of a blackened, charred, Grenfell Tower burning against a perfect blue summer sky, the day after her funeral, because it was the closest representation of how I physically and mentally felt – are, I think (I hope!) now over.

We found out I was pregnant with Xian Hui on the 26th of November 2016 and it felt like a wonderful dream after so much anguish and pain of years of infertility. We still have the video of our daughter Bella jumping excitedly up and down after we told her she was going to be a big sister and it really was like walking around on cloud nine everyday with my baby growing inside me. The weeks seems to race by and before I knew it I was having my 20 week scan the day before the 2017 Most Curious Wedding Fair, of which I am founder and organiser. They said she (we didn’t know ‘she’ was a she until the day after she was born – but more on that later) was measuring small and to come back two weeks later. Maybe this was significant, we will never know. But two weeks later, she seemed to have caught up and we were signed off as fine. Two weeks after that, we travelled down to Norwich for the second leg of the wedding fair, as a family of soon to be four. The windows were down, we were singing to the radio, the sun shining and Spring was coming. We were so happy.

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But that evening at dinner, I started to realise I hadn’t felt any movement for too long. I ordered a knickerbocker glory thinking the sugar and coldness would sort that out. But nothing. Or maybe something? Not the dramatic kicks and turns I had been used to. That night, I lay on my bed in the glamorous Travel Lodge, hoping she would move – turning and prodding my belly. And there was the occasional lurch, which now breaks my heart, as I don’t think that was her, maybe some sort of contraction, or worse? Just her poor little body falling as I turned. I woke John up and whimpered that I still couldn’t feel anything, but we both decided those movements meant it was OK.

I had the show to work at the next day, so had to get on with everything. But throughout the day, I found myself continually telling everyone I wasn’t really feeling anything. I drank coke to see if anything happened, stood next to the speakers, just, anything to try to glean some response! As I was rushing around, the day quickly came to an end and we drove back to the Fire Pit camp, where we were spending two nights with my sister and her husband, as an Easter holiday – and end of show treat. Again, we sat in the sunshine and I felt relief that the shows were over for another year and had been a success and life felt good.  But, the nagging feeling, the stillness…

That night, I lay there with tears streaming down my face and I think at that point I knew.

I could not bear to think it, and pleaded for it not to be the case, but something was not right.

In the morning, I rang the Norwich and Norfolk hospital – the same place, ironically, where Bella had been born six years before, and they advised me to come in so they could check what was going on.

This next bit is hard, I don’t even know if I can write it. This is hands down of course the absolute and utter worst moment of my life. Mine and John’s lives, forever. The midwife was lovely, and reassuring, but she put the doppler on my tummy and couldn’t find anything. She said she needed to go and get the proper scanner and went out of the room. I knew, I just knew.  John was still saying ‘it will be fine, it will be ok’. But tears were already beginning to roll down my face and I was shaking. The nurse came back in to the room and started the scan. Nothing can ever ever prepare you to see that little body, that two weeks prior, you had witnessed bouncing and kicking around, with four chambers of heart pumping away like crazy, 0nly this time, totally still. Totally, totally still. She then had to go and get a consultant ‘to check’. The lights were dimmed and the screen was turned away from us. I remember it almost like an out of body experience – I looked up at John’s face as he stood next to me on the bed, he stared defiantly at the screen, willing her to move, his hand clenched in a fist over his mouth. We both dared to look at each other, and we both knew. And then the words, the words that change everything. ‘I’m so sorry, there is no heartbeat, your baby has died.’

The first words I remember uttering were ‘how are we going to tell Bella?’ How the f*ck do you tell a six year old that their baby brother or sister has died.

I remember John just shouting ‘NO!’ – and almost accidentally punching me in the face, as his fist hit the bed repeatedly. It was horrendous. I said nothing. I think I was shaking my head and I remember crawling, edging up the bed, feeling like this is a nightmare, this isn’t real, I can get out of this, I just need to back away from this scene in front of me.

We had lost her. It wasn’t that beautiful time anymore. It had been ripped from under our feet and the world went dark. The first words I remember uttering were ‘how are we going to tell Bella?’ How the f*ck do you tell a six year old that their baby brother or sister has died? She doesn’t even know that is a thing. Babies don’t die! People get pregnant and have their babies – her friends got their baby brothers and sisters. What kind of mega injustice and unbelievable sadness is this?

That was all I cared about; how do we get our daughter Bella through this? But first, and very quickly I was told that someone would come in talk to me about ‘the plan.’

I remember saying ‘just knock me unconscious and make it over.’ Looking back now, I am so glad that is not what happened. I’m honoured that I got to birth my little girl and bring her into the world and meet her and hold her – they are precious memories. Ten minutes prior to having to think about ‘the plan’, I was simply a pregnant person. Now, and in the blink of an eye, I had been told the baby inside me had died. This was unchartered territory. Absolutely terrifying unchartered territory. And I want to be frank and honest – going through a labour that results in a stillborn baby coming out of your body is probably a situation your initial reactions would be to avoid. But at such advanced gestation, this really is the only option – and is the best thing for your body to process and ‘understand’ what has happened.

So we had to wait for all sorts of blood tests (which didn’t really show anything major other than my liver bile salts were high which can be dangerous but nothing conclusive) and didn’t end up getting back to the campsite until around 7pm and then travelled back to London and arrived at UCLH, my booking in hospital, looking like actual tramps, to take my first dose of medicine to start loosening everything up. Disheveled red faces and exhausted from crying, muddy weird camping clothes on and no one really wanting to deal with us – we got passed through several wards and departments and had to keep explaining what had happened and why we were here, which wasn’t great. Finally the right person came to us and they double checked again it all and gave me the meds. Then I was to come back three days later to be induced.

After those agonising three days, it all happened very quickly in the end once I was back in the hospital and had been induced. Within three hours I was in an insane amount of pain, much more than I had ever experienced delivering my daughter Bella. Bella had got stuck and I eventually had to have a spinal block pain killer followed by forceps, so I never got to the ‘transitioning’ phase with her,  and unbeknownst to be me, that is what this searing pain was being caused by as I attempted to deliver little Xian Hui. I don’t think the midwives really expected it to happen so quickly and had actually left me and John in the room alone as a poor lady in the next room in the same position as us, also with a butterfly on her door, was ‘more advanced’ than me. The contractions were basically just happening on top of each other and completely unbearable so let’s say I ‘lost my shit’. John ran out of the room to try and get someone to get me some pain relief. I think I screamed ‘OH MY GOD I’VE GOT TO PUSH’ to the audience of an empty room – but push I did and she came out. I was covered in blankets and had leggings and still had my knickers on – that is how much nobody thought it was happening yet.

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But I now feel so very proud of that moment – no pain relief, just me and her, our moment together.

She gave me that, despite the fact she wasn’t a baby that I got to take home, we did it it together and I felt like a complete champion. The opposite of what I felt when Bella was born, completely medicated, surrounded by doctors, midwives, surgeons, I couldn’t feel a thing and I felt like a failure at the time (in hindsight – I no longer care about that – my view is, if you can get an alive baby to come out of you, that is definitely the most important part of it all). But  me and Xian Hui changed all those feelings together.

The midwife ran back in, her name was May Ling, as fate would have it an older Malaysian-Chinese lady, who reminded me of my aunties, and she was so lovely with Xian Hui.  John had also ran back in and just basically half hugged me, half blocked me from being able to see anything as we had both agreed we didn’t want to (and that they had also said we didn’t have to straight away – or even at all). We were taking it one step at a time, processing second by second. But I could see the midwife’s face behind John, and I just looked at her like, ‘help me, I don’t know what to do’. She stroked my forehead and I heard her muttering, ‘I’m sorry little baby’ as she did everything she needed to do.

We had put together a little blanket my mum had knitted for Bella’s dollies, a photo of us three, along with my own Chinese jade bracelet, traditionally given to new babies to protect them from harm, given to me when I was tiny.  I asked May Ling if she could make sure it stayed with the baby and I was in such a state of shock I didn’t really go in to asking her about her heritage but I like to think she understood why.

We are her parents and if nothing else, parents have to put themselves last and their children first and do what needs to be done for them.

So next up on the list of terrible decisions you never wanted to have to make, is do you meet your baby, do you find out if it was a boy or a girl and do you want to name them? Like I said, now of course my mind is adjusted to this new normal of holding a stillborn baby, and remembering her in the past tense and her still being a member of our family in a different way. But in those first few hours and days, you are still grieving for everything you thought would be and utterly shocked and devastated not to mention having been through a huge and traumatic physical process.

– Nanny, Aunty and sister making funeral flowers. Our daughter Bella had really bad chicken pox –  yes it was a very bad week! – 

We didn’t necessarily want to meet our baby – we were thinking more ‘self preservation’ – what if it’s been a almost a week now since she died and she doesn’t look in great condition and we see a version of her that we didn’t want to see that will stay with us forever? What if it’s just too hard? What if we can spare ourselves this sadness, on top of all the other sadness we’re dealing with? But in the end, we decided to do it for her. We are her parents and if nothing else, parents have to put themselves last and their children first and do what needs to be done for them. She deserved it, so we would do it. It was far from an easy decision for us – I would never ever judge someone with how they deal with this situation themselves, whatever decision they make.

I had longed for a girl more than anything. My closest friend in the world is my sister and I wanted that special relationship for Bella too. I thought especially because there was a six year age gap, that this would be the best chance they would have of being close now and as adults. So I was frightened of finding out if she was a boy or a girl, it would just hurt too much. But ultimately, we felt that if we were going to meet her, we need to know. So the midwife told us, and I wailed and wailed. I had felt sure it had been a little boy as my pregnancy had been so completely different this time. Finding out I’d been carrying a baby girl was a real shock. And I was just so gutted, so close to living the dream. So close but now so far away. My actual dreams would have come true – but now, they had been ripped away from me all over again.

But then we met her. We were so scared, so so scared but the minute we saw her we just loved her and we were no longer frightened. She was our cub, our poor darling cub.

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I wailed again as she looked so much like Bella. I wasn’t expecting that. It must be the same wonder and astonishment every parent must feel when they see their second child for the first time, that they look so much like their big brother or sister, how beautiful a connection that is. But of course for us, just a cruel and bitter blow, there she was, the little sister, the real little sister of Bella, the mixture of us all over again.

But we couldn’t have her. John held her first in her little basket, wrapped in the white blanket, and one of his tears fell on her closed eye and it almost looked like she was crying too. I don’t know if that was good or bad, but I remember it vividly. Her little hands, also just like Bella and Johns, were neatly crossed over the top of the blanket and she looked like such a gentle little thing. John said she looked more like me than Bella does. She was beautiful (this is not related to previous sentence!), and she was scrappy and small – but she looked like one of us all the same.

I couldn’t hold her too much, it was too painful and I was worried about dropping her as well, can you imagine?? John felt much more at ease with her and sang you are my sunshine to her as he hugged her close, the song he sang to Bella when she was born and to send her to sleep as a newborn. Just, all the tears.

I didn’t feel so much of a need to hold her – I felt that I’d held her close for six months, felt her move and interact with me and as intertwined as you ever can be, so for me in some ways, that was not her. But I am so glad we did meet her, our little darling. We have pictures of her as well, but we have not looked at them yet, I don’t know if we ever will, we don’t really want to erase the real memory of that day and replace it with photos. But it’s a comfort to have them, maybe one day Bella can see them. Those photos were taken with cameras and USBs supplied by an amazing family who lost their little boy Louie, who now raise money to supply hospitals the means to give these mementoes to grieving parents, as well as memory boxes to keep them in, to not leave through those hospital doors completely empty handed and empty hearted. I was blown away by this brave and courageous gesture and that is why we are donating 10% of London ticket sales to their charity 4Louis.

– Her little hand and foot prints, her name written in Chinese by her aunties, and a card by Oh Squirrel given to me by the Most Curious team –

So yes, that was over nine months ago and it’s still very, very hard. Grief takes you to dark places – some days you’re OK, and some days you feel it gripped around your throat like a real physical pain – you are transported back to those early days once more, when you looked out the window and felt complete fury that the world had dared to keep on turning and the sun had dared to rise that morning, when your little girl had died. But Bella and I now laugh again, John and I dance again – we love each other that little bit harder and know what it is to be in our family because we know one of us got to miss out on it. The sun bursting through clouds, rainbows arched across the sky, a glowing moon, heck even banana pancakes at the weekend, all these things are that bit more heightened, beautiful, breath taking and yummier all because of her.

Life is fuller, those good bits makes your heart burst more than they ever did before because it makes you think of her. It destroys you all over again to think she will not get to experience any of them and she will always be missing from those moments. It sucks, and we wish she was here instead. But really, she all of this things and she is all those moments, that is where she is now and we all love her so very much for it.