19 March 2020

In memory of our beautiful girl who was born too soon, too small and too poorly.

Primrose 1.6.17 – 6.6.17

It is approaching three years since we lost our daughter, but I remember everything about that night as clear as day. My mind will often wander to that time, often when I am alone, driving in the car, or lying in my bed. Our twin girls had been born very early at just 29 weeks. We knew that there were problems as our girls were suffering from TTTS, but we never let ourselves think about the reality of what this actually could mean. I was discharged from hospital on the Monday night, 5 June 2017. I remember the feeling of leaving hospital, feeling as though my heart was literally being split in half, leaving hospital without my babies, which seemed like the most unnatural thing in the world, but knowing that my two big girls needed me at home. I remember sobbing all the way home, then getting home, drying my eyes and waiting for my big girls to come home from school and nursery. I remember seeing cards and flowers from well-wishers and the amazing hugs given to me by my girls. I remember thinking, "It's ok, we'll get through this, It'll be tough going, but we'll be fine, we'll make it!"

We ordered a takeaway and planned to try and celebrate my first night at home, my husband B was going up to the hospital later and for now we were here, present with our big girls. Then my phone rang. I knew before looking at it who it was, and as soon as I saw the number I knew what it meant. I will never forget the words that were spoken to me "This is Liz, I'm looking after Primrose tonight. She's very poorly. I know you said your husband was coming up to the hospital tonight, but I think you really need to come up. Not right now, but tonight."

I knew right then that my daughter was dying. Before I had even finished the phone call from the nurse, B had gone, he had grabbed the car keys and raced up to hospital without speaking a word to me and I don't think I could have loved him more at that moment. People often say that a mother and father's love for a baby is different, that somehow because a man has not carried a child, he does not feel the same way. I disagree. My husband raced to where he needed to be, by our daughter's side and I can never thank him enough for that.

I made the calls I needed to make to our family and within minutes my parents were by my side, one to look after the older two, one to drive me to hospital. I have to admit I didn't want to go, I knew what I was going to; I knew I was going to that hospital to watch my girl fade away. My two older girls had just got their mum back, after a week of turmoil, being passed from pillar to post and they needed me. They had to be physically pulled off me, both sobbing their little hearts out, it was gut-wrenching, but I knew I had no choice. It was one of the worst moments I've ever had.

When we got to hospital things were not good. We were told that our daughter was gravely ill and that the next few hours were critical. Within a few minutes both sets of grandparents were with us, my brother-in-law had driven over to babysit so that they could all be with us. To this day he says that the sight of our celebratory takeaway, sitting unopened and abandoned on the side was one of the saddest things that he's ever seen.

Over the next few hours we waited as small measurements of her vital statics were measured, we were offered a room at the hospital and eventually we sent our parents away and decided to try and get some rest. If anyone had told me I would be able to sleep in this type of situation, I would have said that they were mad, but we were exhausted, I was still recovering from the ordeal of an emergency C-section and we were both physically and mentally drained. Sitting by her incubator was just heart-wrenching, every beep of a machine was terrifying; she was surrounded by doctors and nurses talking in a language that, despite their best intentions, was alien to us. We went to our room, lay on the bed and closed our eyes, falling into an exhausted sleep.

The phone rang, piercing the silence. We knew what it meant "It's Roxanne, from the unit. You'd better come down." I can't remember getting to the unit, but I can remember entering the room and from that moment it was as if time stood still, it was as if I was watching my life played out as a movie in front of my eyes. I heard the doctor say the words "There's nothing more we can do. If she crashes there's nothing we can do to save her." I remember watching my husband plead and beg with her to try something, anything. She replied that the only drug they can administer in these situations is adrenalin, something that was already being pumped into her tiny body.

I knew.

In reality I had known earlier that day when I noticed that her tiny, perfect foot had started to turn black. I knew that her body was shutting down.

The hospital asked if we wanted to call someone to be with us. I said no. I didn't want to call any of our family, to have them race up to the hospital and potentially be too late. I wanted it to just be us and our girl. They pulled a partition around us and asked us if we would like to hold her. My husband said I should hold her and we asked for assurances that she wouldn't be distressed by coming out of her incubator. They assured us that she wouldn’t and after a bit of equipment rearranging, I finally got to hold my tiny, fragile girl. She was like a tiny little bird. I held her in my arms and told her how much I loved her, that she was safe and that Mummy had her. The nurse ventilated her manually and just a few, oh so brief minutes later, looked at me and nodded sadly. That was it, she was gone. A lifetime full of hopes, dreams, wishes, gone. Just. Like. That. Like blowing out a candle. I'm not at all religious, but whatever makes you you, your soul, life force, whatever you would like to call it, left her body. Just. Like. That. I was left holding her tiny, perfect body, but that was it, it was a tiny, perfect shell, she had gone.

I passed her tiny body to B, who asked the nurses to remove all her equipment so that we could see her face for the first time. I looked at my husband holding our tiny girl's body and realised for the first time that it is actually possible to see someone's heart break right in front of your eyes and I remember thinking, how am I ever going to fix his broken heart. (Something I still don't have the answer to this day.)

 

Three years on

It is coming up to three years since we lost our baby girl and her twin sister is now a feisty, full-of-beans, fearless three-year-old.

People often ask me how we did it, how we carried on with life. But there wasn't a choice, we had three daughters who needed us. Our surviving twin was fighting her own battle in the neonatal unit and our older girls needed us more than ever. As hard as it is, life carries on. School sports days and art weeks and playgroups carry on. Looking back on that time, it was as if I had three different hats, three different personas. I would get up at home, be "Regular Mum" to my big two, get them ready for school or the childminder or a family member, then I would go the hospital and become 'Neonatal Mum' where I spent my days sitting in the baking heat of the NICU unit, waiting for doctors to come around, learning the NICU jargon and what the various beeps on her monitors meant, interspersed with regular trips to the 'milk room' to express milk that hopefully one day she would be able to tolerate. Much of my milk was frozen, which involved carefully labelling bottles with dates, times and the name of the baby the milk was for. Months later, when we defrosted some bottles, there on the label would be the stark reminder that this milk was made for two; labelled with both girls' names. And then at night, when the world was asleep, when I could take off my "Regular Mum" and "Neonatal Mum" hats, I could be "Grieving Mum" and think about my littlest girl, all the moments that we would never have.

So almost three years on, what have I learned? That grief is individual, that it doesn't "get better with time" that it can hit you at any time, any place. But that life does go on. There are times over the last few years that I have looked at my little family and could burst with pride. There's times I have looked at us and thought "We're ok, we're all going to be ok." But there's also been days when I've said goodbye to my husband and honestly wondered if he will ever come back home because he just looks so sad.

I've learned that people grieve in different ways. A large proportion of couples who lose a child end up separating and I can see why. I like to talk about Primrose, for me it keeps her memory alive. For me, as a mother, my worst fear is that she'll be forgotten. I like to talk about her, have photos of her. My husband does not. I can count on one hand the number of times he has mentioned her name in the three years since she died. It took me a few weeks to notice that he would deliberately sit at the end of the table where his back was to her picture on the wall, so he didn't have to look at her. After a year and a half, he asked me if I would take her photo down. Initially I went mad, I screamed, I cried, I shouted at him that he couldn't remove her just like that, that he couldn't pretend that she hadn't existed. It could have broken us, it almost did. Then we finally talked, finally broached the elephant in the room. He asked me again to move her picture, he said he found it hard to have a constant reminder of what had happened. He didn't need a picture to remember her, he remembered her every day and he just found it too hard to see her face every day. So, then I realised, he was the one person in the world who felt as I did, she was his daughter too. I know how gut-wrenchingly awful it feels to wake up every day and remember that your baby is dead, why on earth was I making it harder for him. If I could do anything to make it just that bit more bearable for him, why wasn't I doing it? It seemed like a big milestone, like a big act, but in reality it wasn't. It was a picture, she is always right here, in our hearts. I've put her picture in her sister's room, in what would have been her room, which feels the right place for it to be.

I've learnt that grief can hit at anytime, anywhere. Some days I'll be bathing the girls and for some reason they'll all be up one end of the bath and I'll think, that space, that's where she should be. Often I sit with the three girls on the sofa and I'm looking around for someone else, which is stupid, because she never came home, she was never in this house. I feel desperately sorry for her twin sister, don't get me wrong, she's happy and healthy, but she's lost not just her sister, but her other half, they were two halves of one whole. I'll always wonder if she knows, sometimes I catch her looking at me and I wonder. Had things turned out differently, they would have had such fun, such adventures, and it breaks my heart that she'll miss out on that. Life is chaotic with three kids and would have been crazy with four, but I would give anything for that craziness. I know that the questions will come one day and I dread that day, how do I explain to my beautiful girl that she survived and her twin did not.

Sometimes I'll see twins when we are out and about and I can look happily and not give it a thought. Other days my heart will literally catch in my throat and I could burst in to tears right there. I'll see a set of twins, the age my girls should be and think, that should be me, why didn't WE get to keep both of our girls?

I've learned that when you lose a twin, you are a bit of anomaly, no-one knows what group to put you in, or how to treat you, you've been through the best and worst experience of life at the same time, you are celebrating a new life at the same time as losing a life. No-one knows what to say or do for the best. Should they congratulate you or give you sympathy? In my experience, do both. The best thing we received was from a playgroup my husband has attended for years with all of our girls; in the same envelope we had a congratulations card for the girls' births and a sympathy card for the loss of Primrose. When someone has lost a baby, whether it is before birth or days after the birth, they still had that baby, they are still a mother. To this day, the question I dread the most is "How many children do you have?" What do I say? If I say "Three" then I'm denying that I had her and that she ever existed. If I say "Four" the next question is generally about their ages, then what do I say? If I say "I had four but now have three" I will end up telling them our whole story, they will feel like the worst person in the world and more often than not they'll never speak to me again! For over two years now I've been a member of several twin groups, I feel like I don't belong there, but I can't bring myself to leave. I can't share in the toils and turmoil of twin parenting, because I never had the chance to experience it, yet whenever I meet parents of twins, I feel drawn towards them, as if I want to shout out "I'm a twin mum too" at least I was for five short days.

I've also learned that our society treats people differently, treats men and women differently when they grieve. The week after Primrose died we were inundated with messages, cards, offers of help and well-wishes from my work colleagues. I worked as a teacher in a very female-dominated environment, who all rallied around to help; within days a food rota had been set up so that every few days, there would be a knock at the door and one of my colleagues would be there with a Tupperware full of bolognese or casserole. My husband went back to work the week after our daughter died and actually had to stop his team part way through his first shift to check if they knew what had happened as not one person had said anything. He works in a very male-dominated environment, with several younger, childless people, but I still can't believe that not one person said anything, not even a "Sorry mate!"

My mum received cards, phone calls, flowers, outpourings of love and support from her friends. My dad on the other hand, received nothing. Some of his friends, who've known me since I was a child, said nothing to him about what had happened, not a word. I don't think he will ever forget that.

I can understand why people say nothing, death in our culture is a taboo and the death of a child is the ultimate taboo. I hope by sharing our story, I can help break down some of these taboos surrounding child loss and grieving families.

In memory of our baby girl Primrose - you only lived for five days, but will be loved for a lifetime.