Eloise, 23 years on.
Eloise, 23 years on.
My apologies if this is long but trying to work out where to start our story has been hard, as its long and all relevant to how decisions are made. I hope there is something in here to give you hope if you are reading.
We had two beautiful, busy, bouncy boys.
Although getting pregnant in my final year of university with William was a surprise and not ideal, both my now husband and I nailed it! One baby six weeks before our finals: boom! Two degrees in June, tick! We moved on to our wedding in September. 1995 was a good year 😊. When William was fourteen months old, we were lucky enough to find out we were going to have another baby. Gethin joined us in March 1997, twenty-three months after William. The boys were a lot of fun and hard work, but I’d be lying if I said I didn’t have my struggles with energy and confidence at times with the two of them, while Geoff continued studying. However, I knew I wanted a family of three or four children. It was somewhere in these two years that I heard a statistic that shocked me, and I still remember it clearly: one in four pregnancies fails. I remember thinking: ‘surely not, that is so high!’ I have learnt since then that statistics mean very little when you are the one. We were twenty-five by the time Gethin joined us and I had only had experience of successful pregnancies.
Gethin was two and William almost four when I found I was pregnant again. I couldn’t have been happier our little family was growing; Geoff had started his first job and we were thinking of moving from Cardiff to the Bristol area, closer to my mum and for Geoff’s job. It would be a place to bring our family up. Cardiff was only ever supposed to be a university destination.
We started the moving process while I registered my pregnancy and went to the normal antenatal appointments and check-ups. Both of us had decided when we were expecting William that we didn’t want the blood tests that might show up Downs Syndrome or the scan to tell us the gender of our baby. This knowledge was for later. The challenge and excitement of having another baby was for now. We had decided we wouldn’t want to terminate the pregnancy if Downs Syndrome was detected, therefore there was no point in knowing until baby was here.
To me, a scan was to say hello and see a heartbeat, to absorb the reality of our new person. I’m sure we were told about it being to detect abnormalities but, in my naivety, it was to say hello.
Everything was normal. I attended my appointments on my own with two small people in tow - I knew the ropes. At my twelve-week scan my dates were put back by two weeks. My twenty-week scan was a bit more of an event: it was time to really say ‘hello’. My mum came with me this time to help watch the boys and experience a scan, as these were not around when she carried me and my siblings. It was an exciting and happy time. This was still in familiar Cardiff. For the first time it didn’t quite go as expected. Baby had a two-vessel cord when there should be three, and a Choroid plexus cyst on the brain. I was told that although these were markers for abnormalities, healthy babies can have both present. But there might also be implications of kidney problems. There were no other markers seen, so my rational was: ‘OK, so baby might need help. Worst case kidney failure and transplant.’ It was difficult and upsetting to process, but we talked, and the reality of this became part of the pregnancy. At twenty-four and a half weeks our house move happened. We moved to a very broken house, which needed a lot of work. It was an hour away from Cardiff and still two hours from my mum. It was in a small village with none of my established support - all very new for all of us.
I did need some persuading being pregnant with potentially a poorly baby and two small boys to take on the project, but we wanted to find a place to bring up the children and this was what we could afford and where Geoff’s relocation package could help us. Had we known what was around the corner, maybe we would have chosen a different plan.
When I left Cardiff, the anti-natal services contacted South Mead hospital to let them know of baby’s situation and that I needed checking in as soon as possible. My scan was at twenty-five and a half weeks. I went on my own again: I’d been to so many, it was nothing new, and I knew the problems with baby. This was just booking in.
How wrong I was! Answering the normal questions and being taken into the scan was all very straight forward. (Looking back, I don’t think our decision not to have Down Syndrome blood tests was made obvious to the new team. Maybe they wouldn’t have shared the findings and we wouldn’t have had to go through the trauma of making the decision. We could have just had the one unbearable trauma when she was born.)
After a few minutes I was asked to relax and wait while another radiographer was called in. I was then asked if I wanted to call anyone to be with me as they needed me to go to another more powerful scanner to check a few things. Thankfully Geoff’s work wasn’t far away and he came to join me. I felt sad, scared, and vulnerable. I thought we had come to terms with the worst outcome of kidney problems, but this seemed like something else was wrong.
This next part is a bit of a blur, twenty three years on. But I do remember the conversation telling us they could see extra markers of, overlapping fingers, rocker bottom feet and a strawberry shaped head, and that all this was indicating trisomy 18. Something and that is ‘incompatible with life’. So blunt - there was nowhere to go in terms of making the best of it. ‘Incompatible with life!’. I think this was when we were given the 50% cascade of outcomes, 50% of trisomy embryos don’t make it to twelve weeks, another 50% don’t make it to term, another 50% don’t make it through labour and so on with markers of an hour, a day, a week, a month. The consultant was very frank. I now appreciate they have to be, although at the time I felt battered and craved a softer conversation.
The option of a blood test and CVS were given and of course we could ask any questions. We opted for the CVS as it would be definitive. I thought we had made this decision when I was pregnant with William: ‘we would deal with problems when baby arrives’. We didn’t want to be put in the position of having the information to choose a termination due to abnormalities. But here we were.
A couple of days later we were going on our family camping holiday to France. We were given a date to expect the results, and I can still remember exactly where we were when we got the call: the town carpark in Quiberon Britany: beautiful. We left the boys with my mum and drove to the end of the peninsular to call back to discuss the results. Full trisomy 18. Although we had been told this was very likely I think I still had a little hope that a mistake had been made.
Over the coming days we tried to enjoy the holiday, trying to come to terms with what this meant, going over the 50% cascade in my mind. All the time trying to be present for the boys and Geoff. I remember feeling sad that if I had a glass of wine or some blue cheese (things I’d been avoiding) I would not be causing harm, as my baby was already in a very bad situation.
On our return, I discovered SOFT UK and we informed ourselves as much as we could. Eventually, we made the decision that although I might miscarry at any moment, or baby might not make it through delivery, we would keep going and deal with this as it came. We didn’t want to intervene.
I was quite big now at twenty-nine weeks, when William started his first day at school and Gethin started playgroup in our new village. I knew nobody. This should have been such an exciting new adventure bringing our little family into a new community, new friends, first day of school etc. But it was hard.
In the school playground there were a couple of similarly sized pregnant mums, and of course we all got the same questions, how many weeks are you; everything OK? My tummy was an ice breaker for them to welcome the new person to the village. I couldn’t and didn’t want to introduce myself with: ‘actually I’m twenty nine weeks and my baby is incompatible with life’. That wasn’t going to help me make new friends. So, I played the role of all is well and exciting in the playground and at pick-ups and drop offs. At play group, I was confronted with a very new baby, and the nature of playgroup demographics are that there a lot of small people and pregnant mums. It was a challenge to hold myself together and keep my resolve. I wanted to give baby as much as I could, and all that seemed to be possible was the time I could keep her safe and warm by carrying her.
Eventually the headmaster of Will’s school told me that one of these mums had lost a baby two years before, so she might be a source of companionship. We are still friends today. Knowing Ann with her little boy, in William’s class, gave me a window to better times and a knowledge that time will keep going. Although it felt overwhelmingly like I couldn’t see how I would get through this.
Then to playgroup, other pregnant mums, and very new babies. I did find this experience very tough. I also found being present for my boys hard until I had made the decision to just keep going and see what nature wanted to do. I had a few weeks of feeling settled, but moving forward with a plan, I could enjoy these firsts for the boys.
Thirty-three weeks, and I had a standard antenatal appointment at my new GP. On my own again, thinking nothing more can go wrong. Well, my blood pressure was very high, and they wanted me to transfer to the hospital. I had to get help with the boys and Geoff out of work again, so off I went. I began to worry about high blood pressure in pregnancy and pre-eclampsia, and the impact of a poorly me, accompanied by the outcome for baby, and the impact this would have on our boys. My head was in a bit of a spin. I sat in the maternity ward being monitored for a few hours, and eventually my blood pressure came down and a very blasé midwife said: ‘there you go, everything is alright, you can go home now.’ I was distraught, as if my magic cloak that was keeping me going on this path of accepting what will be will be, was pulled off me. I crumpled. I needed a way out of this situation for our boys, Geoff, and me.
Baby was always going to have an awful outcome and experience of birth. But I could decide to remove the waiting for what was going to happen. So, I asked if I could be induced to deal with what was inevitable. There would be no more worry over my health. The boys needed me, and I needed to deal with what was I had been told inevitable. I didn’t want a termination, I wanted to go into labour. I couldn’t bear the waiting for what was definitely not going to ‘be alright’
It sounds so lame, now I say this, but at the time I was overwhelmed with grief that I knew wasn’t good for my family. So, I was booked in to be induced at thirty-three weeks. I have carried a lot of guilt for this decision and probably still do, if I let myself dwell on it. But my mother-in-law said very clearly to me at the time, ‘remember this is the right decision for now.’ When I doubt it, this has always been my key to move past it.
I went home overnight and came back in the morning. I was pregnant needing to be induced so I was in a waiting area with other pregnant women being induced. Of course, I didn’t know for sure, but they were all looking forward to meeting their healthy babies. Another tough experience with some uncomfortable conversations. The only control I had was deciding who I would tell or not about why I was there. I assumed as I was already enormous, with the extra trisomy fluid that labour wouldn’t take long. Will had taken eight hours and Gethin more like four. Again, I was wrong! I was admitted on the morning of the eighth of October and Eloise joined us at 6:30pm on the ninth. It was a long, tiring time.
We didn’t want to worry the boys or exclude them from what was happening, so we planned that they would come to visit when the time came. My mum and my sister, as well as Geoff kept me company in rotation. It was the hardest of my four deliveries because Eloise was so tiny. Once my labour started it wasn’t very strong, so I got very tired without dilating much. I assume because it was induced rather than it being a natural labour. We had clothes for Eloise ready to dress her. We didn’t know how long she would be with us, but we hoped a little while to say hello, and show her that we loved her.
That night while I waited for my labour to start, we chose her name: Eloise.
My labour was weak in the evening of the eighth. Geoff was allowed to stay with me overnight which was lovely, in a special sympathy room in the maternity ward. We helped name the room in honour of Eloise. We call it the ‘Maple room’ with reference to the beautiful Autumn colours that where all around at the time.
I had been in labour for hours when the paediatrician asked if they could scan me to see how baby was. She was there and moving so I felt hope that we would get to meet her. They kindly gave me the scan pictures which I treasure. She then announced that they would be preparing to inject baby’s heart to stop it. I was horrified and very upset. That wasn’t why I was here! I wanted my labour to be induced. I didn’t want to stop my baby’s heart! I told them to go away. The paediatrician then proceeded to inform my husband, in a very unkind tone, that although he had taken the decision to terminate they would be duty bound to do all they could to keep baby alive. This felt very insensitive and not reflective of our intentions. He still says how hard this was to hear.
Eloise died during delivery or very soon after. I was exhausted when she arrived and cuddled her and talked to her hoping she could hear. I felt she was with me for a little while.
Over the years when people have asked me, or I have spoken about Eloise, I have questioned myself as to whether I am worthy of the sympathy of a still birth as I asked to be induced. Logically I will go back to my key from my mother-in-law. Sometimes I’m comfortable describing what happened as a still birth, other times simply trisomy 18 or Edwards syndrome. Sometimes I simply say I lost a daughter. What we experienced was horrible, and how we navigated it was the best we could. We made it, so now all these years later I know that however I feel about how much I want to share or not, is OK. Sympathy, empathy worthy or not, none of that matters. It’s important to be kind to oneself about what feels right at every moment. There is no rule book or accolade to obtain. Surviving and finding joy in living are the only goals that matter.
I have one big regret: we didn’t want Eloise to have a post mortem. At the time it seemed unnecessary as we knew why she had died. Her tiny body had looked very bruised from the birth, so we didn’t want her to go through that as well. But in hindsight, a post-mortem would have given her the opportunity to inform others for future.
I have one big sadness: I asked for her to be taken from us a few hours after the birth because I was so, so tired after the emotional roller coaster and delivery. I could barely function I was so tired and upset. But I couldn’t sleep with her near me. It didn’t seem OK because I should be focused on this little time, I had with her. I wish I had bathed her little body and had the strength to dress her and love her a little more with Geoff. But I truly was exhausted in every way. So I made an appointment the next morning to visit the chapel of rest as soon as possible.
I was determined to read a poem at Eloise’s funeral. We had about thirty members of the family and a few friends travelled from Cardiff. It was one of those ‘I must, I want to do what I can for Eloise while I can’. But I couldn’t, I crumpled. That’s what the poem is which I’ve included at the end.
We opted for a cremation; I couldn’t face leaving her in the ground. Her little ashes box will come with me when I go, which has been a comfort over the years. Eloise was with us for such a short time, but we had: the footprint and wrist band from the hospital; lots of cards; tiny teddies; flower cards; scan pictures; pictures from the delivery room, the chapel of rest and her coffin in our front room so we had items to keep. I needed a box and found the most perfect oval shaker box a couple of weeks after the funeral. I’ve not seen one again to buy so it was meant to be her box. I am so pleased I bought this and kept every small thing I could as it became invaluable a few years later when I needed to revisit these items to retell the story to Gethin.
A funny not so funny moment to share - we brought Eloise home from the chapel of rest ourselves, just me and Geoff. We needed petrol, so she came with us. It felt nice to do a normal thing with her. When we got home we placed her little coffin and flowers in our front room to sit a while before heading to the church. The phone rang right next to the coffin. I answered, and it was the health visitor just calling to see how baby and I were! I was a bit stumped given that I was next to her little white coffin preparing to leave for church. I had to tell her; it was one of those black humour moments. I’m sure it’s one she remembers and retells to new health visitors: ‘make sure you read the notes!’ I felt awful for her, but grateful I had something to chuckle about. How very wrong you can get things!
Anne was one of the mums in the playground who was pregnant along with me. Eloise was born early October and her baby was due in January. Anne had lost her second son at seven weeks old, two years before. She understood our loss, and also showed me that another baby was possible. One of the most valuable, healing things that happened to me in the early months was when Anne’s baby girl was a new-born, she let me hold her and look at her. I remember being struck by her beautiful her opening eyes were. I cried a lot holding her that day, and have been very grateful that Anne didn’t avoid me holding or being part of Megan’s early life. I think it’s quite normal for people to cross the road to avoid situations that might upset you. In fact, Megan and our Abi are still very close today. Not avoiding situations gave me a chance to feel, and to not hide or bury emotions. I have seen Megan grow and hit the milestones that Eloise would have - going to school, secondary school, proms etc. I’ve always enjoyed watching with happiness and a little sad reflection of my own, but that’s OK because Eloise had a moment with me again.
That moment after the funeral when you know you have got to somehow crack on with life was welcome, but a struggle. I knew I needed to find the joy in life for our boys. I will always carry a mother’s guilt for not being the best mum I could have been. Especially for our funny, gorgeous little Gethin who so needed a mummy while he tried to make sense of the world and what had happened.
He asked some questions that would break our hearts in their simplicity; ‘why can’t daddy get a ladder to climb to Eloise’s star and bring her back here?’. He also woke one night when he was maybe three or four years old, to tell me he was worried about Eloise’s feet being at the end of his bed. He wouldn’t always talk of her, but every now and again he would make a small comment. When he was six, he would have very cross moments, apparently not at school only at home. He also found it hard to hug other family members when we went to grandparents etc.
I knew he wasn’t happy/ content/ settled, but I had no idea what the problem was or how to deal with it. So after a particular moment when he said he wanted to take a knife so he could start again being Gethin, I knew I needed help. I went to the GP and asked if this could possibly be anything to do with us losing Eloise and the trauma that had had on our family.
(Both Will and Gethin came briefly into the delivery room and met Eloise but didn’t come to the funeral. They planted conkers and acorns which have now grown into big trees making their own conkers and acorns).
The GP told me to contact Winston’s Wish charity to see what they have to say.
It was amazing. They instantly agreed this could be the root, and what they advised was genius. Gethin was two and half when we lost Eloise. So, we had explained things and he understood as a two and half year old. But he needed to understand what happened as a six-year-old. So, I sat him down with the box, showed him pictures, explained and answered his questions. It was like a magic wand; he was calm and gave cuddles again. It was so simple, but it made a huge difference to him and us all. He is now a very happy, able twenty-five-year-old man.
Eloise’s box also gave me a safe place to go and remember. A quiet, calm place out of my busy family/ workday if I needed to focus and remember. I promised Eloise I wouldn’t forget her and the box was where I kept the promise. Over the years I have been very able to feel the deep sadness but that became a comfort - that I hadn’t forgotten her. Not in a dwelling, ‘I can’t move on’ way, but a way to connect.
Three and a half months after losing Eloise I became pregnant again. Even though all the professionals suggested not to for at least a year. For me, being pregnant was the way for me to bear losing Eloise. It did feel like the longest pregnancy in history, but Abigail is now a healthy twenty-two-year-old. I think she would say she has always known about Eloise, and sometimes missed the sister she didn’t have, especially when her big brothers would tease her. For the first twelve weeks of this pregnancy, we were expecting twins - my six-week reassurance scan showed the two babies, but by my twelve-week scan there was only one. That was six weeks of expectation, excitement and fear of instantly jumping to four children, which was my goal. My husband meanwhile was stressing about what car we would need! It was a sadness to lose one but much easier to adjust to.
When Abi was about one and a half, I fell pregnant again. I was so pleased to have another chance to fulfil my dream of four children. But sadly, I lost that baby at thirteen weeks. This miscarriage made me reflect on things. I had three beautiful children and I had lost three in quite different ways. It was time to stop chasing a dream and enjoy every moment with our three children. The future was for living. I do remember feeling a weight was lifted. Whether the other two I lost had trisomy of any kind I will never know. But that’s ok. The statistic I heard about one in four pregnancies failing came back to me and my statistics were somewhat poorer than that. But I was one of the lucky ones to have three healthy children.
Quite often a question that presents itself when a tragedy happens is ‘why me?’. My answer to myself when Eloise was born was ‘why not me?’. I’m not special and actually, I wouldn’t want anyone else to feel this pain. This has helped me through tough moments.
We have had a lot of joy and happiness since losing Eloise, and I think we have appreciated and valued our family and time together possibly more because we have experienced a very deep sadness in the family. All three of our children were always aware of Eloise and celebrated her birthday together with a cake until her eighteenth. I knew as they got older that marking her birthday was much more for me, and that was ok. Now, Eloise’s birthday is a moment for me to reflect and appreciate the life we have - happiness, joy, heartbreak, and sadness are all part of this wonderful life.
I asked William recently what he remembers about losing Eloise and how we have navigated it for him as a family. Being 27, he said ‘not very much really’. The only experience he remembers is feeling bad as a teenager for not feeling bad- not feeling the emotions that maybe he should have or that he has for other people he knows have experienced something similar.
This was the first time I had directly asked a question about Eloise since he was small. Our only reference really was made with the birthday cake. I’m sorry he felt bad and didn’t say to me but I’m really very pleased he didn’t keep the sadness. Maybe acknowledging and marking on just one day made Eloise a normal, accepted part of our family story. I couldn’t actually have hoped for more.
I am writing this twenty-three years after we made hard decisions and lost our little girl. Not because I have spent that long grieving, but to hopefully offer hope that life and everything that is good about its rich tapestry is still there to be yours, whatever stage of your journey you are at. My box gives me access to some of those very deep sadness’s if I choose to revisit it. It does surprise and comfort me when it catches me, but I can honestly say I may well have let three to four years pass at times without touching the pain of this loss. Only reflecting on her birthday.
Reflecting twenty-three years later, I don’t regret our decision. I wish I hadn’t been put in the position to make the decision while pregnant, but once you know something you can’t unknow it and a plan needs navigating. We had a very sad trauma in our family to carry, but we (and I include our children) didn’t have the everyday appointments, worry and turmoil to our every day. Our children had very ‘normal’ (not sure that’s the right word) childhoods and I’m thankful for that. But more importantly Eloise didn’t suffer in her poorly little body.
The poem I wrote before Eloise’s funeral:
I hoped you would open your eyes to see me,
And your ears to hear me,
And your body to feel me,
I wanted your heart to know we loved and wanted you
I long to hold you, to cherish you
I long to kiss you, to comfort you
I long to watch you grow
To blossom
But I can’t
I can only say goodbye
Cherish the time I carried you
I can only promise a place in my broken heart, forever
I can only let time heal my pain and wait for your memory to be comfortable
But I will never forget.
Fly free my sweet Eloise