Remembering Casey, by Jade Ellerby

I went from being the happiest I had ever felt, to the lowest I had ever felt overnight. I was newly married and on a strong upward career trajectory. My husband and I had just bought our first home and were eight months pregnant with our first child. I remember looking at a picture of my husband and I on our wedding day and thinking how lucky I was; even if we hadn’t been able to get pregnant so quickly after deciding we were ready to have a baby, we were already so blessed. I’d been practicing hypnobirthing and spent 15 minutes every morning reciting positive affirmations to my expanding tummy (“you are that wonderful baby”).

Every kick or movement from baby brought a smile. I was a busy, active pregnant mum; still going to my weekly Pilates session, still working hard (and planning to continue as long as possible before baby came), still meeting family and friends and always with a big smile on my face; never feeling weighed down by the pregnancy, only more alive. I was confident and capable; I was going to handle having a baby in my stride, like I did everything else. I made my family spend time talking to us so baby would recognise their voices and feel comfortable with them. I’m a natural worrier and occasionally I would fret that baby wasn’t moving. We sat down often in the evenings and played music to baby and I would cry with relief at feeling those kicks and wriggles again, looking forward to the time I’d get to cuddle baby in my arms.

On 8 June, 2016 I woke up feeling “not right”. Heavily pregnant, virtually at full term, I was used to baby’s movements and pregnancy indigestion meaning I didn’t sleep so well at night. This time it was different and it somehow felt like I hadn’t slept all night because I’d been worried. I called the hospital as I ate my breakfast, and said I felt baby hadn’t been moving much and hadn’t moved that morning. They said to come straight in and they’d check me out. I drove to the hospital feeling increasingly worried as baby still didn’t move. I had a headache. My work phone battery had died so I hastily typed an email on my personal phone to the person on my team with the easiest name to spell saying I had a headache and wouldn’t be in today.

I went to the Maternity Day Unit – I’d been once before, at night, when the movements were reduced at around 24 weeks; I’d been made to feel a bit silly for coming so early in the pregnancy. I waited a little while and was taken through. A midwife with a very red face used an “old school” tool I’d never seen before to listen for baby’s heartbeat. I saw her moving it around my belly and looking increasingly nervous. At this point I knew in my gut that my beautiful dream was over. I think the midwife asked for help and I was moved to one of the two rooms where there were bedside scanners, where a young-looking doctor scanned my tummy and said “I’m so sorry” as a couple of midwives seem to flap around me.

I remember feeling disassociated from my body and saying in a robotic voice “you’d better call my husband. My signal doesn’t work in here. He has a new phone number, I’m sure I can remember it. It’s 0…7…” and proceeded to recite my husband’s new phone number from memory. They left a message asking him to come to the hospital as soon as possible.

I sat up and a midwife hugged me to her chest and I cried. Another senior sonographer came and performed a more thorough scan to check for clues as to what had happened. I looked at the ceiling, feeling both disbelief and the absolute inevitability of what had happened at the same time. The scanner kept pressing hard by my upper right abdomen, and I asked him why it hurt; he said it was the baby’s head. The baby was breech – and I remember feeling the baby turn, but still can’t place whether that was the night before, or two nights before.

Once this was finished, I said I wanted to go outside and wait for my husband; I didn’t want to be in there anymore. They were reluctant to let me outside in case I drove off but I insisted, promising I wouldn’t drive off. I went outside and stood in a daze; after 10 minutes I decided to drive to the tube station where my husband would be headed. I needed to be with him. It seemed to take forever for him to arrive and when he did, I told him the baby had gone and we cried together. My husband is generally an “emotion sceptic”; I’ve never seen him cry like that before or since. I came out with a load of cliches about it “not being our time”. We went back to the hospital and the doctors were kind enough to humour us with a third scan to prove again that the baby’s heart hadn’t magically restarted, before taking many vials of blood for various tests and giving us a mountain of leaflets to read. We met the bereavement midwife, Julie, and couldn’t believe that this was something that happened so often that people could have jobs specifically related to it. How little we knew!

The next few days were horrendous and mostly spent in a daze and on autopilot. Telling people was painful; we drove the hour to see my mum face to face and met her as she was leaving work. She told the rest of my family. Phil braved phone calls to his family in York. My auntie bravely packed up parcels and parcels of baby goods that I’d ordered and had delivered to the house she shared with my grandparents, in a final online shop a couple of days prior, to have everything ready for baby. The sun kept shining down which felt completely perverse. We wrote long emails to work about who could take care of what in our absence.

The birthing process began that Wednesday with a tablet to get things ready, before being sent home to return on Friday for the induction proper. After initially wondering how on earth I could use all the positive visualisations associated with hypnobirthing to have this baby naturally, and why on earth they wouldn’t just cut baby out, Phil and I sat in the park on Thursday in the sunshine and made a plan, with our baby, no longer kicking and moving, still in my tummy. We would bring baby into the world as we had intended. We would use the techniques we had learned and get through this together.

My mum and sister came on Thursday night, broken with grief. Phil’s mum, dad and sister came to the hospital on Friday. We met in the coffee shop while waiting for something to happen. It took all night, and various midwives came to check on me, some just ticking a box and some ready to listen. Eventually doctors started talking about moving me to theatre “just in case”. One midwife who told me she was from Prague (where Phil and I had got engaged) listened to me and asked what I wanted. She told me to advocate for myself if I didn’t want a C section. As my waters broke and the contractions really began, my midwife Rosie started her 6am shift on Saturday 11 June. She helped support me and Phil through the process, leaning into our hypnobirthing work. It was getting too much though, and I was tired. I couldn’t eat “just in case” I had to go to theatre. I could feel myself fighting the process and none of the pain relief they gave helped. I had to ask several times for an epidural, eventually finding the lucidity to explain that I’d kept very calm so far, and if I ended up having a C section because they’d taken too long to give me an epidural, I was really going to lose it. They got me the epidural; I had to be really still while it went in and finally managed to channel the hypnobirthing again – asking if the epidural was working already as I breathed through a contraction: it wasn’t even in yet! Once numbed, I was able to sleep for an hour while Phil took a shower and got a coffee. He came back just in time; baby announced themselves before anyone was really ready! Rosie had gone to grab lunch, assuming nothing would happen for a while. Phil and I smiled with relief, and midwife Kate took care of us while the doctor Katie came in and delivered Casey, made slightly more complex by the fact she was breech.

Katie asked if we knew the gender and we said no. She asked for confirmation and told us she was a girl, and that she was beautiful. I cried; whilst I didn’t care what gender the baby was, it made the loss feel more real.

Over the next 24 hours our family came and met our little girl. We called her Casey Hope, which just felt right. We sat with her and were able to see that she really was beautiful, in spite of her water damaged body that had taken almost four days to leave me. We played songs and read her stories. I will forever regret not holding her. The midwives washed and dressed her; we didn’t know what to do. It was our first baby; we’d never held a newborn before. The hand and foot prints that Rosie took for us are much treasured.

We waited six weeks for her to have an autopsy, it didn’t reveal anything other than the placenta failed, and they didn’t know why. Then we were able to finally hold her funeral, which was beautiful. Immediate family watched as Phil carried her tiny white coffin in to the sound of Judy Garland’s version of “Somewhere over the Rainbow”. For the first time, my family saw my ever-stoic Grandad cry. I read Emily Dickinson’s “Hope is the thing with feathers in its chest”. Phil read a poem about a butterfly. We played “Be my baby” by the Ronettes, which I had sung relentlessly to my growing bump. A lovely funeral celebrant called Gail became choked up as she read our story of Casey. We left to a beautiful version of “Somewhere over the rainbow” by Israel Kamakawiwo’ole, with everyone scattering pink, yellow and orange rose petals from their garden over her coffin, which we’d covered in a blanket, and into which my sister had tucked a card with a shining sun. This beautiful, colourful, vibrant picture brings me comfort.

Over the next few months sleep was fractured and light, just as it is with a newborn brought home. Endless questions tortured me; why hadn’t I noticed? What could have been different? Why wasn’t I told how important it was to tune into baby’s movements, despite having read my maternity notes and guidance cover to cover and following every piece of advice given? What if those midwives had treated me differently at 24 weeks? We came to know that 1 in 200 pregnancies ends like this; with the baby being lost after 6 months, and we would have a slightly higher chance of recurrence but would be closely monitored.

I took eight months off work and threw myself into recovery. I went to a quiet Mayfair gym five days a week to keep busy and lose the weight as fast as possible, to feel physically healthy enough to try again. I often cried behind big sunglasses on the train in. I had to tell gym instructors that I’d had a baby 2 weeks ago so they could tell me whether to adapt or avoid exercises, and hold my back tears when I corrected their congratulations.

One of the hardest things was managing other people’s reactions to the literally unspeakable thing that had happened. I slowly met with the friends who were brave enough to face me; several were incredible, listening to our birth story, saying Casey’s name, sending cards and gifts with her name on in the weeks and months afterwards. Friends who had lost siblings or parents too soon were especially helpful, helping me to navigate the painful path through grief. Some friends couldn’t face me, and when I eventually returned to work, many people I knew well gave me a wide berth, not knowing what to say, despite me finding the courage to send an email facing the issue head on and encouraging people to talk to me about my maternity leave and my daughter. The loss is also too painful for some of our family to talk about, which is a heavy weight to bear.

My husband and I went to Sands support groups, and attended grief counselling sessions, which were as painful as they were valuable.

As soon as we’d waited the six months advised by the doctor, we fell pregnant again quickly. We hadn’t had time to process the grief, and whilst we couldn’t replace or repair Casey with another baby, it felt imperative to me that we have another baby as soon as possible. Undergoing the voluntary torture of future pregnancies felt like an even bigger mountain to climb, and I had to shut myself off to get through much of it. I suffered from insomnia, and later in the pregnancy found it terrifying to go to sleep as I couldn’t monitor whether the baby was moving – the fear was akin to horror film villain Freddy Kruger coming to get me. I would have clear “flashbacks” of when we found out about Casey, at random times.

We were monitored more closely with extra scans and given aspirin to reduce the risk of recurrence. I also visited a specialist clinic in Manchester for people who had a history of stillbirth, and had extra scans. I logged every single movement the baby made in a spreadsheet, noting down tallies during meetings at work, sitting down for 20 minutes two or three times a day to really focus on baby. I spent hours trying to make sense of the numbers; on a busy day the baby would seem to move less. If in any doubt, I visited the Maternity Day unit (often). Very occasionally I had to sit in the same chair as when we found out about Casey, or a midwife would use the same tool to find the heartbeat. I was too frozen with fear to speak and tell them how scared I was, staying silent and rigid instead. I couldn’t let myself believe there was going to be a baby at the end of this journey and struggled to talk to people about the pregnancy, telling people who knew about Casey not to congratulate me, and dodging questions about whether this was my first from those who didn’t know. It was a complete contrast to our first pregnancy.

I found a collection of mums in a Sands group for those with or planning babies after loss, and this was a huge support. It gave me hope, and was a place to share the true brutality of my sadness and fear. Our family has made some very close bonds with other families who truly understand what we’ve been through.

Eventually, our son Jackson Corey was born at 35 weeks, after movements slowed down and I was admitted to hospital. My spreadsheet was my objective record of movements and this was the only sign of problems; the scans showed things were OK. Nobody wanted to take the risk and I had an “emergency” C section a month early. We were over the moon to have Jackson safely in our arms, and absolutely in love at first sight, through tears of relief.

I hadn’t been able to deal with the full depths of the grief of losing Casey, and now I had to keep it together to look after a real live new born baby. Grief turned into anxiety; I was now familiar with more stories about Sudden Infant Death too. I used to watch the baby sleep, terrified, expecting the breathing sensor alarm to go off, fully believing I was going to find him dead in his cot. I no longer qualified for NHS bereavement counselling. I agonised every week over baby’s weight, and eventually a kind but firm experienced health visitor told me very clearly; “this baby is fine, you are not; you need to get some help dealing with your grief and anxiety”. I went to my GP and used my work health insurance to see a counsellor recommended by our previous NHS bereavement counsellor, which helped me to slowly unpick the grief and anxiety, and live with the questions that haunted me.

Not long after Jackson turned 1, we went on to get pregnant again – and again, it was torture; with every day and every decision feeling like life or death, compounded by some of the scans flagging minor concerns. It didn’t feel quite so bleak though; in some dark way I recognised that I might as well enjoy the pregnancy a little, because if the same thing happened again, this might be the only time I have with baby. I was better able to advocate for myself and got the right medical support in place early on this time. Eventually, Bailey Adam was born at 37 weeks (our longest pregnancy), by planned C section. He moved more and more in the days leading up to his birth, reassuring me every day, and there was no need for a hospital admission or emergency C section. His second name was in honour of our Consultant Obstetrician who was incredible in terms of empathy and support through both pregnancies, and I think even came in on his day off to deliver Bailey!

Having a child is life altering and provoked many feelings related my own childhood. Doing that against a backdrop of intense grief and anxiety was even more challenging. Putting ourselves at risk of bearing that same unbearable sadness and loss felt like complete madness, as well as something we had to do. The loss never leaves you; Casey is a part of our family. Every time someone asks me how many children I have, I’m given a choice between sharing my most vulnerable feelings and making the person asking very uncomfortable, or denying the existence of my daughter. I try to talk about her as often as I can and am slowly getting better at finding the right words. It helps us to be able to say her name, and it helps to feel like we might raise awareness that this happens far more often than it should, and people need to be able to talk about it. The more awareness, the less likely it is to keep happening.

Casey would have just turned 5, and it’s an ongoing journey. I still try to incorporate many of the positive habits I put in place in the weeks and months after we lost her:

  1. Mindfulness helps – listening to a 15-minute guided relaxation podcast every day (when life doesn’t get in the way), from the hypnotist I saw who helped me with the insomnia.
  2. Talking – I still see the counsellor, also talk to my sister and a couple of other close friends who aren’t afraid of grief. And our friends from Sands, who are happy to hear Casey’s name.
  3. Exercise – get out on my bike or to the gym as often as possible.
  4. Self-care – eating well; healthy meals, fruit and veg. Daytime bath when possible. Regular massage / reflexology sessions.
  5. Asking for help when overwhelmed (has been difficult during Covid).
  6. Treating myself very kindly on the 7 June (anniversary of her death) – some time alone, maybe doing something decadent (e.g.; a spa at a very nice hotel). Celebrating her on the 11th (her birthday), including the kids in that; releasing balloons, making cakes.
  7. Keeping her memory alive. Few people want to talk about her this long after, and especially now we have two other children. We miss her terribly and it helps us to talk about her; we have three children. I’m hoping one day to get a pencil portrait drawn of her, from the pictures when she was born. We are so grateful for those who remember her every birthday and Christmas. My mum and sister bought us a framed drawing for her 5th birthday; an outline of our family, with me holding a little angel baby.

We are eternally grateful to those who remember Casey along with us, and are brave enough to say her name. We try to pay forward that kindness whenever we can.

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