“Essie died. Essie had poorly lungs. I want to give Essie a cuddle”
Words that break my heart into a million little pieces every day that Roman or Eva utter them. They miss their sister but view the world through the simple eyes of a three-year-old. Roman and Eva are triplets and their sister, Essie, died when she was 18 months old.
They aren’t called ‘the triplets’ and never will. They are ‘the kids’. The world sees twins, but I have had to take my lead from the kids and answer the ‘are they twins’ daily question with the truth: “No, they are triplets, but we lost their sister at 18 months old”. I say the truth, but I’m still really struggling with uttering the word ‘died’, but will get there eventually, so, for now, it’s ‘lost’.
Back to our story of how we’re parenting through grief and loss, but always with a life that is full of smiles and laughter. There seems to be two camps for fertility – those that can get pregnant just by looking at a penis, and those that cannot. I was a cannot. It turned out that I have severe polycystic ovary syndrome (PCOS) and basically my body doesn’t ovulate.
It took 18 months for me to get pregnant, after having tubes flushed, dildo wands inserted to see what my ovaries were looking like ‘that month’ and my consultant putting me on Clomid, and a load of other drugs to try and ovulate.
Going to our 12-week scan was scary, but when the ultrasound person said ‘you’re big for 12 weeks’ it seemed inevitable we were having twins. But it was triplets. Who the f*&k has triplets?! How would I cope with one boy and two girls? At once! To say the pregnancy was a challenge is an understatement and we had the risk of the girls being mono mono (same sac and same placenta) so then the medical terminology of twin-to-twin transfusion syndrome (TTTS) was mentioned and there was a real risk one of our babies could die before 28 weeks.
28 weeks passed and we were in the clear – so started buying three of everything and filling our house. We even shipped in a triple buggy from Australia as they don’t make them in the UK – who knew?!
On 1 February 2016, the triplets were born by elective caesarean at 1:26pm, 1:28pm and 1:29pm – Roman, Essie and Eva had arrived. They were born at 32 weeks plus 1 day and the reality of having three premature babies going straight to NICU (neonatal intensive care) after a c-section delivery with a million people in the room never quite dawned on me. The babies all came out crying and I remember doing the same as each one was briefly shown to me before being whisked away by doctors and nurses. I lost a lot of blood and spent the day in a room waiting to be moved to the ward. No cuddles, no skin to skin and I saw my babies on photos only.
A doctor came and sat with me about an hour after my husband had left late that evening and said, “your daughter Essie is very poorly”. She’d suffered a significant lung haemorrhage (grade IV, the worst, as we later learnt) and needed to be urgently transferred to St George’s Hospital in Central London. I felt sick, tears wouldn’t stop flowing and an amazing midwife put me in a wheelchair and took me to see Essie so I could say “hello” and “goodbye”.
Essie needed the highest level of neonatal care that could be provided, including being on a ventilator and monitored daily to see if she needed neurosurgery. And at 11 days old, we were told that Essie was going to be a life limited child – as she had suffered a Grade IV (the worst) lung haemorrhage due to TTTS at birth which is very rare. Why hadn’t anyone told us about this being a possibility?! The TTTS had caused a ‘catastrophic brain injury’ – in the words of the neonatal consultant that delivered the bad news to us in a room filled with loads of doctors, sisters and nurses (good news is never given when there are so many people in the room).
Essie wasn’t going to live beyond childhood and would likely have no sight, no hearing, no mobility and no communication. No expectations. Every day we woke up could be her last. I remember crying and holding my husband and saying, “I don’t want to take home a vegetable”. I hate myself for saying those words now, but I was terrified. I cried a lot. I grieved for the child I wouldn’t have.
Roman and Eva thrived in hospital and came home at four weeks old after their feeding and growing journey through NICU and SCBU (special care baby unit), but still were very tiny premature babies that needed so much of our attention, love and care.
Essie got moved to a hospital near to home but I found it so hard. I was constantly battered by a range of emotions from the joy of being a mum, to the utter sadness and despair at what had happened. I was desperately tired all the time, not knowing what to do or how I could keep moving forward, and frightened by the future, which didn’t look anything like the one I had envisaged for our family just a couple of months before.
Having a severely disabled baby, let alone one that was life limited and going to die was not what I signed up for. So I took what felt at the time to be a rational decision - I decided I didn’t want to be Essie’s Mummy. We sat down with Essie’s neonatal consultant and looked him straight in the eyes and asked him to refer us to social services so we could look to get Essie fostered. Essie was scary. She was something we feared.
But then that Mama Bear instinct clicked in. A stupid inconsiderate neonatal nurse snapped me out of my haze by calling Essie “that baby stuck in the corner of special care [baby unit]”. I stood there in shock. No one was going to call my daughter that.
We fought the NHS and finally got them to give us three hours of care a night – initially they weren’t going to give us anything as ‘you expect to care for a newborn baby 24/7’ – and started making plans to take Essie home. On 19 April 2016, after 11 weeks in the hospital, Essie came home on oxygen and only being able to feed milk through a tube down her nose direct into her tummy, as she had an extremely unsafe swallow.
Our life settled into a world where there were medical appointments coming out of our ears, strangers in our house – luckily many of whom became friends - and adjusting to life as parents of three beautiful babies.
Roman and Eva were going from strength to strength. And Essie was being Essie – doing things in her own way and own time, which is why we affectionately nicknamed her The Tortoise. We had to find our new normal and we had to live. Our house was filled with smiles, laughter and life. We were not going to let the ticking timebomb of Essie dictate how we lived. Roman and Eva were always going to be her legacy and their development was our priority.
My husband became my rock and I became his. Our relationship changed because we were facing the worst baptism of fire ever on our journey as first-time parents. We had lows and highs, the rollercoaster was relentless, but we kept talking. One of the nurses at Chestnut Tree House (Essie’s amazing children’s hospice) used to say: ‘off Steve and Lorna go down ‘the Lane’ to come back in firm agreement about what they will do next’. And he was right. We are a team and would often take that walk down the beautiful farmyard lane at Chestnut Tree House, then come back having made a decision about Essie that no parent should even contemplate discussing.
We never disagreed, and we always listened to each other. Even when the decision was an impossible one: putting a DNR (do not resuscitate order) on Essie, deciding to let her die at home, and planning the details of Essie’s funeral and how we both wanted to speak at it.
While our discussions always came from a place of desperation and raw terror about what was to come, we felt that we owed it to Essie to make the right decision for her and to give her the best quality of life we could.
Life as Essie’s Mummy changed me forever. I must have had to call 999 at least 20 times. I’ve been in an ambulance enough for my lifetime, let alone Essie’s, and have arrived in A&E and been taken straight to paediatric resus – where the doctors could resuscitate Essie – and knowing that the numbers on the whiteboard meant that they thought she was bad and not in a good way.
But Essie continued to fight and survived over 10 episodes of pneumonia during her first year of life. And as she fought, I grew stronger. We fought for Essie, as she couldn’t fight for herself. Hearing ‘no’ constantly is relentless and draining, but ‘no’ wasn’t a word in our vocabulary and it just was never an acceptable answer. We always asked for help as there is no support. There is no understanding. There is loneliness and isolation.
In many ways as a parent of multiples, you will be pushed to breaking point and find an inner ‘strength’ you never knew. Then throw into the mix a child that is disabled, and it increases tenfold. I will never identify with the word ‘strong’ though, I’m not strong, I’m a mother and that means I’ll do whatever it takes for my child.
When you’re a parent of a severely disabled child, no one puts their hand up to say ‘guess what, my child is perfectly imperfect’. Disability isn’t recognised in a child under the age of three years old. No matter how ‘bad’ it is and let’s face it, it was very bad with Essie. The benchmark is ‘you shouldn’t get anything’, ‘you will cope’ and many families and parents do. But just imagine what would be possible if babies and children got help early – it’s up to babies like Essie to show us what they can do. The best paediatric doctor in the world will never be able to explain why Essie could endure all she could. But I can. Essie was utterly loved and that’s all she needed.
It’s so hard to not panic when your child doesn’t hit those developmental milestones when everyone else’s child is. But please, relax and enjoy your little ones. Triplets are always going to be premature and that means they will do things in their own time and own way. Even with Roman and Eva being ‘ok’, we were still seen every six months by a neonatal consultant for a development review. There was no point in Essie having a development review, as we were in the hospital so frequently anyway and there was no way she was ever going to meet any milestones. We celebrated the little things that were such a huge success: when she did her first smirk (it was Essie’s version of a smile), when she made a noise with her favourite bell toy that was placed into her hand, when Essie licked your cheeks, when she held her head up for a moment to show off her head control before it came bashing down on your shoulder. In many ways, I can remember all of Essie’s successes more than I can Roman and Eva’s. Hers were special and unique, just like Essie.
Losing friends and being lonely is what makes me the saddest in many ways about being a Mummy to triplets. I was facing a situation that is terrifying, that is lonely, that I didn’t choose and would never ever choose – but friends disappear. Ones you never thought would. Yes, our situation is hard, yes having triplets means you won’t be able to meet up that much anymore. But when all you need is a text or a hug, some friends turn their back or drift away (slowly at first, then more noticeably). Those friends that have stayed with me will be with me forever and I love how much they draw on Essie for their own personal motivation and inspiration.
And then I found a new group of friends through social media. Say what you like, but through Instagram, I found people that showed me what my ‘life after loss’ could look like. I also chatted to those who had their own child with severe disabilities. In many ways, we are the unforgotten, the unloved – but there is an instant bond and ability to say the truth (unfiltered and unedited).
Memories are so precious and please don’t ever take normality for granted. Boring and normal is our idea of heaven. The effort it took to get out of the house with triplets and all Essie’s medical equipment was a struggle. But fresh air is medicinal and helped with clearing my fuzzy head as much as anything. I truly cherish our memories of walking along the beach with our triple buggy and we always return to the same beach now and let the kids collect stones ‘for Essie’. We’ve got quite a collection outside our front door and they make me smile when I come home from work.
On 24 March 2017, after one particularly bad pneumonia episode that had impacted Essie’s breathing, feeding and epilepsy, we were told ‘you can take Essie to Chestnut Tree House’. We knew the end was getting near and we’d entered her end of life.
The ambulance transfer was surreal as I honestly thought Essie might die before we got to Chestnut Tree House, but she didn’t. And she survived this first end of life episode and came home. And then she survived the second end of life episode. And the third. But the end of life is only the end of life if the child decides it is, so each time Essie came home from Chestnut Tree House. We were exhausted, we were emotionally broken and then we realised what she wanted. Even though from the first day we knew the life-limited prognosis, we were always adamant that we didn’t want Essie to pass away at home, she wanted something different. Essie wanted to stay at home. She wanted to be around her triplet brother and sister as loved hearing them play and scream and treat her just like any other sibling. So, at home, we stayed for her fourth end of life episode and it was only the fifth one that proved too much for her.
Essie passed away on Sunday 13 August 2017 at 2:12am – forever 18 months old. The same night as a meteorite shower was seen outside in the night sky.
No one wants to be a loss mother. Death isn’t talked about and is feared. There is a huge injustice and lack of understanding, especially when it is a baby that has died. The standard response is ‘I’m sorry to hear that’ when you say that you have lost a daughter at 18 months old. And the conversation ends there. Ask me her name, please. Society doesn’t like to see grief being visible. It’s too hard. It’s too personal. But I want to grieve and keep saying Essie’s name. I owe it to Roman and Eva to be as open and honest as I can.
They know Mummy and Daddy miss Essie, as we tell them. Roman and Eva are our ‘beautiful distractions’ and they are Essie’s legacy. But they know Essie’s gone and isn’t coming back. Even if they still ask to ‘cuddle Essie’ and when Roman asked me for ‘Daddy’s ladder to go to the stars to cuddle Essie’ that was probably one of the few times I burst into tears in front of them. Their innocence and matter of fact approach to their life after Essie is truly humbling.
The first year after a loss is hard, you have no idea how you will cope. Essie died on a Sunday night and for the first year every Monday I struggled, every day I’d cry, some days you just don’t want to do anything. Those first anniversaries are your tormentor: first Christmas, first birthday, first Mother’s Day (that was a hard day), first Father’s Day, the first anniversary of Essie passing and then I thought we were done. But I forgot the anniversary of her funeral and that day was so very hard as I felt exposed and unprepared. Year two is proving a bit easier, but that’s because I know what is coming in many ways. I know that grief is forever. I know I will give anything to kiss Essie’s curls and inhale the scent of her hair one more time.
Life goes on. It might be a cliché, but it does. Every day you wake up without Essie and keep going. The sadness you constantly carry after losing a child can knock you sideways in a flash, the nightmares haunt your sleep and you know that feeling of loss in the pit of your stomach (and the back of your throat) will never go away.
Roman and Eva need a life that is as normal as possible and full of love and happiness. Our life and home are always going to be full of craziness – how can it not when you have two toddlers that are their own little gang. Roman and Eva are living life to the full. They never stop moving, talking, eating and are fearless – it’s almost as if they know they must carry on Essie’s legacy.
Essie’s life isn’t one of sadness. It’s one of fight and hope. When someone says ‘no’, you never accept it and you keep going. Fight forever. No matter what. One minute, one hour, one day at a time.
I am proud beyond words about how my darling little girl can touch so many people and change them forever. I will be forever grateful to all darling Essie Pops taught me. I am a better person for being her Mummy.
- by Lorna Cobbett, @mummylovesessie