This is grief (and this is and this is…)

Grief isn’t what I expected it to be. People don’t often talk about it, even though everyone will go through losing a loved one at some point in their life. I’ve never lost anybody close to me before and even if I had, I’m not sure it would have prepared me for Etta dying anyway. I think Sam would agree that losing his mum and losing his daughter felt very different. I wanted to share about my experiences of grief so far- and they are only that- my own experience but I still hope it might resonate with those who live with grief and those who don’t, especially if they are supporting somebody who has been bereaved.

Grief is different for each person.

There are as many different types of grieving as there are people in the world. How can there not be when there are so many different ways to grieve? We’ve seen it time and time again in our own family- there are so many different ways of trying to manage the grief and move through it. I know that I’ve already grieved in thousands of ways: keeping busy to distract myself and then poring over her medical records and screaming ‘How did this happen?’; listening to music and sobbing into my pillow and then sharing photographs with her big brother with a smile on my face; talking about her at every opportunity but then trying block all traumatic memories (and failing).

I’ve found great comfort in being able to write and share with other bereaved parents… whilst that is probably Sam’s worst nightmare 🙈

My grief has looked different every week and probably more likely every day or every hour. I think the real challenge is allowing other people to grieve in their own ways- Sam’s grieving looks different to my own but is still just as valid. You can’t project how you want to grieve onto others so it can feel a little solitary sometimes even when you’re sat next to someone else who is grieving. Sam and I are also learning to allow ourselves to grieve however we need to each week.

I think that can be hard to keep up with if you are trying to support somebody who is going through bereavement- but questions like “What has been helpful for you this week?” Or “What reminded you of Etta this week?” are probably easier to answer than “How are you?” or “Are you OK?” I only ever think warmly of people for asking that question because they are checking in on me and I would much rather that than radio silence!! But honestly I don’t know how to answer it and summarise briefly how I’m feeling at that time. “Last week I was very depressed and not interested in living and this week I’m more hopeful” or “I’m getting through the days but I’m devastated that she’s not with me and I don’t think I’ll ever be truly happy again”. These are pretty weighty answers for an innocently asked “Are you ok?” Or “How are you doing?” I think unless you’re asking it every hour/ day/ week, it’s impossible for a grieving person to answer and the questions might need to be a bit more specific.

Grief is not linear.

When I was holding Etta in my arms after she died, one of our intensive care consultants came into see us. He said “It will get better. It will get worse. It will get better.” I can still hear those words as clearly as if he was next to me now. And it sums it up completely- I assumed things would get easier with time but they don’t. The initial shock and rawness wears off but then the grief and the loss remains. I’ve been warned lots of times that the second year (or subsequent years) can often be harder than the first year after a loved one dying. I can imagine that grieving openly is more accepted in that first year and less so as time goes on and there is also a horrible realisation that this grief won’t ever leave.

Talking with people who are much further on in their journey of losing a child has shown me that the moments of deepest grief can happen much later than that first year and they can be more debilitating because they are almost unexpected.

Sometimes you can anticipate the grief triggers and sometimes you can’t. Yesterday I was really sad going through Ezra’s health records (red book) to fill out a form for nursery. It hit me that I would not be doing this for Etta- I expected to need that red book a lot with her complex health needs and yet instead it is in a box in the attic with her other things. Whilst there are some things I expect to hurt, like pregnancy/ baby announcements and baby showers, but sometimes there isn’t much warning before you hear the news. I just hope that I get better at recognising the triggers and protecting my heart when they do come along.

It will get better. It will get worse. It will get better… (ad infinitum)

I find this photo so hard to look at because it brings me back to that moment so clearly. Etta had just died and it was the first time I could properly hold Etta without any wires since her birth. It was everything I wanted and yet everything I didn’t.

Grief can be hidden.

I remember seeing the slogan “Be kind-everybody is fighting a battle you know nothing about” and thinking it was a bit cheesy. But actually, it probably is the truth for lots of people. I know that people would often look at us as a happy family of three with not a care in the world, even on Christmas Day morning in the park just after Etta had died. I look back at photographs from around that time now and can see I’m completely broken but I don’t think strangers would and probably not even some friends.

Hiding grief is a tough one for me because I have always just got on with things and put a brave face on. I didn’t realise it, but I think a big part of my identity centres on seeming calm, capable and steadfast. For me that is a sign of strength and losing Etta has made me have to re-evaluate that part of my self. I’m now starting to see that showing you’re struggling and sharing your vulnerabilities (like in this blog) is stronger than just pretending that you’re doing ok. The ‘It’s Ok to not be Ok’ cultural shift is happening slowly but that stigma is still there. I find it hard to reconcile the Emily who has always been fine to the Emily whose daughter died and there’s no chance of just powering through it.

Apart from Sam (who is now used to it!!) I don’t feel comfortable with crying in front of others. I apologise when the tears start to fall. I realised very early on that I would be doing a disservice to myself and this grief ‘journey’ (that nobody ever wants to go on) if I carried on trying to look like I was fine. But it’s still something that I find really hard to do and it doesn’t come naturally at all.

I think the ‘you’re so strong’ narrative perpetuates this. A lot of people say this as a positive thing to say following a loss and I’m sure some people find it empowering. I’ve been told it lots of times but I disagree with it- I’m not any stronger than I was before Etta died. I didn’t choose this and I’m just grieving the only way I know how to. I feel lucky that I had a very stable mental health before this happened but that isn’t strength. Of course there is a sense of “if I can overcome this, then I can overcome anything’ but really I’m probably weaker now because it wouldn’t take much anymore to tip me over the edge! Everyone is ‘strong’ because when tragedy strikes, you either dig deep or you give up. Hopefully, most people won’t have chance to demonstrate their strength and resilience but I think we’ve all got it within us. Unfortunately, telling someone they are strong/brave all the time may stop them from admitting when they’re feeling weak and reaching out for help.

Another problem with grief being hidden is that it’s easy to forget that grief is still there, even if they can’t see it etched across your face. Somebody recently told me they were worried about sharing when they were missing or thinking of Etta in case it came at a time when I was happy out and about with Ezzie and it made us sad. But let me reassure you that people always love hearing about their dead loved ones. We are always thinking about them so you’ll never ‘remind’ us. I think the greatest fear, (especially when it’s a baby who has died so there are very few memories of that person) is that they will be forgotten. I’m always touched to hear Etta’s name because I don’t get to hear it very often anymore.

Pained smiles as our last picture of the 4 of us together.

You need to give yourself time to grieve.

I felt like this was handed around a lot when people were giving advice in the early days. And it always seemed a bit pointless to me. Obviously I was going to give myself time to grieve- I missed Etta all the time and I’ve got the rest of my life to grieve her death. But actually I think I understand it a bit more now. I think it means allowing yourself to feel what you want to feel, when you want to feel it and for me it also means carving out time to reflect on all that has happened.

Some people don’t feel ready to reflect straight away after a death or traumatic event. Some people need to defer those raw feelings and distract themselves for years before they really face that grief head on and I think that’s OK- you just have to do what you need to do in order to survive. But one way or another- it’s going to rear its ugly head one day so I’m trying as best as I can to face the memories and emotions as they arise.

Back in January, Ezzie started going back to nursery while Sam and I were still on parental leave. Of course, there is immense sadness in being on parental leave with no baby to parent. For me, I took great comfort in taking an Etta day and started writing a scrapbook of her life. I really needed that time to set aside to her and when lockdown started, I really struggled without that day- that one day a week to just have with Etta and grieve. I’m hoping I’ll be able to take a bit more time to do that now September is here.

I managed to use messages and photographs to fill a scrapbook for you with what happened. We took lots of photos in the hope that we would be able to show you as you grew older.

A friend shared with me her view that on days when the grief feels overwhelming and like you can’t cope- then those are the days where your child who died is in front of you demanding your attention. Because just like a living child who will continue to shout at you persistently until you give them the attention, the child you lost will do that too until you give into the grief. And the times you physically ache from crying and missing them is the times you have stopped to show your dead child love and affection, as you would a living child. I think it’s a good way of reframing grieving as something that is necessary for our mental health. It’s not ‘dwelling on the past’ and ‘stopping yourself from moving on’. It’s an important part of life after a loss.

So yes, you need to give yourself time to grieve- for the rest of your life as it turns out.

You can’t complete grief.

Sam and I spoke soon after Etta died about ‘completing grief’ or rather that you couldn’t. But in those first few weeks that was all I wanted to do- I just wanted to get through the grief as quickly as I could and feel back to normal again. I wanted to get an A* in grieving and jump through all the hoops so I wouldn’t feel like a huge part of me was missing. I see time and time again now bereaved mothers in their first few weeks of grief saying they just want to fast forward to a time when it doesn’t hurt anymore. As if that was a possibility…

Sometimes, I feel strong enough to reframe the grief positively- ‘Grief is just love with nowhere to go’ or ‘I will grieve forever because I’ll love Etta forever’. Sometimes, I can focus on what her death has blessed me with: a greater sense of empathy and purpose in this life and an appreciation for the important things because it could all end tomorrow. But a lot of the time I just mourn both Etta and the person I was before this happened.

Right now, I feel heartbroken seeing photos of me with my Etta bump- a happy family of 4- Would I go back and warn them what was in store if I could? I don’t think so. I think I’d let them have that hope and easy joy for as long as possible. I certainly miss it.

I miss us ❤️😢

At the moment, I’m trying to fill my heart with gratitude- my promise to Etta when she died was firstly that we would love her forever and secondly that life would always be better because she was in it, if only too briefly. I plan on those promises being at the heart of my life for as long as I live. Sometimes I just need to look at pictures of Etta to remember that my life is a good one and I’m blessed in so many ways.

I’ll finish with the best summary of grief that I’ve seen. My cousin shared it with me in the early days and I still return to it now.

“You will lose someone you can’t live without,and your heart will be badly broken, and the bad news is that you never completely get over the loss of your beloved. But this is also the good news. They live forever in your broken heart that doesn’t seal back up. And you come through. It’s like having a broken leg that never heals perfectly—that still hurts when the weather gets cold, but you learn to dance with the limp.” Anne Lamott

I’m still limping. I’m still broken. But I’m still dancing for you Etta 💖

We are always trying to turn towards the sunshine for you- your big brother misses you too very much 💕🌻

🍈🍈 World Breastfeeding Week 🍼

I took breastfeeding for granted with Ezzie. Despite the few days of discomfort at the start and occasionally feeling resentful that it was all on me for night feeds, it was an experience I look back on fondly. I weaned him off when I became pregnant with Etta just because I thought sharing my body with one baby was enough. He happily replaced his morning feed with a banana!

Ezzie breastfeeding at a few weeks old

I was really looking forward to breastfeeding Etta and feeling a lot more chilled about it second time round. At the start, breastfeeding is full of anxieties: are they feeding often enough or too often? How can I tell how much they are eating? Are they feeding for long enough? Is that the right latch? If I give them a bottle will they sleep longer at night? Have I eaten something that has upset their tummy? The list goes on! And having come through the other side with happy memories, I was eager to just go with the flow knowing that each baby’s needs are completely different!

But of course that wasn’t meant to be! When Etta was first born, she was nil by mouth. She was put on a drip and given something called TPN (total parenteral nutrition) so was receiving nothing orally. Because Etta’s heart condition reduced blood flow to the lower half of her body, the concern was that her gut would not have enough blood pumping through it to digest food. There was a risk of her developing something called NEC (necrotising enterocolitis) where the bowel becomes inflamed and can be very nasty for sick or premature babies.

I remember finding out while pregnant that I wouldn’t be able to breastfeed Etta before her surgery. I asked the cardiac nurse ‘Won’t she be hungry?’ knowing that a hangry baby is not a good thing and hoping there was some remedy for this. But the answer was that yes she would be- she would be given a dummy to soothe her but she would still be wanting milk. I think this is quite a hard thing to hear as a mum because it’s natural instinct to want to feed your baby (especially if they are crying out in hunger). Sometimes, if she was particularly unsettled (having a heel prick test which she had every few hours, an echo scan or one of many other tests) we would dip her dummy in sugar syrup or some of my breast milk just as a distraction.

Trying to soothe Etta with the dummy (and probably some sugar!)

You hope that you will feel a bit more knowledgable the second time round. However, the two best moves I had learnt to stop Ezra crying (whack a boob in his mouth or walk and bounce around) I couldn’t do with Etta and sometimes it made me feel like a bit of a failure. Holding her when she was unsettled was hard because I didn’t really know what I could do to stop her from crying. Sometimes rocking and white noise would help- I think she got hooked on the baby crack (sugar syrup) quite quickly too. Often she was just angry to be close to me but not feeding. Not being able to soothe or nourish my baby through breastfeeding was tough- I imagine a bottle would have done the job too!

And then there was pumping…Etta was quickly allowed non-nutritive feeds (a little bit of breast milk for comfort rather than nutrition) and then the idea was to slowly build her up to more normal sized feeds and see how her body coped. I’d tried to express milk with Ezzie so I could share the night feeds but to no avail! And I’d tried to express colostrum in my final few weeks of pregnancy with Etta but also no dice! So I was a bit anxious about being able to pump enough to keep up supply. My hope was that in the future Etta would be able to breastfeed, even if she did also need formula to help her put on weight or need to be fed through an ng tube (tube through her nose into her stomach) for a while- both of which are common for cardiac babies.

My lovely midwife helped me express a bit of colostrum a few hours after Etta’s birth and then every few hours after that I buzzed for a Maternity Care Assistant to come and milk me! But try as I might, I just couldn’t do it myself. I asked to be discharged the same day Etta was born which was much better to get some rest, but it did leave me very stressed about how I was going to continue to express. After recruiting a few family members to express me (thanks Sam and Kim) and texting my midwife friend (thanks Becca) I realised I was probably doing OK and I would get there eventually.

It was the kind mothers in the NICU who really helped me out with pumping- showing where to find the equipment and pointing out when I was using it wrong. They told me I’d be fine once my milk came in and they were right. Some of them had been visiting that little pumping room for months having babies at 24 weeks and waiting to go home- I felt like a bit of a fraud knowing I would only be in NICU for a few days. But it opened up my eyes to the dedication it takes to feed these little poorly babies.

I saw a statistic this week (as it’s World Breastfeeding Week) which said that breastfeeding for a year is usually about 1800 hours, and a 40 hour full-time job is 1960 hours. Breastfeeding is basically a full time job- so expressing your milk and then actually feeding it to your baby (through bottle, tube of syringe) must be like working 2 full-time jobs!! I certainly found pumping around the clock more time-consuming and disruptive than breastfeeding. When breastfeeding, I could basically do it anywhere discreetly, but I didn’t feel that it was acceptable to sit in the middle of a cafe and attach a transparent funnel to my boob and pump- with my areola on full display for all and sundry 🤦🏼‍♀️. There’s nothing discreet about pumping and especially not if you’ve got a hospital grade pump (think big old machine) attached to you! I suppose it should be acceptable (it would have made my life much easier) but it isn’t yet.

Feeding Etta through her NG tube (this was a long process where you first had to aspirate the stomach and check the pH levels to check the tube was in the correct place and then fill the syringe of milk up until it had emptied- then put a little bit of water down it at the end to clear through the tubes)

I spent a lot of my time with Ezzie pumping, which meant I couldn’t really play with him the way I wanted to and there wasn’t a pumping room in PICU which meant I just had to hide behind Etta’s bed space. On days where there was a lot going on around the bed space, there was nowhere to pump unless I wanted to get in the way so I would sometimes just go to our accommodation in order to pump- definitely not as easy as breastfeeding. Too much to think about and it came around too often! I would feel like I’d just finished labelling, sterilising and storing the milk before it was nearly time to start again. Cluster feeding can be relentless but for me this was harder- still relentless but without any of the lovely oxytocin of holding my baby.

There’s one memory that really sticks with me. It was the day before Etta’a cardiac arrest and the first day in a while we had been able to hold her properly because she’d had her breathing tube taken out. I had lots of cuddles with her that morning. She had been hangry so I had to do as vigorous rocking as possible while sitting down and without moving too many of her wires. As it was, she would set off the machines every minute or so with her wires in the wrong positions! A few hours later, I was setting up my pump behind her bed and she was crying again. The nurse asked if I would like to hold her again as Etta seemed to settle before but I said “I’m just setting up as I need to pump” so the nurse helped to soothe her. I didn’t get to hold her again until the day she died. I still feel sad that I didn’t take the opportunity to hold her that last time. And I’m not sure if I was using pumping as an excuse so as not to seem completely useless when it came to my own baby.

Etta kicking off her blankets while we try and get to her through the wires!

I think although pumping was time-consuming, it felt like the only tangible thing I could do for Etta. I resented having to schedule it in all the time but also I was proud that the freezer in PICU was bulging with bottles of milk with lots of the staff commenting on my great supply. And I was happy that she tolerated small feeds for a while before and after her first surgery. At least expressing wasn’t all in vain!

A week before she died, when we were told for the first time she was unlikely to make it through the night, I stopped pumping. I just felt it was soul-destroying to be expressing milk for a baby that would never need it and that it might take me away from precious moments at her bedside. Then in the morning, when she was doing better again I felt so wracked with guilt because it felt like I had given up on her. I vowed to myself that I wouldn’t stop expressing until she died and that I would have hope of her recovery until the final moment.

Christmas Day morning was spent in the bath sobbing while hand expressing my engorged breasts to try and remove the blocked milk ducts. I couldn’t even hug Ezzie the day after Etta died because I was in too much pain. But I was just desperate to stop making any milk for my baby that was no longer here. I have huge respect for those mothers who continue to express milk after their babies have died and donate it to those in need- It is a beautiful legacy for those babies who died. I certainly couldn’t face continuing to pump milk and have all the blood and medical tests required to donate it. I just said I was happy for them to bin the lot- they are still finding more bottles months later.

So for World Breastfeeding Week, two very different breastfeeding journeys. But I think what I learnt from both was that even when breastfeeding appears to come ‘easily’, it takes a lot of dedication. There is a reason why breastfeeding rates are so low in the UK- it is hard work, support can be very hit and miss and also there is a lot of anxiety, guilt and self-doubt when it comes to feeding your baby. I am very much of the opinion that fed is best- however you end up doing it. What my days in NICU really highlighted for me is that we as parents (and especially mothers) do whatever it takes to make sure our babies are fed and happy. This week I think it’s important to remember that just trying our best is enough.

An Open Letter to my Niece

Last week my beautiful niece was born. She is our eighth niece (!) but is the first on my side of the family, my brother’s first baby and of course the first baby in our family born after Etta. I can’t imagine what it’s been like for my brother and sister-in-law to have their first pregnancy, whilst grieving for Etta and during a pandemic but needless to say they have always put our feelings first throughout their pregnancy. I’m really thankful for their thoughtfulness but also just really angry that they have even had to consider our feelings in a time which should be the most exciting of their lives. But such are the ripples of baby loss- it affects so much more than you think.

I recently read an article from Still Standing magazine which was an open letter to the writer’s sister-in-law expecting a baby after the death of the writer’s child (You can read it here if you’d like). And although some of it resonated, I also found that it was missing so much of the emotion that I felt for my newest niece. So this isn’t a letter for my brother and SIL (although I’m sure this letter is as much for them), but this is a letter for Lily.

Beautiful lilies on Lily’s birthday

Dearest Lily,

As I am writing this, you are only 10 days old. I’ve only met you once and I haven’t held you yet but your safe arrival was very much at the front of my mind these last few months.

When I found out you were a little girl when you were growing in your mummy’s tummy, I felt a lot of different emotions. Our little girl (and your big baby cousin) Etta had died a few months before and I was finding everything very hard without her. I think we all thought that if you were a boy, things might be a little easier and maybe less comparisons would be made between you and Etta. I’m not sure if that’s true, but it was definitely hard to imagine a new baby girl arriving into our family so soon after one leaving.

On the morning of the 30th June, your daddy sent us a message to say you were on your way into the world. I cried and cried. (Don’t worry- I promise it will only be cakes, smiles and presents on your birthday from here on in). I know that your mummy and daddy want you to grow up knowing about your cousin Etta, but I think you might only understand the significance of the timing of your birth as you grow older and if you have your own baby one day. I’m actually hoping that you’ll never truly ‘get’ it.

But on the morning of your birthday, I felt like my heart was breaking. It was breaking for thousands of reasons and nothing I could do would stop the agony I felt. And then a few hours later, you were born. And the pain stopped. My heart still felt a little tender and bruised, but it was also swelling with love for a little girl I hadn’t met yet: you.

Little Lily going home (wearing Etta’s hat and wrapped up in Ezzie’s blanket 🥰)

After your cousin Ezzie was born, people often asked me if motherhood was what I expected and I always answered ‘it’s much harder than I thought it would be and much more wonderful than I could have imagined’. This is what I think it’s going to be like watching you grow and flourish.

There will be bittersweet times along the way- when you get to 4 weeks old and then carry on getting older while Etta stays forever 27 days. When you start school in your oversized uniform and Etta is not starting with you. When you perform in your first nativity or assembly (I have a feeling Etta would have been typecast as an angel, while you’re a shoo-in for Mary). When you maybe walk down the aisle or start your own family one day. I know that these will serve as reminders for the things that I wished for Etta’s life. And yet I know, that because Etta is gone, I will find joy in these special moments even more. I will be celebrating you and cheering for you every step of the way.

Lily- you are your own wonderful person and your parents’ own pride and joy. You’re not Etta and I don’t wish you to be. So I promise that you won’t ever feel in Etta’s shadow- I like to think that you’ll forever be in Etta’s light. Losing her will make everything you do shine and you’ll be even more precious.

So, as you grow older and sometimes catch me looking at you with tears in my eyes, please understand that these tears are not just of sadness for our little girl that died but also of pride and delight in watching you live.

I love you immeasurably, Auntie Emily xxx

Playing with her Etta Loves muslin 😍

Being Etta’s Grandpa

I asked my own dad if he would like to write something on this blog for Father’s Day. He wasn’t too sure but reading his words I’m so glad I asked. It reminds me that the death of a baby or child isn’t just felt by the parents and that my own father is no stranger to death and grief. A grandparent’s pain is unique- having lost your own grandchild and also watching your children suffer the worst pain imaginable. On the day of Etta’s cardiac arrest- my dad turned up with sandwiches. For me that sums up my wonderful dad completely- always there when I need him and always trying to fix my problems anyway that he possibly can. These are his words ❤️.

Me and my Daddy- an uncanny resemblance to Etta here!

It’s Father’s Day. It’s the longest day. One or the other prompted Emily to suggest a guest post on this Blog. What’s a Blog? The only one I know of is this one. My daughter’s excellent, moving, traumatic words arrive on my iphone via email and are read through floods of tears immediately after they ping to announce their presence. What can I say? How can my words add anything to those that have been so well written previously? Just another challenge of being a dad…

Actually whatever I turn out to have achieved when my time is up, it’s being a dad and more recently a Grandpa that frankly matters most to me. My hope is, that so far, I’ve got some of it about right, although there have no doubt been some gut wrenching clangers dropped along the way – including inducing a panic attack when teaching Em to drive! It seems to me most of us love our mums as a given (although my mum fell out with hers quite early on!).  When I see Emily with her son, Ezra, there is evidently an unshakeable bond generated probably from the first thought of conception.  True also of the relationship between my wife, Alyson, and our children (and now she’s the favourite grandparent!) Dads, I think, can find it a little harder. There was no paternity leave when my son or daughter were born and serving in the Royal Navy meant a constant juggle of priorities to ensure as much “quality time” as possible was achieved. So I think many of us work hard at the “protector and provider” role – we concentrate on “doing stuff”.  We want our home to be comfortable and safe; we want our children to have nice clothes, toys and be well fed.  We want to protect them from the dangers that they face… if they fall over we leap to pick them up as fast as our bodies can achieve. If they hurt themselves we drive them to A&E as fast as we safely can and rush them to the medics – elbowing everyone else out of the way!

As they grow older we want to protect them from other hurts – rubbish boyfriends (not Sam!),  difficult times at school, bullying boys in Air Cadets, flute practice, algebra(!!), and any possible hint from any external source that they are not the most stunning and capable people we know. It’s against this backdrop and context that Ally and I have loved being a part of Emily’s adult as well as childhood life.  We’ve loved seeing her enjoy university, struggle though Teach First training and jobs in inner city schools, meet and marry Sam (I wish I’d done a better father of the bride speech), give birth to our most wonderful grandson ….. leading to the day she announced last year that she was expecting our first granddaugher, Etta.

I confess I was delighted at the news…not least because we had also managed to achieve son followed by daughter which appears to have been a successful combination! We had managed to acquire a regular babysitting “gig” each week and were looking after Ezra when Emily and Sam had the now memorable 20 week scan. Picking your daughter up with skinned and bruised knees following a fall pales into insignificance when faced with the distraught face of your daughter returning home with the results of such a scan – through sobs and hugs we learnt of Etta’s wonky heart.

To be honest, part of my reaction to the news was deja vu.  My mum had struggled with bowel & bladder cancer through my teenage years and died during my final year at uni.  Not that long afterwards my dad suffered a stroke which left him unable to speak and Ally had to deal with 2 major operations for a brain tumour – the second being delayed when they realised she was carrying Emily who had been bombarded with all manner of scans in the first few crucial days of her unborn life. My dad died of a heart attack just before Emily was born while my brother’s wife was fighting for life following the premature delivery of my nephew. We had acquired an expression in our household as a result  – a “Plague of Frogs”- derived from the plight of the Old Testament Egyptians who were plagued with locusts and boils and pestilence and flies and lice and… frogs!

The following few days after Emily’s scan were punctuated by “news from the front” via WhatsApp and Facetime as more scans led to discussions with the experts in Bristol and the way ahead was outlined. We believed we were staring at a troublesome few months but had every expectation of going to Etta’s graduation and 21st birthday party. In fairness – I had developed a strategy of optimism against my default nature (ask anyone) that survived until the morning of 23rd December 2019 when we were having breakfast in the basement of a café opposite Bristol Children’s hospital waiting to hear the outcome of Etta’s most recent surgical intervention.

In my experience when the medics ask you to wait in the “Family Room” – brace yourself! We had enjoyed the privilege of seeing Etta most days since her arrival into this world 4 weeks earlier– frequently chatting with the incredibly talented specialist staff, admiring of, and humbled by, the array of specialist equipment she was plugged into and been aware of her condition on an hour by hour basis. In the Family Room we learnt that Etta had fought hard for her precious life and at many stages had defied predictions but despite my repeated, constant shouting at/to/with God for a Christmas miracle the particular answer that we had desperately hoped for didn’t happen.

Etta and her Grandpa 💕

As a dad I had done what I thought I could – we’d set up camp near the hospital in Air BnBs and enjoyed looking after Ezra and feeding his parents as best we were able. I’d prayed as hard as my splintered faith allowed and roped in mates and clergy to do likewise. We’d had some very precious time with our son and daughter-in-law (also expecting a baby). I’d tried to stay positive and supportive and all of that stuff – But it is really soul-destroying for a dad like me not to be able to fix things…That’s what I want to do – fix it. I couldn’t. Christmas day was rubbish. The day we celebrate the arrival of baby Jesus, we five lost souls went to an empty pub in Bristol – utterly broken – lost for words – numb – destroyed. I had lost my granddaughter but I had a daughter and son-in-law who were shredded. Emotionally. Physically. Spiritually.

Days then weeks went by. Etta’s funeral was without doubt 10.1 on the sad scale – sadder than my mum’s even though she died aged only 48. The service experience was without doubt softened by the wise and witty words of, Sam’s vicar brother, Tom, who led the service and whose opening words incorporated the phrase – “Well this is shit isn’t it….”

Brief holidays were quickly overtaken by the need to lock down due to CV19. More frogs! Emily, Sam & Ezra leapt into their car at the first hint of this possibility and we have locked down together since – a few days taken to pack their house before moving to a new house nearby was punctuated by more dismay. Only recently aware Em was again “expecting” we found ourselves messaging and facetiming as Em was about to head into hospital with a possible miscarriage – festering frogs again! A brisk drive later and we stood in the car park of Gloucestershire Royal Hospital to wait with Sam.

Yet again we were helpless and lost as our daughter’s face informed us of the outcome of her examination. Team hugs and tears aren’t enough but it’s all we had.

And now; not a new chapter but perhaps a new paragraph – a new Woolford home in Salisbury – near enough for us to walk to and from after medicinal wine or gin. We expect the busy days ahead will be a chance to focus on more positive things for a while but know already to spot those thoughtful faces and glazed eyes as thoughts wander to difficult memories and dashed hopes.

And here we are again- I’m just Ezra with curlier hair! ❤️

To conclude this rambling post – I love my children – and their spouses – and our grandson to bits. I take comfort in, and am extremely proud of, their loving nature and relationships with each other and their clear competence and passion to make the world a better place for them being in it. Etta was all too briefly part of our gang but she was equally loved and we will so miss seeing her grow up under the loving care of Emily and Sam. She will be the prompt for many tears yet to come and there will be painful times ahead – I can’t fix this – but I’m hoping that our shared experiences and memories will allow, at least in part, chance to share out the pain just a little.

I had a miscarriage.

It was hard to think of a title for this blog post so I thought I’d just come out and say it. I never ‘announced’ I was pregnant with Ezzie or Etta on social media until they were born so it feels strange to be announcing this pregnancy and the end of it in one go. But for me, it would be far stranger to not acknowledge it happened than to write/talk about it. So here it is- my very normal miscarriage story. (***I suppose I should give a trigger warning again around here- don’t read on if you don’t want to hear about. I’ve tried to be honest and haven’t shared everything but it is a bit graphic in parts***)

Back in April, I started to have some familiar rumblings. I knew it before I even took the test. It wasn’t planned and I didn’t feel at all ready to be pregnant again. It hadn’t yet been 5 months since Etta was born so when the 2 lines popped up in the little window, I just sat and sobbed for a while. Those that have faced pregnancy after a loss will know that a positive pregnancy test will never have that carefree excitement again. I felt anxious and I felt shocked but most of all I felt really guilty. I worried what people would think about ‘moving on’ so quickly and replacing Etta. It took me a few days to get my head around it- we shared the news with our immediate family who did an excellent job of being happy for us while also understanding our mix of feelings.

Not quite the same elation at finding out about Ezzie and Etta

It was a very different pregnancy from the start- I had some light bleeding early on which I never had previously. However, I knew this was very common and thought it even more likely given the small gap between my pregnancies. And of course there was the anxiety- I am naturally a realistic and positive person. Reason told me that I was no more likely to lose this baby because Etta had died before. I know lots of statistics now for miscarriage, stillbirth, certain defects, neonatal death and I also knew that the most likely scenario was that in 8 months time I would be giving birth to a healthy baby. But I just felt like if I could be on the wrong side of statistics before, it could definitely happen again. I think my subconscious also felt this because I was having dreams most nights about either miscarrying or delivering a stillborn.

The other thing that was different was that I really felt like I bonded with the little bean growing inside me much quicker than in my other two pregnancies. I think Etta dying really opened up my eyes to this time being precious and enjoying every day. I look back on my pregnancy with Etta and wish I’d taken more photos and had more time appreciating her growing inside me. I didn’t want to make that mistake with pregnancy number 3 and maybe I needed to compensate for my negative feelings at the start. I knew that the sadness and guilt I felt were nothing to do with the love I already felt for ‘bumblebee’ as I had affectionately named it. We had bumblebee blinds left behind in one of the rooms of our new house so excitement grew thinking about what would one day be bumblebee’s room.

Weeks marched on into May and I had a little bit of nausea but not as much as I had done (with E and E) and I was definitely tired but not as tired as I had been. The problem was that it was very hard to tell if this was just me playing down symptoms because of my fear of miscarriage. It was hard to trust my memories, even though of course it turned out that my instincts were right.

I started spotting on a Saturday but didn’t think much of it. I’d had it a few times at the end of my pregnancy with Etta and presumed it was my cervix feeling a bit irritated (like me🤣). Google told me my chances of miscarriage at this stage were only 2-4% so wasn’t particularly worried. I’d even bought Sam a Father’s Day present that morning from baby bumblebee (I knew it was a risk but also that we would have had our scan by then) However, I woke up on Sunday and the bleeding was getting heavier- more like a period now. I remember at this point crying to Sam and saying “I’m a bit worried now.” We had plans to sit in our friends’ garden and I didn’t want to cancel because I still wasn’t sure if this could just be normal- I just needed to distract myself. And sadly I knew that if I was miscarrying there was nothing I could do about it anyway.

We were having a lovely time chatting to our friends in the garden and talking about my concerns but I noticed the bleeding was getting heavier and heavier. I had started to pass clots and that’s when I thought this isn’t right. I found it soul-destroying to be putting my hands in the toilet bowl and fishing around for clots just in case I might find something resembling an embryo. Luckily, I didn’t but that will always stick with me. It was at this point I called the maternity triage at Gloucester Hospital to hear what they thought. They told me that I would need a referral to the Early Pregnancy Assessment Unit (EPAU) so to call 111 to get a referral from a doctor. Having concerns in early pregnancy is actually really shit. It’s nobody’s fault but I really didn’t know who to call in that situation- I wasn’t yet booked in with a midwife, my GP was in Salisbury, you can’t use maternity services until you are 16 weeks- the early pregnancy unit is actually part of the gynaecology department. It felt like the start of a wild goose chase that day and I’m sure so many others have had to go through that confusion too.

After a call with 111- they told me to head to A and E (presumably worried about my blood loss). This wasn’t ideal with the coronavirus situation but I thought it would at least get me seen and referred to the right people so off we went. The hard thing was going in with a mask on, standing back from the receptionists and trying to explain what was happening. Of course, Sam was asked to stay outside. I should have said “I’m 9 weeks pregnant and I think I’m having a miscarriage.” But instead what came out was me rambling about bleeding in front of everyone in the very quiet A and E waiting room. I couldn’t quite get the words out that I needed to. The receptionists were so confused they had to check I was pregnant. But they were lovely and asked me to take a seat before I was quickly called in to see the triage nurse. I quickly learnt that face masks are actually very good at absorbing tears.

Waiting it out in A and E- I kept holding onto my Etta necklace for luck.

She took my obs and asked about other pregnancies which of course led to me talking about Etta or trying to talk about Etta. Because nearly 6 months on from losing her, I’m still terrible at talking about what happened so I just sort of cried and managed to get some words out. She told me I didn’t need a doctor’s referral and she could do it for me there. She was very understanding that I must be worried about this baby too. Unfortunately, because I was so stressed out talking about Etta- my blood pressure and pulse were through the roof. At this point I just wanted to go home and wait for my appointment but I went through to another room and had a HCA take everything again- my blood pressure was a bit lower but now my oxygen sats were too low (they came back up after trying a different finger!) I suppose when I turned up, I didn’t really think about it being the first time in a hospital since Etta had died- but it was really triggering. I was surrounded by bleeping machines, talking about oxygen sats and my daughter dying while thinking I could well be losing another baby.

I had to wait again to speak to a consultant. I think this was because my pulse was still so high they had to check this was due to stress not blood loss and it did come down eventually, after more tears and a box of tissues from the A and E consultant. He asked about Etta’s defects and whether we were more likely to have children with birth defects. He was lovely and tried to get a referral to the EPAU for that day but couldn’t get hold of them. I told him I was used to waiting for scans and it was OK. He said “it’s not really OK though, it’s really hard waiting” and very gently told me it’s not an inevitability but you should have it in your mind that you could be miscarrying. I told him I was preparing myself as much as I could.

So I went home and thankfully was called by the EPAU fairly quickly. They said that given the current pandemic they weren’t making appointments unless there was any pain. At this point, I wasn’t in any but she said that because of Etta, they would fit me in to ease my anxiety. It makes me very sad to think of all the mothers who are worried they are miscarrying but have to wait to be in pain before they are seen. Stupid coronavirus. I was booked in for the following morning so tried to put it out of my mind.

I continued to bleed heavily through the night and by Monday morning it was more like post-partum blood loss. Everything about my body just felt wrong- I had strange sort of tingling pains in my lower back, bum and into my legs. I also had cramping abdominal pain- which wasn’t intense like labour pain but had the same rhythm of contractions- paracetamol wasn’t really touching the sides (this was familiar). At this point, I knew that I must be having a miscarriage. Suddenly, I felt the urge to go to the toilet (this was also familiar) and whilst sitting on the toilet I passed lots of large clots. I was holding my hands out because I was expecting to pass something soon which felt different and sadly I did. I held something in my hands and I knew it was the embryo/ pregnancy tissue/ remains of conception. Whatever you want to call it- I just felt horrified that I’d delivered what I considered to be my future baby too soon on a toilet. I was sobbing and shouted to Sam “I think I have it- I think this is it”. I didn’t know what to call ‘it’. Poor Sam had to walk in to the bathroom- blood everywhere- with me holding ‘it’ in my hands, while I sobbed that I needed to keep it. I wanted to take it to hospital with me so they could confirm what it was. So what was my baby a few hours ago was now in a nappy bag.

Then what are you supposed to do? I just thought I’d wait it out until the appointment but Sam wanted to call 111 just in case. It’s a situation you just never prepare for- thank goodness for 111. They asked strange questions like had I bled more than a mug of blood in an hour or passed bigger clots than a 50 pence piece. 111 wanted to send out an ambulance to check me over (which I thought was overkill). I think Sam was worried I was going to die at this point but since passing the ‘pregnancy tissue’ I felt physically so much better. The pains had gone and I felt back in control of my body again. Fortunately, the lovely ambulance dispatch lady gave me a call and I assured her that I was OK. I just had to stay hydrated and keep an eye on the blood loss. My appointment was only in 2 hours time so I would go to that and see what they said.

So I sat in the hospital by myself again- with my nappy bag of remains in my handbag. I was pretty certain I had miscarried so I suppose I was hanging on to some hope that maybe there was still a twin in there. Or failing that, I just hoped that I had passed all of it and wouldn’t need any other procedures. I was called in to an ultrasound first of all- with a scan first on my stomach and then a vaginal one. The sonographer said there was no sign of a pregnancy and I told her I was pretty sure I passed the tissue this morning so that was what I was expecting to hear. I tried to be factual. I didn’t really want to cry in that room.

Then I had to wait back in the waiting room before the nurses came to call me into a different room talk about the scans. I did cry then- there were three nurses sat away from me with very kind eyes (most of their faces were covered with masks). They asked me what had happened and I told them what I had in my handbag. Two of the nurses took it out of the room to confirm whether I was right. While they were gone, the other nurse asked me about what happened and said that it certainly sounded like a miscarriage and told me that I would bleed for a few weeks (like a heavy period). I needed to watch out for bleeding getting heavier or any signs of infection. I would likely feel terrible for a few days as my pregnancy hormones stopped and my body worked out what had happened. I would need to take another pregnancy test in 3 weeks and check it was negative. The other two nurses came back in and told me that I was right about what I brought in.

Because I had handed it in to the hospital, I had to sign a form giving consent for them ‘to cremate the foetal remains’. She told me that there would be a service in the rose garden in Cheltenham and bumblebee would be buried there with others. I think it’s rather sweet that the results of these pregnancies are still treated with tenderness and dignity even though they are ended so early.

So I left the room with a miscarriage leaflet and went to Sam waiting in the car park for a hug. My mum and dad had come up too, after telling them what had happened that morning. I didn’t want to worry them too soon. It felt very strange that the last time they’d arrived at Gloucester hospital was when I was in labour with Ezzie. It was a sad mirroring between the two pregnancies.

That was that really- a few days of resting up and not really knowing how to feel. I was still bleeding a lot but I passed a bit more tissue on the Friday and after that the bleeding really slowed down. I felt physically like I’d donated blood and was recovering from a bug or cold. As miscarriages go, mine certainly seemed like a simple one. I didn’t have to go the 12 week scan expecting happy news to be told there was no heartbeat. I didn’t need a D and C procedure to remove any remaining tissue. I didn’t need to take medicine and wait at home waiting for a horrible inevitability. Hopefully in a few weeks time I’ll take a pregnancy test and it will be negative and it will all be over.

In a weird way, my body did exactly what it was supposed to do while doing the opposite of what it was expected to do. Despite this, I still found my very run-of-the-mill miscarriage very traumatic physically. All you find online when you are manically googling is that it is like a heavy period with abdominal cramps. And for me it wasn’t like that at all, it felt a lot more like giving birth. I think that’s probably worth knowing in case you’re ever in a situation like mine or know somebody who is. A recent study from Imperial College found that 29% of women who had a miscarriage were suffering with PTSD one month after it happened and I can completely understand that now. I think the emotional side of miscarriage is starting to be spoken about more and more but I still had no idea what to expect physically. It’s still very much a taboo and I longed for more realistic explanations of what happened when I was in the midst of it myself.

And emotionally…? This is a very strange sort of grief. It doesn’t compare to the grief of losing Etta and yet it’s so tangled up in the grief we already have in losing her. In some ways, Etta dying lessened the grief of losing bumblebee and in others of course it added to it- feeling like we’d lost another chance at a sibling for Ezra and a baby in our arms. We joked darkly that our success rate of bringing home a living baby was now only 33%. Far from ideal.

The grief I felt seemed more familiar to the grief of Etta’s diagnosis- a sort of loss of what I thought life would look like. So much of the sadness is tied to a real longing for Ezra to have a sibling close in age. I began to get excited about having ‘three under three’ with my middle child missing. I began to imagine this Christmas being ready to pop and my 30th with a newborn. Lately, it feels like my future is shaping up to be nothing like I expected it to be.

We’ve had lots of caring and thoughtful comments since the miscarriage but some less so. I thought I’d write about a few in case it was helpful to know what not to say. This is only my experience and I know women react to miscarriages in very different ways.

1. ‘It’s very common/ it happens in 1 in 4 pregnancies’ etc. For me, hearing that it’s very common doesn’t make me feel better (although being aware of it did help me prepare and it was comforting to hear other experiences). It just feels like a way to try and minimise how somebody feels. Cancer affects 1 in 2/3 people but that doesn’t mean it’s not devastating to get a diagnosis 🤷‍♀️.

2. It’s better that it happened now, not later. This is a tricky one because of course this is a good thing if the baby was going to suffer. Most miscarriages in the first trimester are believed to be due to chromosomal abnormalities in the baby. But to me that again feels like a way to try and rationalise what happened. And also, unless tests were done after the miscarriage, most people never get to find out why the pregnancy didn’t last and that’s tough to come to terms with in itself. I think this comment is more for the person saying it then the person who actually suffered with pregnancy loss. Humans like reasons for bad things happening.

3. At least…’ I’ll stop it there. You’ve probably heard it said don’t start with the words ‘at least’ with anyone grieving. I think this is true of miscarriage too. Yes of course at least I have Ezra/ I can get pregnant easily/ it’s not as bad as losing Etta etc. But that doesn’t really help with the fact that I wanted that pregnancy to continue and that baby.

4. Maybe your body wasn’t ready. This one just makes me feel a bit guilty because it wasn’t the plan to get pregnant so soon and I was worried about problems arising from having such a small pregnancy gap. Similarly, the notion that I miscarried because of the grief/ stress I still had over Etta isn’t really a nice thought either. This feels like one of those things that I’m allowed to say but nobody else is. Because my stress levels won’t really go down for any future possible pregnancies. And it just makes me feel like the miscarriage could have been avoided if I was a little more zen.

Sorry if you’ve said one of those comments to me and you’re now reading about it here rather than me saying to your face that I didn’t find it helpful! Did I mention that I’m not very good at talking about hard things at the moment? I’ve been working on having those uncomfortable conversations about race this week, so I should probably try and extend that to other uncomfortable conversations too.

This was a really long blog- I didn’t expect it to be so long but once I started I couldn’t stop. There’s still so much more I could say but I feel like I’ve processed it all now. I’m sad about what happened and I keep thinking about silly things like when our scan letter will come through the post, only to remember that I’m no longer pregnant. But overall I’m OK- I’ve come to terms with it.

I think every life is a gift, however short, and I’m grateful that baby bumblebee has given me more things to treasure. I know now that because of bumblebee if there’s a positive pregnancy test in my future, there won’t be any tears on seeing the two lines. I’ll know that I’m ready to welcome another little life to grow and hopefully the next one will stick around until we get to bring them home.

A bumblebee came into the house when I came back from the hospital. I don’t believe in signs (I keep saying this but I obviously do otherwise I wouldn’t have thought about it!!) but it was a lovely reminder that even things that don’t live for very long (like the bumblebee) have a very big impact.

Moving forward not moving on

This morning Ezzie and I said goodbye to our house in Cheltenham for the last time. It’s been a really strange week of trying to say goodbye to our favourite people and places there without really being able to. One of my close friends flew back to America this week and said because of the current situation it just felt like zero closure on this chapter of our lives which is true.

Despite that, there’s no denying the fact that living in Cheltenham the last few months has been tough. There is an Etta-shaped hole in our lives here, even though she never actually came home. And being a teacher, whenever I leave the house I see a family I know from school. I used to love living near work and seeing pupils and their families whenever I went to the local pub or park. But since Etta, seeing families from school has just filled me with anxiety. A letter was sent out to the whole school community telling them that Etta had died. I’m conscious that a lot of the local community knows an intimate part of my life. In one way this was very helpful- I didn’t have to keep telling people what had happened. I recently bumped into a parent at the park whose child had left the school so didn’t know and I still struggled to get the words out without crying. But part of me doesn’t want to be ‘the teacher whose baby died’- I need a fresh start somewhere else.

But it didn’t always feel like this fresh start was wanted. I can’t help but think back to the first time we considered moving house. It was early in January (and a few weeks after Etta had died) when Sam told me the house that we’d looked at last year in Salisbury was back on the market. We’d had a look round in April 2019 on a bit of a whim and for a bit of fun-we didn’t seriously want to leave Cheltenham yet. We were happy in our jobs, I was pregnant with Etta and Sam was due spinal surgery in a few months so it was definitely not the right time. But we liked it and it was only a few doors down from my parents house and next door to some old family friends. It gave us an idea of the sort of house we would eventually want to move in to. Inevitably, it sold and we didn’t think more about it until it was back on Rightmove having never completed the previous year.

Initially, I just cried and cried at the thought of doing anything without Etta with us. If she was still alive, there was no way we would be leaving. I had daydreamed in detail about what our life would look like in Cheltenham with Ezzie and Etta- where Ezzie would go to nursery, what classes I could take both of them to, meeting our friends for play dates who had children the same age. We were supposed to be staying in Cheltenham and further down the line, she was supposed to be with us for our next chapter of moving house. I felt immense guilt at the thought of leaving her behind in the place we should have brought her home. It felt like we were betraying her by ‘moving on’. Really, it was just too soon for me to make an important decision that would mean facing the reality of a life without her in it.

But after a few weeks, I realised that I didn’t want to miss out on this house just because I didn’t feel ready because I don’t think I would ever feel truly ready. We looked back around it and decided that it was the right place for our family. Losing Etta made us really focus on what our priorities were in life and spending precious time with family was number one. It seemed silly to wait to be near family especially when we need their support more than ever now. So we put the offer in and it was accepted.

I thought we would have more time in Cheltenham but coronavirus had other ideas and we ended up in lockdown with my Mum and Dad in Salisbury. It has left me with less time to be sentimental about what we are leaving behind but I still can’t help but reflect on all of our memories over the last four years.

We arrived as a young and free married couple- thinking we would only be spending a year here before returning to London but fell in love with life there. Four years later, we are leaving as our little family. I sometimes look at photos of when we first arrived (looking so relaxed and well-rested!) and want to warn her of what the next few years will hold- I want to tell her that by the time she leaves, her life will be changed forever (and to make the most of lazy brunches while she can!).

The first time I saw Leckhampton Hill was when I arrived for a job interview before moving to Cheltenham. I fell in love immediately- and felt so lucky that I got to look up at it every day at work after very different scenery in London. It became our favourite spot for a walk. (This photo was taken when we had just moved- so fresh faced!)

We are leaving Cheltenham with some really sad memories- especially in the last few months but overall I’ve loved living here. I found a school with amazing colleagues and pupils. We’ve made friends that we will be friends with for the rest of our lives. I became a mum- I’ve brought my baby boy home and watched him flourish here and I’ve scattered my baby girl’s ashes over the hills we can see from our bedroom window. It will always have a special place in our heart.

We had this painting of the view from Leckhampton Hill commissioned which will be in our bedroom at the new house. This is where we scattered Etta’s ashes.

I find comfort in the fact that Etta has been in our new house- even if it was only in the womb. No other house in Salisbury would have had that special link to her and so deep down I knew it could only ever have been this house. Next week, we are having a special memorial bench arrive for our garden bought with money kindly gifted by the charity Together for Short Lives. We will put it next to the sunflowers we are growing for Etta.

Planting sunflowers in Etta’s memory

And so we are moving forward with our lives but not moving on. We are leaving with empty arms but having had so many friends wrap their arms around us in our darkest times. We are leaving Etta’s special place behind with the knowledge she’ll be with us wherever we go. She’ll be with us in every chapter, in every home, in every memory. We are moving forward but we are never moving on.

Where Etta’s ashes are floating overlooking Cheltenham

Half a year and half a world away

This week marks six months since Etta was born. Time has been so warped by coronavirus that it feels like a lifetime ago. If she was still alive, it is a milestone that I definitely would have celebrated so feels only right that I still mark it even though she’s not here.

A few hours old 💕

So, what do I imagine she would be up to at 6 months old? It’s such a tricky one- it feels like I can imagine Etta at 6 months old without any heart defects or Etta who recovered quickly from surgery. She would have started sitting up on her own, throwing broccoli purée around the kitchen and moved from her bedside crib to her cot.

But had our beautiful Etta lived after that last surgery- 6 months would probably look very different. She may well be recovering from her next major heart surgery (the Glenn procedure). She might have still been tube fed or weaned early to help get extra calories into her. She would probably have reached her milestones slower because of her heart needing to work so hard and her extended hospital stays. She might not have been sitting up yet. And she certainly wouldn’t have been leaving the side of our bed for a long time! I sometimes wonder if Sam and I would ever have felt comfortable to move her into her own room. We might have still been sharing a room until she was an adult 🤣!

Me at 6 months old

So in all of my daydreams there are always the two parallel Ettas running side by side. The first Etta who healed and was home in 3 weeks (the best case scenario) and the Etta who was really sick but managed to pull through. I think their lives would have been quite different.

I love to imagine a toddler with blonde ringlets bossing around her big brother and having such loud tantrums I worry about her turning blue. But it all gets much fuzzier the further into the future I try and imagine. Maybe because Ezzie hasn’t got there yet so I have nothing to compare her to or maybe it’s just because the older I try and imagine her, the further away that is from anything I knew of her.

27 days will never be enough and it breaks my heart that I’ll never really know. There’s both a comfort and heartache in this speculation. I read an interesting blog post yesterday about quality of life for people with disabilities which was basically arguing about who had the right to determine what a good ‘quality of life’ is. The mother who had written the blog’s son had died after they suffered brain damage from a urea cycle disorder as a a baby. She found that once people found out he had suffered from brain damage, his death was often seen as a kindness because it was assumed he would have had a poor quality of life.

It’s a really hard topic and unfortunately parents are often having to judge what their child’s quality of life would be, often when their child is still in utero. On the afternoon Etta died, Etta’s surgeon came and said “I know it’s not a comfort now, but lots of these children go on to have really hard lives”. I wasn’t angry at him for saying that because I’m sure it is the truth. But it was also the truth that we would have rather had Etta in our lives whatever that would have looked like. The Little Hearts Matter (charity for single ventricle heart conditions like Etta) motto is ‘Half a heart, not half a life’. We would have worked so hard to make her life so full and whole. But I suppose there came a time in Etta’s life when I was close to saying ‘Enough now’. I’m glad that in the end the doctors made the decision and not us. Choosing to let your child die out of love for them is a bravery beyond comprehension. We only experienced a glimpse of that in stopping Etta’s life support.

As I think about Etta at 6 months old, there are so many possibilities for what her life could have looked like. I know there are circumstances in which she would have lived and flourished with a ‘fixed’ heart. There are circumstances in which she would have lived with complex medical needs (and hopefully still flourished). And of course there are more circumstances in which she would have died. I feel like as her mother, I should be the one to know my daughter inside out. But there are just too many unknowns. The only thing that is a certainty is that whatever the scenario she would have been so completely surrounded by love.

We love you and miss you more every day Etta Grace Libi. 💕🌻

Less than 12 hours old 🥰 (I have about 7 different photos of this first precious cuddle!)

Etta’s Cardiac Arrest

*** Trigger Warning *** This post details the day of Etta’s cardiac arrest and photographs from that day so don’t read on if that will be a bit much for you ❤️

Yesterday was a really heavy day. I spent most of the day crying or on the verge of crying or with a headache from crying so much. There were a lot of tears. So I thought maybe writing about this day might help.

13th December- the day before her cardiac arrest. We put her in Ezzie’s ‘going home’ outfit 💕

14th December 2019- I think of this day as when it all started going wrong and the beginning of the end. Etta’s death came as a shock to many because up until this point she had been recovering well from her surgery and we all very much thought the hardest and riskiest part was over. We would never see Etta awake again after this day, despite the huge amount of hope that we and her doctors had that she would pull through. So I will start at the beginning…

It was a Saturday and Etta had spent 9 days recovering from her first open heart surgery (making her aortic arch bigger and a DORV repair – using a patch to make a tunnel between the left ventricle and aorta). Usually, we would always go straight in to see Etta first thing in the morning because rounds typically started at 8 am. However, today we didn’t. My mum and dad were moving out of their Air BnB in Bristol and driving back to Salisbury for a few days so we went to help them pack up. It was the first time we hadn’t been there for Etta’s morning rounds because we knew we had the whole weekend ahead of us by her bedside because we wouldn’t need to split our time seeing Ezzie. We said goodbye to Ezzie and I went back to Paul’s House (emergency parent accommodation) to express milk before heading over to PICU. Sam went to meet his dad and brother who had come to visit.

I cried a lot as I was pumping milk that morning. I sat on my own in our room thinking how far away this was from what I expected my first few weeks with a second baby would be like. I was so tired of saying goodbye to Ezzie and not having my two babies together and felt incredible guilt for always feeling torn between them.

The last time we saw Etta before her cardiac arrest- doing well on her BPAP

I met Sam, Tom and Alan at the entrance to the hospital- still crying. I feel a bit of an idiot now for crying so much about saying goodbye to Ezzie, because a few minutes later this would pale into insignificance. As as we arrived onto PICU, we were quickly intercepted by Sophie (one of Etta’s regular nurses). She warned us that something was happening with Etta and there were lots of people around her bed space at the moment.

The NIC (nurse in charge) then came out to speak to us in the only private room we could find- the nurses’ meeting room. She explained that she was just about to call us when we walked into PICU- it was a bit of a coincidence that we had walked in just at that moment. She explained what had happened that morning- Etta had been absolutely fine on morning ward rounds but her nurse Lety had just called the doctors over because her heart arrythmias were getting more and more erratic and sometimes dropping down to 60 beats per minute (it should be 120-160). Her heart rate had been pretty irregular all week which is a common side effect of cardiac surgery because the central part of a heart which contain the messengers for electrical impulses in the heart have been tampered with in surgery and swelling after surgery can also damage it.

When the doctors arrived at Etta’s bed to take a closer look, her heart started dropping further to 40 bpm so they needed to start CPR quickly as she was going into cardiac arrest. The NIC asked if we wanted to come in so we could see what was happening because they could put seats for us nearby. At that moment, we both wanted to be with her but we were terrified about seeing her have CPR. I knew it would be an image we could never erase from our minds (I was right by the way). So I asked the nurse the only question that really mattered:

“Are we going to lose her?”

And the nurse simply replied “I don’t know, I can’t answer that.” This was enough for us- we wanted to be near Etta if these were to be her last moments. Sam’s dad and brother stayed in the meeting room while we went in. There were so many people around her- nurses and doctors administering adrenaline and a nurse giving her chest compressions. The PICU consultant came to tell us what had happened but told us she couldn’t speak for long (because she was still trying to keep Etta alive).

Sam asked if we should call our families- bearing in mind my parents and Ezzie had only left Bristol an hour before. What a difference an hour makes! I still remember the break in his voice as he phoned my mum to tell her that something had happened to Etta and they should come back. Luckily, Sam’s dad had also let the rest of Sam’s family know too. We needed to give everybody the chance to say goodbye to her if she wasn’t going to make it.

I just remember sitting with Sam about 2 metres away from our little girl and the thought “Please don’t die please don’t die please don’t die” running through my mind on repeat.

It was a well-oiled machine around her bed. At the time it was quite intimidating but with hindsight it was very impressive to watch all the staff knowing their different roles and working together. Within 45 minutes Etta seemed to have stabilised. Less and less people were around the bed although the crash trolley was still there just in case.

At this point, we were told that she was going to be put on ECMO (which stands for extracorporeal membrane oxygenation) or sometimes called ECLS which is a type of life support where the machine basically acts as your heart and lungs for you outside of your body. We’d been told about it before as very much the ‘last resort’ option if Etta was struggling to cope after her first heart surgery. Survival rates after being put on ECMO for cardiac patients is around 40%. Etta’s chances were possibly higher because she wasn’t completely reliant on this life support yet but it was more being used as a tool to rest her heart before further surgery on Monday. The plan was basically to remove the patch from her previous heart surgery and see if that helped relieve the pressure in her heart.

You can see an injection of adrenaline ready to go- in case it was needed again.

The intensive care unit was shut down as Etta was put onto ECMO which meant everybody except staff and patients had to leave. This would become a common theme in the next few days with Etta constantly kicking everybody out of PICU. We went into the quiet room with Tom and Alan, as our family started to arrive from different places. My mum and dad had brought Sam’s sister Kim back from Salisbury (leaving Ezzie with Uncle Doug) and my brother Sam and his wife Abi arrived. They hadn’t met Etta yet so I was sad that this was how they were going to see her for the first time. I felt thankful that Sam’s dad managed to meet her the night before.

Being in that ‘quiet room’ was hard. We’d seen other families in here over the last few weeks whenever it was bad news. Families gathering to hear progress or say goodbye. And I still couldn’t believe that we were now that family. The day before we’d been having our first cuddles now she didn’t have a breathing tube in and now suddenly we were crowded in this room while Etta was fighting for her life.

If you’re reading this then you’ll know that of course she didn’t die that day. We went back into PICU after an hour or so and Etta had been put onto ECMO. Our family members took it in turns to come and see her 2 at a time- they understood that this visit was precious and could now be their last.

We talked to a perfusionist about the ECMO machine- he had been stolen from the operating theatre because there were no trained ECMO nurses on shift free to monitor the machine. Nobody expected you to need to go onto it- Etta’s nurses were still telling us this the following week when we saw them again. I think it was a shock for everybody.

We took lots of photographs of the ECMO machine so we could show Etta when she was older.

ECMO is an amazing machine that really can save lives but it is not without its complications. The balance with ECMO is trying to get the correct viscosity of blood- too thin could cause too much bleeding but too thick could cause clots in the circuit which could be very dangerous and stop it from working. While on the ECMO life support, the risks are still high- infections, strokes and brain injury can happen.

The consultants were confident that Etta hadn’t had any prolonged time without oxygen to the brain during her cardiac arrest because they intervened so quickly with CPR. We’ll never actually know. However, because of the ECMO they started monitoring her cerebral activity because it can cause seizures. These would be hard to spot while she was sedated and on muscle relaxants but could be catastrophic if not picked up.

You know it wasn’t a happy ending- despite everybody’s best efforts, Etta still died. Etta had to have a post-mortem after her death which we have not yet received the results of. We are not expecting there to be any big surprises- congenital heart defects causing heart failure and cardiac arrest. My biggest question after her death was ‘Why did she have a cardiac arrest?’ It really felt like it came out of nowhere for us. Her first open heart surgery had a 85-90% success rate and I naively thought once we’d got through that then we would be out of the woods. But we were repeatedly told- ‘we are not out of the woods yet’.

I asked doctors from Bristol Children’s Hospital this question in a meeting after her death to discuss any findings from their internal review. They explained that after surgery, her atrium had dilated and because of her heart arrhythmia this made her very vulnerable to a cardiac arrest. I still don’t understand it all but I’m not a cardiologist so I don’t think I ever will. And as I keep reminding myself , it wouldn’t bring her back anyway. You can quite quickly end up in a dark place if you keep asking ‘what if’ and ‘why’.

Etta on ECMO- sadly it was impossible to hold Etta on ECMO because it was so sensitive.

This was the scariest day- only the day before we were talking about when she would be moving onto the ward and if we could make it home in time for Christmas or New Year. And then suddenly she was nearly gone in the space of a few minutes. We are so grateful for the nurses and doctors who saved her life that day. We saw the nurse who performed Etta’s chest compressions tirelessly on the day Etta died. We thanked her for saving Etta’s life and giving us extra time with our precious girl.

If she had died from her cardiac arrest, I don’t think I would have recovered from the shock or the guilt of not going in first thing to see her. The truth is if I knew she was going to die (not just that day but ever) then I would have spent even more time by her bedside. But there’s no point dwelling now or blaming ourselves.

We could have lost her in theatre during her first surgery. We could have lost her while we watched on a seat helpless a few metres away. We could have lost her that morning before we’d even had chance to arrive. But we had 9 more days to come to terms with how poorly our little girl really was and to spend time with her before the final goodbye. We lost quite a lot of her that day but we still ended the day with hope that she would get better. And today that hope is different but I still have hope that one day we’ll get to hold her in our arms again.

Too Much Information

I said in a previous post that after you end up in intensive care you become very knowledgable about lots of different medical jargon. I remember speaking to my uncle (a paediatrician at GOSH) after our first scan with Etta before we really knew what it was. He talked us through some possibilities and said that if the heart defects were confirmed then we would soon become experts on whatever she had. How right he was! The thirst for information was all-consuming- from survival rates to surgical procedures and from chances of genetic conditions to quality of life with different defects. There was so much research to be done.

Even once Etta arrived, the googling didn’t stop! I was constantly on my phone looking up different acronyms I’d seen on her notes and other things they had mentioned. And then she died and it felt so strange to not be googling anymore. We’d spent months preparing to be a ‘heart family’ and everything that would entail and then suddenly Etta had died and there was all this information and no place for it anymore.

A photo I took of Etta’s screen in NICU so I could google everything to my heart’s content

I remember crying about it to Sam and being confused. Why was I upset about not having to look up words or read obscure medical journals anymore? We unpicked it and realised that it came down to being experts on Etta. We didn’t have the expertise to fix her but we were the ones who knew her best. Suddenly that expertise was displaced and it didn’t matter anymore how much we knew because it wouldn’t bring her back. It felt a bit like me pumping breast milk around the clock- it felt like something tangible to show our love for our daughter and now it was pointless.

Just yesterday, I was looking up Etta’s conditions again. I don’t really know why but I suppose it helps me feel close to her and also I’m still a little bit in denial that I don’t need to know these things anymore and never will again. Sometimes I still find it hard to believe that she died because the outcome was so far from what we thought would happen. And I still worry that with everything we knew, there was something we could have said or done to save her.

So instead of this knowledge being completely useless, I thought I could share a little of what I’ve learnt over the past 10 months. Sadly, you may experience it yourself or have a friend/colleague/family member experience it at some point as 1 in 100 babies are born with a congenital heart defect (or CHD).

This week is Little Hearts Matter’s anniversary and awareness week- a charity who support families and children with a single ventricle heart condition. LHM was the first website we looked at when trying to work out what Etta’s diagnosis could be and they have continued to support us after Etta’s death. Etta was a little bit in between having 2 working ventricles and only 1- she had something called a DORV (double outlet right ventricle) which meant oxygen-poor blood was being pumped around the body. Also, the left side of her heart (ventricle and aorta) was smaller than it should be. Etta ended up going down the ‘single ventricular route’- using half her heart to pump blood around the body – but unfortunately her heart function was too poor for even this to work. I will continue to share some of their posts this week on Facebook and the betterforetta Instagram page.

A week sharing what life is like for children with single ventricle conditions, especially during the coronavirus pandemic. Their motto is ‘Half a heart, not half a life’.

Some Facts About CHD

1. CHD is the most common form of birth defect. A child with a heart condition is born every 2 hours in the UK. This means that every day 12 babies are diagnosed with a congenital heart defect in the UK. That’s 12 families that are suddenly catapulted into a terrifying journey they didn’t ever imagine they would be on. The most common type of defect is a ventricular septal defect or a VSD- which means there is a hole in the heart between the two ventricles. Etta had a VSD and also a smaller ASD (atrial septal defect- a hole between the atria). One of our cardiologists told us that up to 1 in 3 people actually have a hole in their heart but obviously in most cases it closes on its own or doesn’t cause symptoms.

2. Congenital heart defects are formed in the first 8 weeks of pregnancy. In most cases there is no real understanding why. The lovely foetal medicine staff told me there was nothing I did wrong but of course I still feel guilty for not taking folic acid every day and I’ve looked back at that time and wondered if I had an infection or something else that caused it. But the truth is we still need more research into the hows and the whys. The British Heart Foundation are currently funding research into the genetic and environmental factors that could affect CHD developing in pregnancy.

3. Only around 50% of babies are diagnosed with CHD antenatally (usually at their 20 week anomaly scan). This is probably the statistic that scares me most because it makes me worry about the health of future babies I haven’t met yet- family members and friend’s babies that might be more at risk because a heart defect wasn’t spotted before they were born. Things are improving in this regard- 10 years ago the stats were around 35% detection rate so things are moving in the right direction but maybe not quick enough. Tiny Tickers are a UK charity who are working hard to improve early detection for babies with serious heart conditions. Part of their work is training sonographers to help them pick up on heart defects in antenatal scans.

4. 6000 children are born with a critical or serious heart condition every year and around 1000 of those leave hospital and go home because their heart condition wasn’t picked up. I can’t imagine the shock of getting a diagnosis after you’ve brought your child home and thought they were healthy to then be bringing them back into hospital fighting for their life. But we did see it happen plenty in PICU. Etta’s antenatal diagnosis wasn’t quite right but it was pretty close- and meant she was in the right place for surgery when she was born.

5. Before the British Heart Foundation existed (in 1961) 8 out of 10 babies with CHD died before their first birthday but today 8 out of 10 children survive into adulthood. Of course this varies depending on the heart defect. Single ventricle conditions (where only one half of the heart is working effectively) have lower survival rates. The first surgery that is required for children with these conditions is often called the ‘Norwood procedure’ or a shunt and has a survival rate of 60-70%. This is the last surgery that Etta had at 25 days old after trying other open heart surgery options first.

Etta after her first open heart surgery at 10 days old

6. About 25% of babies with CHD are ‘critical’ forms of CHD where it is likely that they will need surgery in the first few months of life. We were expecting Etta to need surgery in the first few weeks of her life. It was a bit of a shock that at one point we were possibly going to be discharged because her heart was coping so well on it’s own. This would mean she could get a bit bigger before surgery to close her VSD at a few months old. However, the following day after this discussion she began to go into heart failure and needed extra help with breathing so open heart surgery was booked for Etta at 10 days old.

7. CHD can be treated but it can never be cured. It is a life-long condition that will need regular check ups and possibly medication and reintervention. Children with single ventricle conditions like Etta will have at least 3 open heart surgeries before they are 5 years old. Etta had more than 3 before she was even 1 month old. They are often described as palliative surgeries because they can only improve the quality of life. The longest survivors of hypoplastic left heart syndrome (a single ventricle heart condition) are now in their 20s and may need heart transplants. The future is still quite uncertain for children and adults living with half a heart.

8. CHD is often a hidden disability. Children with CHD can often struggle with everyday activities like feeding and exercising but it’s not always obvious that they have a disability. I remember being terrified at the prospect of taking Etta home and waiting for her to go into heart failure before her next surgery would be booked. Babies and children with heart defects can struggle to feed or put on weight, become exhausted by normal daily activities, struggle to stay warm and there is a whole host of other worries that might not be visible to others. I don’t really understand how Sam and I could have ever slept again and it’s hard to imagine living with that sort of anxiety for your child every day.

Signs of Heart Failure in an Infant

Due to many heart defects being undetected in pregnancy, many campaigns have been launched to help spot CHD. The ‘THINK HEART’ initiative was set up by Dr LaRovere at the Royal Brompton Hospital to help spread awareness to parents and health professionals about the signs of heart failure in a newborn.

Think HEART from the Tiny Tickers campaign

HEART RATE- Is your baby’s heart beating too fast or too slowly? It should be around 100-160 beats per minute.

ENERGY– Is your baby sleepy, quiet or floppy? Are they too tired to feed, or falling asleep during feeds?

APPEARANCE– Is your baby a pale, waxy, dusky, blue, purple, mottled or grey colour?

RESPIRATION- Is your baby breathing too fast or too slowly – it should normally be 40-60 breaths per minute?

TEMPERATURE– Is your baby persistently cold to touch – particularly their hands and feet?

This isn’t supposed to scare anybody, but I think it’s useful to know the signs to look out for. Etta looked really healthy when she was born and the only thing that stood out in her appearance to me was that her feet were quite cold and purpleish.

Today should have been a Little Hearts Matter memorial event and also we were planning to go to Bristol Cathedral for a memorial service for all of those at Bristol Children’s Hospital that have died this year. I’m really sad we can’t go and celebrate Etta’s life around other bereaved parents due to coronavirus but I hope this is a fitting way to remember her today. A little bit of her legacy is spreading information about CHD- even if it only helps one family spot the signs or feel a little bit less alone. ❤️

Etta looking completely perfect ❤️

Comparison is the Thief of Joy (and Grief…)

I’ve always liked that saying- it reminds me that no happiness can be found in comparing ourselves to others. I think it’s something that us ‘millennials’ are pretty terrible at- especially women. I’m not sure if it’s the rise in social media but it seems very easy to compare your house, job, body or parenting skills online and be left wanting.

I think I’m lucky that despite inevitable niggles along the way I’m content in my skin and very happy with my life. However, I think losing Etta has brought comparisons into my life even when I didn’t want them to.

I see other people’s pregnancy announcements and it’s a punch in the stomach before it turns into excitement for them. I see babies around Etta’s age and I feel sad that I don’t know what she would look like at 5 months old. I see Ezzie fawning over little babies and feel angry that his little sister was taken from him too soon. I feel like a terrible person that I want to shout “SOMETIMES BABIES DIE!” when I see a happy family of 4. Of course I have no idea what their journey was to get there- I don’t know if I should really be looking at a family of 5.

I try to acknowledge those bitter feelings and then just move on. The thing that helps me with jealousy is a comparison to myself as a first-time mum with Ezra. I was in blissful ignorance in my healthy straightforward pregnancy. I didn’t know the statistics around infertility, miscarriage, stillbirth or birth defects because they hadn’t affected me. And now when I see other mothers deep down I hope that they are blissfully ignorant too. Because although an awareness of these issues is important, you have to experience it to know it and I wouldn’t wish that pain on anyone even if I am a little green-eyed sometimes.

Loving life pregnant with Ezzie ❤️

Since Etta died I have filled my head and my heart with lots of other stories of babies and children gone too soon. It really hurts reading each grieving mother or father’s story because I hate the thought of anybody going through what we did. But naturally the comparisons start again and I feel jealous of the parents who got to take their babies home or made memories outside of the hospital walls. I feel sad that Etta died on a busy intensive care unit rather than in a private room or hospice like many others. And then I remind myself that I’m jealous of a child’s death and that feels ridiculous. Because I know how many people would look at us and feel exactly the same. We got to meet Etta alive which I know now is something that so many parents desperately wish for. And we got 27 precious days and hundreds of photos and videos. Let’s face it- your child dying is a time when you can’t afford any more joy to be stolen from you. I try and remind myself of that mantra- comparison is the thief of joy!

I was thinking this week as well about whether comparison is the thief of grief too. Because in comparisons with others, there’s also a feeling that my grief is less valid than someone else’s. Like there is a pecking order for grief and loss. How can I grieve what I’ve lost when a family lost their child at 10 years old? Surely that’s much worse. Or how can I be struggling when I’ve encountered a mother whose first child was stillborn and their second child died from SIDS at a couple of months old? It is hard to grieve your own losses when you are comparing your heartbreak to others. Comparisons can try to steal your grief too.

I think Sam and I have certainly felt that with our friends and family when talking about their lives. Elle Wright talks about becoming ‘the benchmark of shit’ in her book Ask Me His Name and this pretty much sums it up. As tragedy goes, losing a baby or child is up there. This leads to people saying ‘but of course it’s nothing compared to what you’ve gone through’ or ‘it could be much worse of course’. For lots of people we are that ‘much worse’ but I do worry that this is the sneaky thief comparison trying to devalue people’s grief again.

I don’t want my friends that have miscarried to say to me “It’s not the same as what you’ve been through but…” or family that are struggling to say “Why am I crying when I’ve not lost my daughter?” The thought that comparison to our situation makes people feel guilty about the depth of their suffering just makes me feel sad. It’s not like one person’s grief eclipses another or one person’s feelings matter more.

With coronavirus at the moment, this feels even more relevant. There are so many people saying ‘it could be worse’ and feeling like they can’t air their grievances or express their anxiety about the world. Without doubt, those that have lost loved ones and can’t hold funerals are really suffering right now. The tens of millions of pounds raised for the NHS and other charities shows how grateful we are for key workers’ sacrifices and how aware we are of other people’s awful situations. But things that aren’t life or death do still matter. Grieving the loss of your child’s last months at primary school , the loss of your livelihood or the loss of your life-as-you-know-it aren’t less valid just because somebody else is also grieving. I know that if we are still in lockdown on Etta’s 1st birthday and I can’t commemorate it the way I want, I would grieve that missed anniversary. Even though it wouldn’t ‘compare’ to the grief on the day we lost her.

After we’d been told there was nothing else that could be done on the 23rd December

I think comparison can give us some healthy perspective in life but I don’t think it should stop us from allowing ourselves to feel sad, anxious or any other emotion for that matter! Comparison can help us to appreciate what we have and cherish what might have gone unnoticed before. But I think if there’s any chance of it stealing joy or grief then we should lock it up and throw away the key!