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!

From the Mouths of Babes

It’s hard to find any joy when your baby or child is sick or dies. I remember it feeling so strange to laugh at the Gavin and Stacey Christmas special only a couple of days after she died. It felt like a betrayal to be smiling at anything. But in the hours, days, weeks and months after Etta died, there have been lots of things that have made us laugh. Mostly Ezra because being 2 years old is hilarious and a toddler’s worldview is quite ‘unique’. Our nieces have also brought us some great entertainment along the way. So this post is about all the children in our family and all the gems they have offered us! ❤️

Baby Shark

The much anticipated first meeting between siblings- Would the older child be jealous? Would they love and accept them straight away? Would they be able to say the baby’s name? Well, I needn’t have worried about any of that because Ezzie refused to accept that Etta was not ‘Baby Shark’. Pinkfong has a lot to answer for. And by some small miracle if you haven’t listened to Baby Shark yet… don’t. Who knows why Etta was ‘Baby Shark’? It might have been because she was in a ‘fish tank’ (incubator) or it might just have been because it was the baby he knew best. His strong willed refusal that she was called Etta, provided a much needed giggle for the other parents and NICU nurses too! My brother bought Etta a shark onesie for Christmas and I really wish we could have put her in it! But it’s in her memory box now and it’s a video I love to watch and show Ezra again and again.

The first meeting 💖💙

“Your baby died.”

There’s nothing like a child’s honesty for telling you how it is. As a primary school teacher, I feel like I’ve experienced many of these nuggets of honesty. Like the 7-year-old girl who said “You look like you’ve got a baby in your tummy” before I was even thinking about having a baby in my tummy. (It was just a figure-hugging skirt ok?!) Or the 5-year-old boy who saw the overweight family support worker walk into our classroom and shouted loudly “She’s a fat!” Not ‘she’s fat’ or ‘she’s a fatty’ but she’s a fat. Children do not mince their words.

So it was no surprise really that when I saw my 3-year-old niece for the first time after Etta, she wanted to tell me that my baby died. More than once. She was of course trying to make sense of it herself and her mummy told her that I didn’t need to be reminded of this fact. But really I think children have got it sussed when it comes to speaking to grieving parents. They don’t sugar coat it- they lay out the blunt facts. I wish I could speak openly like that. The first time I had to tell someone what happened, it was in a park surrounded by laughing children and I choked on the words and tears ran down my cheeks. But children acknowledge the facts and talk about death freely- I wish adults could speak to me like that, rather than there being a huge elephant in the room with the words ETTA DIED scrawled across it!

Far more awkward to not mention it!

Etta on the cross

When I think back to the days in Bristol after Etta died- they are bleak. I think of crying all day and being in agony as my milk dried up. I think of trying to force a smile for Ezra and for those still celebrating Christmas in the outside world while it felt like my world had ended. But there is one moment that brought genuine laughter and I hope it’s the one that will stick with me from those days, rather than the countless miserable ones.

We received a text from Sam’s brother with some pictures that our nieces had drawn for us and Etta. The first from our 6-year-old niece contained what you would expect- hearts and flowers and a lovely message.


But the card from our 4-year-old niece took a slightly different tack. Being the daughter of a vicar, she had related Etta’s death to the only other death she had learnt about: the crucifixion of Jesus Christ. And therefore, we received the shockingly macabre ‘Etta on a cross’ picture. At which point, Sam and I burst into laughter and I remember saying ‘Well it could be worse, at least she wasn’t crucified’. Nothing like a bit of crucifixion to set things into perspective. I will be forever grateful for that message as a glimmer of joy in such a dark time. I think it made us realise that we were still the Sam and Em who could laugh together. And of course a reminder that comfort and joy can be found in the unlikeliest of places!

The masterpiece itself

It was Etta!

We’ve tried as much as possible to keep speaking to Ezzie about ‘Baby Etta’. We have photos up around the house and on our phones to show him. I got sad one day when he could only remember she was called ‘Baby’ and not her name. (But at least it wasn’t Baby Shark!) I know it’s up to us to keep her memory alive for him because he was so young when he gained and lost his little sister. So it was a big surprise when last week some of Grandpa’s Easter chocolate went missing. Somebody in particular was looking very guilty… When we asked Ezzie what happened to Grandpa’s chocolate he answered very quickly “Etta ate it!”

Despite there being quite a big flaw in this plan, there was something very lovely about Ezzie blaming Etta for the cheeky thing he’d done. It felt a little bit like what life would have looked like if she was still here with us: the mischievous big brother blaming things on his little sister. I have a feeling it might carry on happening with Etta becoming like an imaginary friend. Most of his dolls are called Baby Etta now and although I think he’s confused about why his baby didn’t get to come home, I also think he doesn’t have any sad feelings when he thinks of Etta. Who could wish for anything more than only happy memories of a person?

‘Baby Etta’ at our tea party

I really wish that Etta could have grown up alongside all of our wonderful nieces and her brilliant brother. I feel sad that they’ll never be able to play hide and seek in a big group, squabble over toys or share Christmas together. But what have I learnt from these wonderful, funny and poignant little moments? That happiness is possible in grief, acknowledging Etta (even if it’s her death) is always better than ignoring she lived, things could definitely be much worse and Etta will always be part of our family no matter what. We’ll make sure that she’s never forgotten.

And I probably shouldn’t wear a tight skirt to work again…

Easter After Losing a Child: Suffering and Hope

Etta’s first outfit and her bunny 🌸🐰

I think it’s fair to say I’ve struggled with my faith after losing Etta and if I’m truly honest before that too. I was only reading the bible at a church service or when teaching a lesson/assembly at school and my prayers were somewhat formulaic (thank you, sorry, please). I could probably do a whole blog post on mine and Sam’s faith during Etta’s short life but needless to say that our biggest prayer wasn’t answered. At the moment we can’t fathom a reason for that. That’s been tough- both theologically and emotionally for us.

With that in mind, I thought I would focus on how the message of Easter has become more meaningful after Etta has died and brought up some strange emotions and thoughts too!

‘For God so loved the world that He gave His only begotten Son, that whoever believes in Him should not perish but have everlasting life.’

John 3:15

I must have heard and read that verse from John hundreds of times and yet for the first time I was thinking about the pain in that message. God’s pain in sending His only son to die. Mary’s pain at the foot of the cross watching her firstborn son being tortured. Jesus’s physical, emotional and spiritual pain on the cross. My own experiences certainly brought home the pain of Good Friday this year.

On Good Friday, the first strange thought I had was ‘Jesus didn’t have any morphine’- the pain is unimaginable. And I cried wondering how much pain and suffering Etta endured in her short life. I know there would have been some. I cried thinking of God’s decision to let His son die for the sake of others and I was reminded of how painful it was when we had to choose when the life support was stopped to end Etta’s life. The nod from the nurse to tell us ‘it is finished’. And I cried thinking not only of Jesus’s immense physical pain but of his emotional pain of being separated from His God and His father too.

‘My God, my God, why have you forsaken me?’

Matthew 27:46

I know that our daughter was held in our arms and surrounded by so much love when she died. She was treated with so much respect and tenderness by everyone around her. That couldn’t be further from Jesus’s experience and it brought home the huge sacrifice God made for us who didn’t even deserve it.

Although… then the next strange thought came up. I was a bit jealous of God. God knew that Jesus was going to be resurrected in a few days. Sadly, I knew that when we returned to the morgue the next day we weren’t going to find empty grave clothes. She was still swaddled in her blanket.

If I reflect on this jealousy, what it comes down to is that God knew without doubt that He would be reunited with his son again and that death had been defeated. Could I hand on heart say that I had that same faith? Would I see Etta again? Suddenly the idea of resurrection was seeming a lot less abstract.

‘O death, where is your victory?

O death, where is your sting?’

1 Corinthians 15:55-57

In the week before Etta died, I was really comforted by imagining her in her Granny’s arms in heaven. (Sam’s mum passed away from cancer 10 years ago). I know for some people heaven and angels are a comforting idea. There are a lot of platitudes banded around when somebody dies, especially when it’s a baby or child. “God needed another angel” or “Heaven lent them to Earth for a short time”. I’m not here to criticise what others might find comforting but for me that wasn’t enough. Fluffy sentimental quotes weren’t really going to cut it. My hope needed to be founded on something more solid than that.

Because death really does sting. Witnessing death certainly took away some of its power but the truth remains that we are still hurt deeply when it happens. However, it’s possible that death doesn’t need to be victorious. Of course the message of Easter Sunday is just that- Jesus had risen from the dead- he came back to life on Earth for a short while before finally returning to God in heaven. Death has been conquered. As a Christian, that certainly makes me less afraid of death and renewed a desire in me to really understand that message of hope and eternal life. Even if none of it is true (which I know many of you reading will think is the case) Etta is no longer in any pain and never will be again and she will never fear death. That’s enough for me too.

It can be all too easy to focus on Easter as only the Sunday- a celebration of new life with Easter eggs, joyful hymns and maybe a roast with family. However, now I feel like I have a new appreciation of the whole weekend and especially Easter Saturday. Those that loved Jesus would have been heartbroken and confused, unaware or unsure of the miraculous events that would follow. Easter Saturday might resonate with those who are currently suffering. It’s OK to dwell in our grief and think about the devastation of yesterday. It’s OK to dwell in our grief and consider today’s disappointments and anxieties. It’s OK to dwell in our grief and not even want to enter tomorrow’s narrative of new life. But that doesn’t take away the fact that tomorrow will happen. And with that comes a message of hope like no other.

So I will continue to pray… even though I’m not sure that prayer works.

I will continue to be thankful… even though I’m angry at what I don’t have.

I will continue to believe… even when life seems so fragile and uncertain.

I will continue to hope… because I trust in God’s love.

Happy Easter, Sad Easter, Hopeful Easter ✝️

You Are My Sunshine

🌻The flowers from Etta’s casket🌻

I woke up this morning feeling quite cheerful. I think that’s saying something as Ezzie decided 5.15 was an acceptable wake up time. But early mornings and night wake ups don’t upset me as much anymore because I keep thinking that I should have a 4 month old with me and she would definitely be keeping me up more than Ezra is!

It’s funny how a little bit of sunshine can make you feel a little bit more hopeful. A few weeks after Etta’s funeral, the 3 of us headed out to the Canary Islands for a last-minute holiday to get away from everything. I worried that we would feel just as broken-hearted but not at home with our friends and family. But actually there was something very calming about being able to sit with the warmth of the sunshine on our shoulders with none of the everyday stuff to think about. And we loved being able to walk outside without having to put Ezzie in layers and coats and wellies and a hat. I still cried a lot. Etta was all I thought about and yet I also have lovely memories of sitting in the sun with my boys.

A week ago, I got into bed that night and crumbled. “I’m not coping” I cried, as Sam held me tight. He quickly reminded me that I was coping- I was still here showing up for him and Ezzie. But it was a hopeless feeling of despair that stuck in my stomach and surrounded me for a day or two- always on the verge of crying. And as quickly as it arrived, it left and I felt like I could carry on. A little bit of sunshine was creeping through the darkness again.

Tired but happy

We had a chat a few nights ago about whether we could ever be 100% happy again after Etta died. Let’s just say we didn’t agree! I said at the time I’ll never be fully happy again because there will always be a part of me that is missing and that I long for. I felt content with that because I already know I can find joy in my life after Etta even if it’s not complete joy. On reflection, I suppose it comes down to whether her life can overshadow her death, rather than the other way round. We chose the poem ‘She is Gone’ by David Harkins for Etta’s funeral with that hope in mind.

You can shed tears that she is gone
Or you can smile because she has lived.

You can close your eyes and pray that she’ll come back
Or you can open your eyes and see all she’s left.

Your heart can be empty because you can’t see her
or you can be full of the love you shared.

You can turn your back on tomorrow and live yesterday
Or you can be happy for tomorrow because of yesterday.

You can remember her and only that she’s gone
Or you can cherish her memory and let it live on.

You can cry and close your mind, be empty and turn your back
Or you can do what she’d want: smile, open your eyes, love and go on.

Don’t get me wrong- I often shed tears and pray that Etta would come back to us. I wish more than anything that on this sunny day she was laying on a blanket in the garden gurgling away while being accosted by her big brother with toys and cuddles. I’ll never be fully happy because she died and yet everything in my life feels more full of joy because she lived. It’s a bit like being capped at 90% happy and 110% happy at the same time. So maybe that is 100% after all 🤷‍♀️ (Sorry Sam!) Perhaps the reality of grief is that the second line in each of those verses should be ‘and’ instead of ‘or’?

Within the baby loss community, children who are born before the baby who has died are referred to as ‘sunshine’ babies and babies born after as ‘rainbow’ babies- symbolising hope after a storm. Whilst Ezra certainly has been a ray of sunshine in the depths of grief, Etta is my sunshine too. Those that came to her funeral will know that I chose ‘You Are My Sunshine’ as the opening song as the casket was brought in. I played the Jasmine Thompson version to her and sang it to her when she was in her hospital cot while praying ‘please don’t take my sunshine away’. She was taken from us too soon but that doesn’t change the fact that she’s still my sunshine. And my storm. And my rainbow. She’s all of it and more.

I know the storms will come again but today I’ll enjoy turning my face towards the sun.

Life in Intensive Care

Well, what a year this week has been! I wasn’t too sure what I wanted to write about this week but with all the talk in the news about CPAP, ventilators and hospital beds, I settled on something I thought was pretty topical at the moment- our experience of intensive care. Etta started her life in NICU (neonatal intensive care) and ended it in PICU (paediatric intensive care) and spent 25 out of 27 days in intensive care (2 were spent in HDU- the high dependency unit on the cardiac ward).

It really saddens me that lots more people are going to be ending up in ICU over the next few weeks and months although hopefully not so many paediatric cases. I know that 25 days is not a long time compared to what lots of families have faced or unfortunately will face but here are a few things I learnt from our time there.

Etta on her way down the hill from NICU to PICU in special transportation

1. Washing your hands really can save lives. The first time we visited NICU was before Etta was born to try and prepare ourselves. You have to leave all coats and bags outside and then get buzzed inside. Then you enter each individual room- we went to look inside ITU 1 (6 cots for the most critical cases) as it was where Etta would be taken. You have to wash your hands by the sink whenever you enter the room and there is sanitiser too. Sam was asked to take his hoody off straight away which I thought seemed a bit overkill at the time but now I get it. In NICU especially, any germs can be life-threatening for these very sick or very premature babies. Soon enough, we were those anxious parents sitting by our baby’s incubator. We then had to take off watches/jewellery and wipe down our phones too. But infections (and viruses as we now know too well) can be deadly and especially so for those in intensive care.

2. You become an expert on a very specific set of medical jargon very quickly. Sam and I were already very aware of the words to describe the heart’s anatomy and Etta’s congenital heart defects (VSD, ASD, coarctation of the aorta, hypoplastic left arch to name but a few) but in intensive care you are also thrown into a world of lots of different machines, acronyms and tests. Suddenly, you can’t help but read all the numbers on the machines and listen into all conversations at your bed space. ‘What was her lactate reading?’, ‘We’ve needed to put her on CPAP’, ‘What was her CRP level?’ It’s pretty relentless. You want to ingest all the possible information about your loved one in case you can help them in anyway. The amazing nurses always took the time to explain every machine and wire to us and answered all our questions. This understanding really helped us feel less anxious- a tiny sense of control in a situation that was very much out of our hands.

Only one of the photos showing quite how many machines were needed to monitor and keep Etta alive in PICU

3. The camaraderie is like no other I’ve experienced. In a time where parents are living their worst nightmare, smiles are still given freely to others. The parent’s room is where parents can sit down and have a break or anxiously wait if their child is in surgery or the unit is closed for an emergency. You are discussing your worst fears with people you might not even know the names of (although you’ll almost certainly know the name of their child). In PICU, families tended to come and go much more quickly, whilst in NICU, lots of babies stay for weeks or months as they grow bigger. In NICU, the pumping room felt like the eye of a storm- a calm place where you were forced to take a break every few hours and pump breast milk. I will always be very grateful for the kind mums in that room who told me NICU would seem less strange soon, that my milk would come in any day now and how to work the industrial grade breast pump that I was clueless about! It really did feel like a club that no one wanted to be part of but a sisterhood nonetheless. I feel sad that I’ll never know whether all the mums I met made it home safely with their babies and children.

4. Things can change in a matter of minutes, hours or days. I remember the first time we met a family who had been told their child probably wouldn’t survive the night. It was a terrifying prospect- being so close to the edge of death. And then it happened again… and again. A friend I made in NICU, whose baby was quite stable, I met again in PICU a few weeks later because her baby caught an infection and was told she might not make it. And then eventually of course it was us in this touch and go situation. What I realised is that when a baby or child is in intensive care things can go downhill very quickly. The upside to this is that things can get better really quickly too. A week before Etta died, we were called into the ‘quiet room’ to be told that Etta’s life support wasn’t working and that she wouldn’t make it through the night. Then a few hours later, her life support was stable and we were urged to go home and get some rest- she wouldn’t be going anywhere that night. I think you realise quite quickly that life is very fragile in those 4 walls.

Etta was still on the BPAP (breathing support) in this photo (having a mask break) but doing well. Less than 24 hours later she suffered a cardiac arrest that she never recovered from.

5. There’s always someone that is doing better and there is always someone that is doing worse (and it’s all pretty terrible). Life in NICU and PICU was completely humbling. I truly wish I never had to go there but I did and it really opened up to my eyes to the fact we were not unique in having a poorly child. I lost count of the huge range of conditions, illnesses, congenital defects and infections that had brought each child into intensive care- from sepsis to oesophageal atresia and from epilepsy to spinal muscular atrophy. It seems strange now to say that on some days I felt completely lucky that Etta ‘only’ had a heart condition that could be fixed with surgery and we would get to take her home relatively healthy. We met families whose children had lifelong disabilities so would be in and out of PICU throughout their life or had life-limiting conditions which meant they would soon die in hospice care.

I also felt incredibly lucky when families were blue lighted in with their baby’s life hanging by a thread while Etta was stable in her cot and recovering from her planned surgery. And on the other side of the fence, it’s true that I felt jealous too when many families were able to move onto the wards, back to local hospitals or even better- home. We saw lots of babies come and go with RSV and bronchitis and I really wish that was all Etta had to deal with. But the truth is if your child is in intensive care for days, weeks or months- it’s all horrendous and I really wish no one had to go through it.

A few times we were that family who were doing worse. Screens were pulled round (that’s when you know it’s serious), extended family members were taking it in turns to spend time with Etta and there were many sympathetic looks from parents walking past, thanking god it wasn’t their child today. There is nothing like intensive care to make you realise how precious life really is- it’s a platitude but it’s also the truth.

Etta modelling CPAP (breathing support) beautifully and looking like an old granny going synchronised swimming 🥰

6. The NHS is amazing. We know this already- of course we do. That’s why millions of people stood on their doorsteps to clap this week. But I think until they’ve saved you or a family member’s life you don’t realise quite how lucky we are in England. In Etta’s short life she was looked after by: cardiologists, obstetricians, midwives, intensivists, paediatricians, NICU and PICU nurses, cardiac nurses, physiotherapists, dieticians, pharmacists, maternity care assistants, health care assistants, sonographers, radiographers, anaesthetists, perfusionists, NEST drivers, cardiac surgeons, porters and I’m sure even more that I wasn’t aware of. She had incredible care by incredible staff- and we didn’t even pay a penny for it. It was hard to hear when people were complaining about the staff or not being able to come into PICU when a procedure was going on and lots of other little grumbles. They truly went above and beyond to try and save our little girl and we know that her nurses and doctors in particular were really hurting alongside us when they couldn’t. I know that Etta’s care would have cost tens of thousands of pounds but really the tenderness that was shown to her and our family by all of the NHS was truly priceless. We will never be able to repay them.

Always treating Etta with love and care ❤️

I wish that nobody had to go through having a loved one in intensive care. But for those that do I hope that they can at least come out of the other side with a new appreciation for life, the NHS or each other.