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.

Mother’s Day and Milestones

This is a strange Mother’s Day for us all. Lots of mothers, grandmothers and children across the globe can’t be together today because of coronavirus. So maybe it will make this first Mother’s Day for me after Etta died a little easier to bear. I won’t be seeing all the afternoon teas and pub lunches or spa days all over social media and wondering whether that’s something Etta and I would have done as she grew older. But I’d be naive to think an entire day dedicated to being a mum isn’t going to sting a bit.

I know I’m not unique in this; there are so many people who will find this day really hard for lots of different reasons. But I was totally ignorant to this pain before and now I hope I can tread a little more carefully for others. Not just a ‘thinking of everybody that finds today difficult’ type post on Facebook but an actual checking in on people I know might be finding today tough.

When Sam asked how I wanted to celebrate today (way before the world was a scene out of a zombie film) I wasn’t too sure. Maybe a walk somewhere special? Maybe some sunflowers (the flowers we had at her funeral)? I think really all I desperately want is to feel as much Etta’s mummy today as I do Ezra’s and that’s really hard when she’s not here in my arms. I’m longing for any sort of connection to my daughter when I can’t physically hold her- it’s very easy to forget that you’re a mum of 2 when the world only sees 1 child.

A couple of weeks ago, I was called by a secretary at the hospital and they asked to speak to Etta’s Mum. They wanted to update her GP records because it said that she was no longer under our GP’s care. Cue a really awkward moment where I had to explain that Etta had died. I cried a lot after she hung up because I’m still not used to saying those words out loud but what I realised afterwards was how lovely it was to be called Etta’s Mum. It had been a while. When we were in hospital, we were Etta’s Mum and Dad all day every day. I’m Ezra’s Mum every time I pick him up from nursery. Apart from with friends and family, I don’t think I’ll ever be called Etta’s Mum again and that really hurts.

We had a lot of milestones and celebrations in the first month after she died. Christmas, NYE, my birthday, Ezzie’s birthday and lots of aunties and uncles birthdays too. Milestones are hard because they are the days of the year that you’ve pictured in your head before the event and so to have that day without your most special people in it doesn’t feel right. And they’re supposed to be happy occasions so you put on a brave face. Christmas 2019 felt like a terrible terrible nightmare. We were really hoping we would be home for Christmas but we never expected we would be home without our little girl.

Celebrations are hard but actually the every days are sometimes harder. I listened to something recently from another mum who lost her baby saying ‘Some days are an Aneurin [her son]- heavy day and they are painful but nice and some days are just really fucking hard’ (@elenalucie). And I feel like that sums it up completely. Sometimes I feel like I need to take an ‘Etta day’ where I look through photos and the scrapbook I made of her life and face the grief head on. It’s painful but nice. But the times where I feel like I’ve had the air knocked from my lungs aren’t on Etta days or the milestone days- they are the unexpected days.

Two lots of flowers!

So today was very much a painful but nice day. Sam got Etta’s name engraved on the British Heart Foundation’s Heart of Steel, got lots of thoughtful gifts and even accidentally got 2 bouquets of flowers delivered (although I like to think Etta had a hand in that- 1 for each of my children!!) He did all he could to make today a celebration. And of course, I’ve still got my Mum to be thankful for- I’ve never loved and appreciated her more than the weeks she had to act as Mummy to Ezzie so Sam and I could look after Etta in hospital. Yet again I’m ending a difficult day feeling beyond lucky to have my mum, one healthy child still with me and a heart full of love for the one who isn’t.

This morning, we scattered Etta’s ashes on the hilltop we can see from our house. It felt like the perfect day to do it. It’s Mother’s Day, the sun is shining and let’s face it we may soon be in lockdown and I don’t really want her ashes sitting in a cardboard box on our desk forever. We blew some bubbles, we threw some confetti, we lay some flowers and we even lit a sparkler. And now the last physical part of her is free to float wherever it fancies. It was a little bit sad but it was mostly just another nice way to say goodbye and think of her.

Blowing bubbles

I was worried about not feeling like Etta’s Mum today and struggling to feel a connection to her but it couldn’t be further from the truth. As long as I’m living, my baby she’ll be. And I’ll keep remembering her on the milestone days and all the other days in between.

Scattering her ashes

Real Men Don’t Cry

When Emily started this blog I was really pleased that she had a way to express herself and explain her thoughts and feelings to everyone and anyone that cared. I didn’t for a minute think that I’d ever write down my own thoughts and feelings. I’m comfortable talking about my emotions (although I haven’t always been- we’ll come to that) but writing them down is a bit ‘Gossip Girl’ for me.

Well, here I am, baring all.

When we finally got to meet our girl

My first emotion immediately after Etta’s diagnosis was anger. For anyone that knows me at all, you’ll know that this is pretty much my default emotional state. I’m generally quite an angry person. I don’t know why. Granted, I’ve had a few shitty things happen to me, but on the balance of things I had a very happy childhood with a loving family, and my adult life is much the same, surrounded by love. Nevertheless, I’m always a little bit angry. This was different though, I wasn’t angry at anyone, I was just angry. I was angry that Emily was sad (not that she was sad and shouldn’t be but rather that something had happened to make her sad) and I was angry that this situation had happened to us.

I wasn’t upset. Not yet.

When we got home the anger subsided and the feeling of nothingness began. Emily’s parents were looking after Ezzie whilst we went for the scan, so when we came home and after a short explanation of the devastating news that we’d just been given, I left Em with them to have a cry and a cuddle. I went outside and sat in the garden. I sat for quite a while and nothing happened. I wasn’t angry anymore, I didn’t cry, I didn’t really think about anything at all for a good twenty minutes. I just sat there. I realise now that I was in total shock and utter disbelief that this could happen to us.

I decided that I needed to tell my family. Up until this point they had no idea that there was an issue- it was just another 20 week scan and as the proud uncle of seven nieces, this wasn’t a big deal for us. We’d kind of been there, done that, got the t-shirt. I can’t remember what order I did it in, but I phoned my Dad, my brother and my sister to tell them the news. I remember thinking to myself, keep it brief, keep it factual, keep emotions out of this phone call, just get it done. I don’t know whether I managed that, I don’t really remember the words I said. I just remember the tightening in my chest, a weight on my shoulders and a deep urge to cry. But I didn’t cry.

As you may have read in Emily’s previous post about Etta’s diagnosis, we had to wait a few days between being told there was probably a serious problem and having a proper diagnosis. Those few days are a total blur and I can’t remember for the life of me what we did to pass what seemed like twenty years between the two appointments. We spoke a lot, we got a few important things clear in our minds and we tried to distract ourselves. It didn’t work. I had given my family strict instructions to contact me only by text, I knew I’d cry if I spoke to them and I wasn’t ready for that. I’m not sure why I didn’t want to cry- Em will be the first to tell you I’m very comfortable crying. An episode of first dates- cry. Big Hero 6- cry. Watching Emily graduate- cry. Birth of Ezra- MEGA CRY.

Most of you reading this will know that I lost my best mate, my mum and a good pal from my gap year all within about 14 months (my freshers year at university). At the time, through a combination of denial, starting a new life with new friends at university and trying to seem like a big, tough man (real men don’t cry, remember), I pretended that everything was ok and got on with it. I think I may have even convinced myself that that was true. It wasn’t until I met Emily that I realised that I was just a child when these bad things happened to me and I certainly wasn’t emotionally equipped to deal with them. Through my now nearly ten years with Emily, becoming a husband and a father, I have learnt what it really means to be a man. When I say man, I’m not referring to my gender but rather my ‘coming of age’ moment where I stopped being a boy and became emotionally stable enough to cope with the shit that life sometimes throws at you. My point is, the reason for my not crying wasn’t deliberate and it wasn’t an attempt to conceal what I really felt about the situation. I have no idea why I didn’t want to, or perhaps couldn’t, cry.

When the time came for the follow up appointment, we already knew everything about the possible heart conditions that Etta might have had, ranging from really shit to quite shit. Nevertheless, there was still a fair bit of optimism that this was all a horrible mistake and that we would find out everything was fine. Our foetal medical consultant, Mr H, didn’t take long to confirm our worst fears and he told us in no uncertain terms that there was a considerable problem with Etta’s heart. Em cried a lot- she had been clinging on to the last bit of hope that we had. I still didn’t- I think having witnessed bad news like this before, I was preparing for the worst whilst hoping for the best. We went through the formalities with Mr H and his team, we talked about the options and the next steps. As you can imagine, it was pretty rough. Emily asked Mr H if he could tell us the sex of our baby as we hadn’t been able to find out at the first scan. A few very experienced movements of the ultrasound later, Mr H announced that we were having a little girl. Finally, I cried. I wept and wept and wept. I let out the four days of stress, upset, anger and confusion in one snotty bawl and it felt good.

The final few months of Em’s pregnancy, Etta’s short life and the difficult times since her death have been filled with tears; I’m crying right now as I write this blog. Although it’s completely different, it’s only natural that I compare the loss of Etta to the loss of my friends and of my dear old Mum. One huge thing that I’ve learned is that you can do all sorts of things to try to stop yourself feeling (and I probably did them all when Mum died) but eventually those feelings will catch up with you and it will be a hell of a lot worse in the long run. Em and I have tried to let our minds and bodies tell us how to feel, and to let it happen when those feelings come. Some days I’m happy, and that’s ok. Some days I’m sad, and that’s ok. Some days I don’t feel anything, and that’s ok. It’s all ok, just let it be. That’s how we’ve been trying to live our lives since Etta left us and I’d like to think that we’re doing ok. There’s one thing I know for sure; I’m not angry nearly as often as I was. I prefer it like this.

XOXO- Gossip Girl

Proud Dad

Self-isolating, potty training and grief

I wasn’t expecting to be writing again so soon but with the current plan to implement social distancing and self-isolation as much as possible, there doesn’t seem much else to do! This isn’t meant to be a ‘woe is me’ post at all- there’s enough misery and anxiety around at the moment!

Last week, I attempted to potty train Ezra for 3 days. That is seriously how long I lasted. By day 3 of staying inside the house and staring at Ezra’s willy (so I could put him straight on the potty if he even dribbled) I had mopped up a lot of fluids and I was a crying mess! Poor Sam got the brunt of it as I was snapping and tearing my hair out. Now, I understand that potty training can be stressful- you are literally spending every minute fixated on poo and wee and getting them in a pot- but I’m not sure the lack of success warranted such a nervous breakdown from me. Sam said “you shouldn’t be getting so stressed out by potty training” and actually I had to agree with him. When I really thought about it, this wasn’t about potty training (although saying “Wee goes in the potty, not on the floor!” for the 18th time is enough to send anyone insane). This was really about being stuck in the house.

Potty in front of the TV!

I hadn’t realised how important making plans with others, having little things to look forward to and most importantly fresh air was for helping me cope with daily life without Etta. When she first died I remember channelling a quote from About Time when the Mum loses her husband.

I am so uninterested in a life without Etta.

I didn’t want to die but I didn’t want to live in a world without her. But I think as little as a month after her death, I started thinking I need to fill the days somehow and do anything possible to try and participate in life again- for Ezzie, for Sam and for myself. So I started meeting with friends more, booking a holiday, going on fun day trips as a family of 3. Sam and I often say we are just trying to fill the days until… Well we’re not sure what 🤷‍♀️ But I suppose we are trying to fill our time until we feel a little more healed.

Another day- another day trip!

Once I realised what it was doing to my mental health, potty training was no more! No amount of poo in a nappy/ carpet is worth that river of tears.

So what about now we have no choice but to distance ourselves from others? How am I going to stop myself drowning in my grief? Well I think the first thing that is different to last week is there is already an amazing sense of camaraderie- both online and in real life. People are suddenly becoming more neighbourly again and checking in on each other which actually gives me a sense of hope that the world is still fundamentally a good place, despite all the shit that is in it. I’d like to think it’s that, rather than I selfishly enjoy other people suffering along with me!

Also, I know how lucky we are to be young and healthy. If we get Coronavirus, we will no doubt bounce back (even if it means trying to look after a toddler when we are both bed bound 😱) If Etta was still alive, she would be one of the most vulnerable. I would be terrified and we would all have been self-isolating for weeks already. My heart aches for those who have vulnerable family members and are anxiously trying to keep them safe.

Safe from the outside in her incubator ❤️

So just another way Etta has made me into a better person. Without her, I’d probably be whingeing about having to entertain a 2 year old at home and having my theatre outings cancelled. Maybe I’d even think about ignoring government advice and take Ezzie out to a soft play to save my sanity. (Although I’d like to think not!) But I feel even more strongly now about protecting those who couldn’t bounce back. For some people this is life and death. We are going to have so much to deal with once this is over but here’s hoping that people can pull together.

And thirdly, I spent £40 on amazon prime on craft stuff this morning- that’s got to entertain Ezzie for at least 2 minutes right?!?!

Welcome to the world Etta Grace Libi!

Every pregnant woman will tell you that the last few weeks of pregnancy drag- especially if you are overdue! I can add especially if you are waiting for a NICU cot to become available and you are waiting to embark on what will be the scariest time of your life!

I was due to be induced in Bristol on the 20th November at 38 weeks. However, our cardiac nurse did warn us we were likely to be bumped a day or 2 depending on space in the delivery suite or NICU. Of course- no sleep was had the night before we were due to go in. And then the phone call came that it wouldn’t be today- and repeat Thursday repeat Friday until finally on the 23rd it was all systems go!! The waiting was honestly horrendous. Just a weird no-man’s land. Luckily my brother, mum and dad were around to lighten the mood and play with Ezzie.

We arrived at St.Michaels and were given a tour around the maternity ward and induction rooms- it was very slick and we were so well looked after (the common theme for us it must be said). I’m not going to lie but I was feeling pretty cocky! I’d been induced before with Ezzie (leaking waters at 40 weeks) and it went super smoothly. I just had the pessary and my waters broken and that was enough. I expected it would be the same again… I was wrong!!

Chilling in my giant room! No contractions… as you can tell by the smile!

So many a pessary over the next 36 hours and not a sign of contractions but finally a junior doctor thought my waters were ready to be broken so then was the long wait for the delivery suite! We were warned it could be over 24 hours 😬😬😬 but actually for me it was the following morning. So Monday (25th) mid morning we headed down to the delivery suite- baby Etta was well on her way!

After a freak out that she might actually be breech (I was adamant she was head down) we had our 1000th ultrasound to check her position and we were good to go. Until the lovely midwife actually took a good look inside and basically said she couldn’t break my waters. My cervix was not a labouring cervix! The junior doctor should have gone for an extra pessary as it turns out but instead of returning to the maternity ward I was like nope- do what you’ve got to do and break these waters! The poor midwife had such a tricky job- she said it was the hardest ARM (artificial rupture of membranes) she’s ever had to do and that I was what they would call very ‘tolerant’. She really had to rummage that knitting needle. But for the sake of any squeamish people reading we’ll move on. My waters were broken at 12 pm and we waited.

I was so so hoping that would be enough to get stuff moving. I’d done a hypnobirthing course- I was chilled watching First Dates, I was bouncing on the ball, I had my aromatherapy on the go, I was dancing to a lot of Lizzo. Really what more could I do to get that oxytocin working? But alas- nothing. So the artificial oxytocin drip went in (this meant no more food 😭) and I was then attached to a stupid pole. My hand swelled up because the cannula was huge and not quite in the right place (a student paramedic put it in and I’m not sure it was the best job 😬) I did not enjoy the drip. But I really shouldn’t complain because Etta had countless drips and lines and was a trooper. She was much braver than me.

So overjoyed to be on the drip… 🙄

Anyway the contractions started- it was all manageable with some deep breathing. I was determined I didn’t want too much pain relief because I didn’t want to increase the chance of intervention and therefore a longer recovery. I wanted to be fully in control of my pushing for the same reason. Basically I was trying all that was possible to make sure it was the safest birth for Etta and would allow me to be up and walking about as soon as possible so I could go visit Etta on NICU and go see Ezzie (staying at an Air B n B nearby with my Mum and Dad).

With that in mind I waited until I was 5 cm to get on the gas and air. I needed to make that stuff last! But THE CONTRACTIONS WERE SO MUCH WORSE THAN WITH EZRA! I imagine it was probably the drip- I was on the highest dose so they were coming thick and fast. I think about 11 pm my pulse was too high so they put me on fluids as well- although she thought it was probably just the pain. And about 11.30- I was incontrollably shaking. That’s when my midwife told me to take some oramorph and I asked for a vaginal examination. I’m not sure what would have happened if I was only 6cm… I was 8 cm and she thought the shakes were probably part of the ‘transition’ – getting ready to push. She was right because about 15 mins later I was pushing. The oramorph didn’t even touch the sides!

NICU were called and Etta’s NICU nurse and doctor came into the room just in case she was poorly on delivery. I really wanted to be mobile for delivery or upright but I was shaking so much the only thing I could do was lie on a bed. Luckily, it was still OK. It was very close to midnight and we were hoping she would be born on my brother’s birthday (25th) In fact Sam was counting down the minutes while I pushed… always helpful! But 16 minutes of pushing later and she was here- 7 lb 8 oz of perfection at 1 minute past midnight on the 26th. I just remember holding her to my chest and saying “Hello beautiful girl!” over and over again. She was here and she was safe and the first hurdle was over!

“Hello beautiful girl- you are so loved!”

We got lots of snuggles and pictures and then she was taken up to NICU to get her settled in her incubator. That gave me chance to have a bath and be milked by the midwife for a bit of colostrum. And of course tea and toast. (I didn’t get toast after giving birth to Ezzie and I feel robbed). I feel like the lack of epidural paid off because no tears or stitches- hooray! And I really did recover very quickly.

Very proud daddy!

I then got wheeled up to see Etta in NICU and she was gorgeous! After that I went up to the maternity ward for some sleep- but sleep never happens after you’ve had a baby. I was sharing a room with a mum who was evidently part warthog and I was too excited about Etta finally being here!

A couple of hours after she was born. All settled and her line already in her umbilical cord for drugs. She had the dummy a lot because she was hungry but not allowed to feed due to her coarctation.

It’s sometimes easy to forget her birth because it feels overshadowed by her death. And sometimes it’s nice to talk about her birth story like I’m just another mum with a newborn who is still here. I feel very grateful that I’ve had 2 stress- free natural births. I’d be lying if I said it wasn’t painful but I got the birth I wanted: Etta was happy and healthy throughout and I recovered quickly so I could spend all the time with my children. What more could I have asked for? ❤️

Etta’s Diagnosis

One of Etta’s many scan photos!

So where does Etta’s heart journey begin?

I think it’s fair to say our lives changed forever on July 11th 2019. I feel very lucky to have had a really smooth pregnancy with Ezra and because of this I went into our 20 week scan with baby number 2- as I think most do- looking forward to finding out if we were expecting a baby boy or girl. I hadn’t really expected anything but a healthy baby.

The sonographer was taking a while to do all the checks but at this point I wasn’t worried because I know from experience that getting those wriggly babies into the right positions is tricky! After a while, she said “I’m really sorry but I’ve been looking for a long time now and I think there’s something wrong with your baby’s heart.” She explained she was struggling to see the 4 clear chambers of the heart. She said that it could still be positional (baby not in the right place to get a clear view) but we would need a referral to fetal medicine for a scan with a consultant.

Now of course it could have been positional but with Ezzie they couldn’t get the images they needed to they invited us back the following week with a sonographer to try again (and still couldn’t get him in the right position) so the fact we were referred seemed to me very much like there was something! We asked what the gender was in that scan and the sonographer said she wasn’t sure. Part of me now wonders if she was trying to protect us a little bit from thinking of Etta as our little girl.

I remember getting home that day to where my Mum and Dad were looking after Ezzie and just crying as I hugged my dad saying “They think something is wrong with the heart”. We were scared and we were in shock and we knew we had what would feel like a lifetime to wait until we could be sure. The NHS aim to see you within 3 working days but because we were seen on a Thursday afternoon our next appointment wasn’t until the following Tuesday- cue lots of anxious googling.

That was the first time we stumbled across Little Hearts Matter- which gave lots of information on single ventricle conditions (or half a heart). We were now thinking that our baby (still didn’t know it was a girl!) might have a condition called Hypoplastic Left Heart Syndrome because of what the sonographer saw- or didn’t see. Healthy hearts have 4 chambers- 2 atria and 2 ventricles but maybe our baby didn’t have all 4 fully grown? This condition would mean a lot of high risk surgery and potentially a heart transplant or many couples choose to terminate the pregnancy for medical reasons. If our baby survived they would still be really sick for the rest of their life. We spent all weekend trying to prepare ourselves for this new possibility.

The following Tuesday came along and we met our fetal medicine consultant Mr H and walked into a room full of people (We now know only too well that lots of people = not good news) There was a midwife and a nurse and an antenatal screening midwife all in there to support us. Mr H told us what we already knew- there’s something seriously wrong with your baby’s heart and what we didn’t- it was a little girl! The left side of her heart did indeed seem too small. We were run through the options for what we could do next-

  • Be referred to St Michael’s in Bristol for an in-depth ultrasound scan with a fetal cardiologist
  • Undertake more antenatal screening tests like amniocentesis to rule in/out any genetic disorders
  • Terminate the pregnancy

We decided to try and get a clearer picture from St.Michael’s of what we were dealing with and were very lucky to be given a scan the next day. This was in my last week of school in Summer term and I was supposed to be going on holiday to Spain with my gal pals so it was a completely surreal and hectic time.

We went through to the fetal medicine unit at St Michael’s and had another scan and afterwards were taken to a tiny room for a debrief with our cardiac liaison nurse and fetal cardiologist Dr C. We were told that yes- Ettas’s left side of the heart was small but they didn’t think she had hypoplastic left heart syndrome (HLHS) but actually had something called coarctation of the aorta (where the aorta narrows so much the blood can’t flow properly to the rest of the body) and a VSD (a hole in the heart between 2 ventricles). If this was the case then the survival rates and quality of life would be excellent. It sounds strange to be thrilled about your child’s heart defects but we were. It meant that, despite annual cardiology checks, Etta would likely have a very healthy normal life.

However, we were also told that although the left side of her heart was adequate at 20 weeks- it might stop growing which would mean by the time Etta was 40 weeks it would be too small to function. We would have to wait and see at the next scan whether this was happening. This was really hard. We could do nothing but wait and hope our baby girl’s heart would grow. It’s so strange to feel your baby kicking away inside of you and there’s nothing you can do to help it survive but wait and pray. That’s what we did.

We came back to St Michael’s 5 weeks later and we were so happy to find that her diagnosis hadn’t changed! The left side of her heart was still growing and we made a plan to deliver the baby in Bristol so Etta could be transferred to the NICU and started on a drug called prostin right away- this would keep her heart acting as if she was still a foetus and keep a duct open to allow blood to flow round her body.

Our 32 week scan was the ‘biggy’ as we called it. These would be the best images of her heart they could get before the birth and we would also be given a tour around NICU at St Michael’s and the cardiac ward and PICU at Bristol Children’s Hospital. The scan showed that she was developing well- it was likely she would need open heart surgery after she was born but as Sam kept asking (!) she could be an elite sportswoman when she grew up- her long term prognosis was good. We were booked into fetal medicine at Bristol- told that Etta’s heart wasn’t that complex (hooray!) and had our tours. NICU felt very serious and quiet but that makes sense with the tiny tiny and very sick babies that lived there, whilst PICU felt noisy and more relaxed. It was hard to imagine that the baby in my tummy would be in one of those cots soon enough. But only 6 weeks later she was!

I didn’t take any bump pictures in this pregnancy- I think partly classic baby number 2 and partly anxiety about it all. But now I wish I had some! This was the day before I was due to be induced at Bristol.

I sometimes wonder what would have happened if Etta wasn’t diagnosed at her 20 week scan. Would the doctors have picked up on a heart murmur in her newborn checks? Would we have taken her home only to have been blue lighted to Bristol when something seemed terribly wrong? We’ll never know 🤷‍♀️

I felt so grateful in pregnancy that they found out about her heart defects early and we could put a plan in place. I remember seeing those parents in PICU who were rushed in in an ambulance with no clue how sick their cardiac baby was. (Only 50% of congenital heart defects are picked up antenatally). They weren’t only devastated for their sick child, they were also in clear shock that the thing we are most terrified about as parents had happened. I felt so lucky that we knew and I felt so lucky about how well we were treated by all the amazing NHS staff. I thought a diagnosis would give her the best chance of survival. But she still died.

I now keep asking myself again and again if we didn’t find out before she was born- would she have lived? Maybe… but asking questions won’t bring her back.